34. Moods and outlook

Moods and Outlook

A. Context

Dystonia affects daily life profoundly and patients report that it often affects their mood. Many find the emotional journey a second level of challenge, knowing it is also to date incurable. Its very visible or audible nature to strangers and public misunderstanding of it can add to the frustration..

Many patients in earlier times were treated as mentally ill, faking the condition or dealing poorly with life. However the medical profession has now found genetic links to some forms of the condition, MRI evidence and in many cases shifts in neurotransmtter and blood flow levels that confirm it is a real condition, though still not curable.

A look at the moods of patients was considered useful. Those who have had the condition for years, and have experimented with many treatments and ways to cope, often have much to teach about handling dystonia. A survey of moods was also considered useful as a way for patients to study their own journey, particularly to help them understand logical reasons for their moods.

B. History

1853 – Romberg reports of a pianist with problems with using the thumb only

            when playing piano .Romberg noticed dystonia in some musicians who did             repetitive movements with their hand.. Some observers looked at these conditions             and claimed they were occupational neuroses.

1860s- Ludwig Traube (1818-1876) notices a form of dystonia affecting

            the vocal cords that he names ‘nervous hoarseness”.

1900- French neurologist Henry Meige studies a condition in ten patients with jaw       oddities and eyelid closure. Later this is named the Meige syndrome though it gets             differentiated into the two separate dystonias. Meige at first believed patients             lacked ‘psychical equilibrium’,  and suffered from melancholic temperament and             emotional stress but in 1910 found evidence that there was  an actual change  in          the activity of the midbrain especially in the basal ganglia. 

1900- The areas of study of psychiatry and neurology are separated

            and movement disorders are no longer assumed to be just

            psychiatric

1900- Sigmund Freud postulates that many disorders trace to

            emotional conflicts from childhood.  Theories develop that dystonia

            is twisting away from stress or that forced eye closure is desire to

            close one’s eyes to the world.

1902 –Some people thought that it was just an invented disorder             related to hysteria and             call these ‘hysterical spasms’

1911 – Ziehen thinks that the convulsive actions that increase

            when a person tries to move voluntarily are not

            hysterical

1929- An international neurology association says that dystonia is not

            a disease of the nervous system however, making it seem

            again psychological

1950s a new drug for severe depression or psychosis is developed and others follow with      the same basic chemistry. These first generation antipsychotics are found             to have             significant risk of side effects such as tremor, anxiety and distress, weight gain,             high blood sugar, rigidity and muscle stiffness. Some patients develop             slower             movement and muscle weakness and some develop and restlessness and       inability to sit still. The drugs are recognized as often leading to dystonia and to a          later appearing tardive dystonia or tardive dyskinesia that are not immediately             recognized until the drug has been taken for a while. The problem partly becomes             that dystonia now can be frequently misdiagnosed as a significant mental health             problem.

1970- Dr. David Marsden in the UK  with electrophysiological studies

            finds evidence of dystonia having an organic cause.  He studies in particular jaw             dystonia andeye dystonia – blepharospasm and dubs it Brueghel’s syndrome after

            the 16 century painter’s works.

1970s- The crisis of negative side effects of some medication for depression

            and psychosis leading to dystonia is addressed and newer antipsychotics

            are over time developed. The second generation pills have fewer but not

            negligible risks of also leading to dystonia.

1975- First International Symposium on Dystonia- held in New York City. It identifies             dystonia as a broader category, including some disorders previously thought to be             neuroses

1991 – In North America over 98% of physicians have not heard

            of dystonia.

1997- Researchers find a protein they named torsinA, on the DYT1 gene

            that seems different for those with early onset generalized dystonia

            and that seems to have a role in how the body recovers

            from heat, traumatic injury or chemical poisoning. They also find

            a DYT1 mutation where three letters of the nucleotide

            genetic code are deleted in people with early onset generalized

            dystonia. This 3 part deletion is named the GAG deletion

            and it seems to result  in loss of glutamic acid that is            normally

            found in the torsinA protein. This seems to interrupt

            how the neurons can communicate with each other for movement

            and muscle control.

2019- Patients on social media still report their experience that many family doctors             have not heard of dystonia and that when X rays, MRIs, CAT scans and blood   tests show no abnormalities that they are still often treated as if they are imagining             the condition, and given medication for anxiety and depression. Some are still             referred to psychiatrists and many are treated in public as malingering, seeking             attention or just imagining the condition.

2020 –  Sept -Dr. Kristina Simonyan of Harvard Medical School and Dr. Davide             Valeriani  develop an MRI diagnostic tool that can detect dystonia. This is   the             first known technology of its kind to detect the condition on MRI. The AI             based             deep learning platform compared scans of 392 people with dystonia and             220             healthy individuals and diagnosed dystonia with 98.8% accuracy.              Researchers    have identified a new microstructural neural network biological             marker of             dystonia.

C. What seems useful to study further

1. The surveys give patients a chance to outline their lived experience in the hope that they will as a group be more often believed, with verifiable patterns of how the condition presents itself.

Ensuring that medical schools teach incoming doctors about the condition and remind current practising physicians of its existence is also useful. 

2. The relationship of stress to dystonia merits study.  It seems likely that stress does not cause dystonia but that dystonia can cause stress. Patients have spoken anecdotally of having to re interpret body clues of tension in ordinary stressful situations. When they tense up to find lost keys, their body may already be tense from dystonia  and some report that they have to more intentional in facing the new situation calmly.

3.The attitude people have to their own situation can be a key factor in their medical treatment, what medications they are prescribed and dose. what type of self medicating they try.   A 2021 study by Worthley and Simonyan found that suicide ideation and attempts among patients with isolated dystonia are higher than in the general population. These statistics highlight the importance of finding a cure. However along the way to cure, finding treatments that relieve symptoms and help the patient have a more normal life are important to give them hope

4. Asking people about moods poses its own challenges.

-all surveys were anonymous, and not traceable. People who feared this could be identified with them specifically or have any personal repercussions could be assured the surveys were anonymous

-those who felt hat a question was embarrassing did not have to answer. All questions on any survey were skippable, optional.

-the way to frame a question was carefully studied to not suggest that any attitude or mood was to be criticized or a ‘wrong’ answer

-the questions attempted to not have a bias about any treatment.. Some surveys in the past ask for example about ‘acceptance’ of treatment, ‘tolerance’ of pills taking, as if the ideal answer is was to cooperate and take the treatment. This survey series tries to avoid such wording so that those who did not want or like a certain treatment were allowed to say it and ‘acceptance’ was not the goal aimed at. The goal aimed at honesty about feelings.

5. The drugs for mental health treatment are sometimes themselves problematic. A pill that works for one person may not work the same way for another and side effects of some of the medications can be problems themselves. The surveys on effects and side effects of treatment may give useful information in that regard.

Some drugs for mental health have been found to cause dystonia or to make it worse. This is an irony that is very troubling for patients. Studies to determine which  patients should not be given certain pills, and the factors that  make that pill dangerous for this patient are important avenues to study.

The drugs that are given to reduce mental health symptoms do not cure dystonia. There is a frustration reported by some patients that they feel medicated to not worry but that the real issue is still not resolved. 

The drugs that are given to reduce mental health symptoms are often addictive, and this creates another dilemma. A patient who is given them starts to need them physically and it becomes dangerous to just stop them. The dangers of too quick a drug withdrawal are not often pointed out to patients whose experience with other medications over the years for headache or stomach upset always let them stop when they wanted. This new idea of danger stopping is not always made clear.

6. Patients with dystonia often are very embarrassed at their condition. Finding others who understand them, having family members and friends who understand them and help them seems to be not just useful but critical to their ability to cope and their will to go on. Some patients report greater connection with their spiritual nature and some say that the dystonia has helped them become better listeners and kinder. Some say that the dystonia has reminded them to look outwards and try to find a purpose that makes them feel useful and engaged, despite dystonia. These survivor type attitudes are useful to study for what they can teach about resilience.

7. Researchers have commented on the cleverness of some people with dystonia, that generalized dystonia often seems to occur in very smart people. Some observe that a person practically  has to be smart to figure out ways to cope with the condition . One study that stood out as amazing as a clinical study, read more like a short story, of a man on a beach admiring a mysterious woman, who was alluring and very smart, who had a dromedary gait. The leap of that one clinical study to attain near literature status showed an admiration for the person beneath the disorder and it was her mind that was so compelling. Postings on social media often reveal an amazing snarky, defiant, and startling sense of humor about a person’s own condition or how the world treats it or how to talk back to the world.  The website attempted to cheer people up about the condition by giving examples of such coping and has received some positive feedback for that.  Patients have expressed anger if they are laughed at but often within their own community sometimes can find humor in what they endure.

It is evident, seeing how intensely some patients have devised exercise programs to help with their musicians’ dystonia for instance, that we are dealing here with some very smart creative people.   It is not likely that dystonia makes a person smarter. However it may be interesting to see if people with dystonia, unable to do quite all they used to do physically, have more time to focus on other avenues of thought, and may even have useful insights about the world.  Stephen Hawking, renowned physicist, was probably brilliant anyway, but as he got more and more restricted in movement with his motor neuron disease, never stopped making brilliant studies of physics and impacting the world with what he had found. It might be useful, when people with dystonia are not distracted by pain or medication side effects, to see if they often find that they follow arguments clearly, and cut to the chase more easily on issues.  The nature of the brain to compensate might be interesting to study.

D. Comments from clinical studies and researchers

– The occurrence of non-motor features has not been as well established or studied in dystonia

– Numerous movement disorders have been too often inappropriately labelled psychogenic. Such a diagnosis not only causes unnecessary suffering but precludes appropriate treatment.

Dystonia does not affect intelligence and it is not a psychiatric (mental) disorder

Dystonia is a very noticeable medical disorder

There are many scales for mental health, many studies about anxiety, depression, clinical studies about medications and their effects. Some of these insights may be useful for those with dystonia.

E  Comments from patient experience

embarrassed, shy

I did not want to be having spasms in public

I don’t tell people that I have dystonia

I feel like others are staring at me

I felt like people were watching me and noticing my tremors

I found it hard to eat in public because people were staring at me

I used to keep my condition a secret from friends

It upset me that people would edge their kids away from me

It was hard to fake that I was well or to pull off a game face that convinced anyone

It is hard to look in the mirror at my bendy straw neck

Suicidal thoughts stayed with me

It was an intuitive reaction on my part to hide my dystonia from people

blamed, stigmatized

A doctor said my dystonia was because I don’t speak about my feelings enough

Maybe because I have a physical disability, people talked in louder voices to me

One doctor thought I was just seeking attention

People at school bullied me and my teacher scolded me for how I talked

People at work made fun of my shakes

People thought I was making up the word dystonia

People think my spasms mean I’m on drugs

The ER doctor thought I was faking

That guy has no idea how I am feeling so he should just shut up

I sometimes have people staring at me thinking I am mentally retarded

sad

I hide a lot of tears
It was frustrating to have friends say that it could be worse

It felt like I was mourning someone who had not died

It was hard partly because nobody had heard of it so it was hard to explain to friends

It’s lonely because I don’t know anyone else who has this

Knowing this is incurable is hard to cope with

Nobody I spoke to had ever heard of dystonia

People tell me just to relax

I think it’s OK to sometimes feel sad about all this

It is hard to accept dystonia because I remember how effortless motion used to be

A day of self pity is OK now and then.

Just because I carry dystonia well does not mean it’s easy

effect of emotion on dystonia

When I am self conscious in a crowd the neck pull is worse

When I’m angry or stressed, the shakes and pain are bad

accepting, resilient

I call my experience with dystonia a journey, not a fight.

I realized I must just accept dystonia because hating it feeds it
I stopped feeling ashamed or blaming myself for my condition

I am a better person now because I notice now when others are hurting and I care

I can still follow my passion and go for outdoor hikes

I have learned not to hide dystonia like it was a dirty secret. I accept it

I care less now what other people think and just let the dystonia happen

I decided I’d research and take responsibility. I’d advocate for my own condition

When people think I have laryngitis, sometimes I just say yes

I think happiness is a choice

My creative spirit is calling me saying “There is still more beauty that needs to be put into the world”.

We patients can get better or we can get bitter

grateful

I know it has not been easy for someone to live with me

I was grateful for my father who told me whatever happens we’re in it together

My family are my biggest cheerleaders

My husband helps me forget my illness

My kids love me around the world and back so that helps

The best friends are ones who listen and just support, not try to offer a cure

Without my family’s help I would be lost

I love how little kids are refreshingly curious about my condition not rejecting me

Family members try to protect the one who has dystonia

forgiving

I am still working on forgiveness of those who treated me badly

It’s not fair for me to get upset with those who don’t understand it  if I never explained it

I insist on not being pitied.

finding humor

I just tell people I lean right politically and physically

Now we can just joke about my dodgy head

A big F You to dystonia
If others don’t respect me there comes a point where I just say ‘Screw you’ and move on

Dystonia has made me less afraid of being attacked by bears

I am only swearing because I heard a person can endure pain longer if they swear

I feel like a wet towel, wrung out in both direction

My body anticipated the pandemic. It was already in lockdown

I wasn’t looking for something to ruin my life but it seems to have round me

F. Website and survey comments about having been asked questions

desire for the surveys to be useful in research

 I know it will be of help to many who deal with dystonia.

I’m hoping findings from all of these studies will lead to breakthroughs in finding the cause and treatment of dystonia.

I think research by the victims of dystonia themselves would be very useful

i am going to send out your website to all of our members. I want to highly recommend to the group that they will learn much from your research website and also that their participation in the survey may assist professionals in our future treatment and care.

I think it will be a great resource for researchers.

I hope more awareness and advocacy will come about for people suffering from movement disorders soon. I’m betting on a revolution in medicine too especially with all the medical research bustling because of the pandemic and need for better treatments for all disease

gratitude to be heard

I think people would be very interested in participating in this survey.  We often feel that we are not heard, especially with a rare, weird, somewhat bizarre disorder like dystonia.

Thank you for the confirmation in my feelings. Your positivity is just what I needed

Fabulous to know that so much research is being conducted these days. I prayed for this the past forty years!! YAY!!

 What a fantastic resource. I’m in tears reading some of this. Such a cruel disease. Newly diagnosed, I have not accepted this yet although I know it’s not going away

The response you have already received indicates the interest people  have in expressing their thoughts and learning from the cumulative responses of others.

 I’ll check that out. My older brother who was diagnosed years before me has always been one to find humor in everything. I’ll have to show it to him as well.

I like surveys Thank you so much for this information

.This website is. V e r y.  Impressive!!  Keep going . U r doing something phenomenal and helpful for the Dystonia world

I’m very active for dystonia people in France. I listen, help, and réconfort every people who phone or write me. Many people are alone and don’t understand about illness.

 It makes me happy that I feel someone is trying to figure this bizarre condition  out. Thank you for trying to help those suffering every day with this condition

Without champions like yourself who take the initiative to get people involved in learning more about this rare movement disorder, we would remain on the sidelines in terms of research and treatments.

learned new ideas just from website or the questions asked, sharing what is known

 I have found the questions on the dystonia survey really interesting and thought provoking.

I am very intrigued to see the results of the surveys as I learned a lot from just taking the survey myself.

I just did the vocal one. My voice tends to sound like I have laryngitis if I talk too much or am in an active episode. However, I was surprised that when I repeat the word eighty as the quiz asked, I would start losing my voice. Weird stuff!

Interesting. I never knew it could hit other parts of the body.

Many thanks and what a wonderful resource to you have created. We work on ourselves so we can help others, but we also help others so we can work on ourselves.

Thank you again for pursuing any and every avenue for history & relief.  Love all the helpful comments from patients and your surveys.

Good luck with research I’ve had dystonia for 44 years and have filled in many of your questionnaires

You have some absolutely phenomenal data and research there. 

G  How to ask

Source of question ideas:

patient reports,  clinical studies

H. Question categories

cognitive, think, follow arguments, memory

fear, worry

frustration, anger

gratitude – consolation, helps, resources

humor – see describing

mocked, not believed, ignored excluded, treated as low IQ

sadness

self-esteem, appearance

social

stress – financial, career – see also coping

stressors outside dystonia

thoughtful, defiant, optimist, mission , dreams- see also outlook

time perception, concentration, distraction

I. Results

moods

17A     28            moods              26            73                    x                                  long

17B      23            moods              20            74                    89                                6

39        6            moods              9            11                    80                                2

max no. respondents                             28

total questions                                     158

likely type of dystonia                                   all

percent of all respondents doing survey                            28 or 508 or 5.5%

J. Results

(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one, question 3)

1. first reaction

-Was being diagnosed with dystonia the first time you had ever heard of dystonia?

            78.57% Yes

            21.43% No (17A-21)

-Did you go through a time of asking “Why me?” about getting this disease?

            85.71% Yes

            14.29% No (17A-22)

-After diagnosis was it at first scary to be alone?

            29.63% Yes

            70.37% No (17A-28)

-Were you so upset that you had trouble making decisions like crossing a street?

            14.81% Yes for a while

            85.19% No, It never got that bad (17A-29)

-Did it feel like your only escape from worry was sleep?

            25.00% Yes for a while but not now

            42.86% Yes and I still sometimes feel that way

            32.14% No (17A-31)

2, later reaction

-With dystonia have you changed?

            8.33%  I have  become sadder than I’d like

            29.17% I have decided to still be the same old me

            33.33% I have discovered a good part of my personality because

                        of the dystonia

            29.17% It has taken away a lot of what I was (21-32)

-Have you had dystonia long enough that it is familiar now and less scary?

            87.50% Yes

            12.50% Not really (21-7)

3. general

-How do you deal with a new stressful situation, like a thunderstorm or burnt dinner
            30.43% I find I am very emotional

            69.57% I take a deep breath and on purpose try to not add stress to the dystonia

            (21-24)

-Are you getting to feel more comfortable when alone?

            90.48% Yes

            9.52% o (17B-4)

-How concerned are you now about how others think of you?

            62.50%  I still worry about what they think

            45.83% I accept who I am and don’t worry about what others think

            20.83% I try to turn it around and show interest in them (21-8)

-Are you willing to have your picture taken?

            65.22% Yes, even if the dystonia shows

            34.78% Yes but I try to be in the background or somehow hide the dystonia

            0% No (21-10)

4.  fear, worry, upset, nervous, scared, unpredictable, genetics, at doctor’s

-Have you ever felt so nervous at the doctor’s that the walls seemed to close in?

            14.29% Once in a while

            3.57% Yes, often
            82.14% No, never (17A-30)

-Do you worry that your dystonia may get worse?

            55.56% Yes, often

            18.52% Yes, once in a while

            11.11% I used to but not as I got used to it

            14.81% No. I don’t worry about what’s next (17A-24)

-How would you describe your experience with dystonia and anxiety?

            87.50% Dystonia has caused me some anxiety

            50.00% Treatment for anxiety helps with anxiety but the dystonia remains

            12.50% Treatment for anxiety also removes the dystonia

            6.25% I think anxiety caused my dystonia (20A-42)

-Is the medication affecting your anxiety?

            22.22% Yes, medicine seems to reduce my anxiety.

            29.63% No, medicine has no effect on my anxiety

            3.70% Yes, the medicine seems to add to my anxiety

            44.44% not applicable (17A-26)

-fears and concerns

            33.33% I am sometimes afraid to be alone because of dystonia

            100.00% I am sometimes relieved to be alone

            66.67% I have private fears about being seen on camera or speaking

                        in public, because of dystonia

            50.00% I have private fears about falling or bumping into things because

                        of dystonia

            33.33% I have private fears about eating problems or swallowing problems

            33.33% I have courage to get through the day because I have other things

                        I need to do

            50.00%  I have courage to get through the day because a person or pet needs me

                        (39-8)

-Do you worry what will happen to your family if your dystonia gets bad?

            51.85% Yes

            48.15% No (17A-25)

-Are you anxious to find out if dystonia is sometimes passed on genetically to your children?

            64.29% Yes

            35.71% No (17A-34)

-In remission did you worry the dystonia would return?

            17.86% Yes

            3.57% No

            78.57% not applicable (17A-51)

5. frustration, anger, at self or doctors

-Were you misdiagnosed for a time before dystonia was diagnosed and if so,

how do you feel  about that delay?

            33.33% There was little delay. I was diagnosed quite quickly

            7.41% I was confused and frustrated about other diagnoses that

                        later provided inaccurate

            33.33% I am angry at other diagnoses that later proved inaccurate

            25.93% I have accepted that it is what it is and at least I know now what

                        I have (17A-46)

-Do you sometimes feel irritated that science has not cured this yet?

            75.00% Yes

            25.00% No. I accept this is where we are right now (21-20)

-Did you for a time have a cynical attitude to doctors or medicine?

            71.43% Yes

            28.57% No (17A-63)

-Has it been a struggle to not be angry at your body?

            3.70% Yes, especially at first

            40.74% Yes and I am still angry sometimes

            55.56% No. I have decided my body is my ally and we’re working

                        on this together (17A-36)

6. mocked, not believed, misunderstood, ignored, excluded, , thought low IQ

-Did anyone ever treat you like they thought you were faking the dystonia?

            43.24% Yes

            56.76% No (19-82)

-These questions ask about how others treat you negatively.

            16.67% Some people seem embarrassed to be seen with me

            33.33% People have mocked me behind my back

            33.33% People have called me crazy or insulted me to my face

            16.67% People have been irritated if I am slow and awkward

            33.33% not applicable (39-3)

-These questions ask about dystonia symptoms and how others  might see them or how you might at first think of them.

            23.53% My tremor may look like I am cold

            17.65% My tremor may look like I’m scared

            0% My tremor may make me wonder if I am scared

            29.41% My jerky movements may look like I am upset
            47.06% My stiff body position may look like I am upset

            29.41% My stiff body position may make me feel upset

            17.65%  People hesitate to tell me sad news as if they are not sure I can handle it

            11.76% I am learning not to misjudge my tremors or tightness as emotional         

                        but it took time to do that

            47.06% Others around me are learning that my emotions are normal despite

                        the dystonia

            0% unsure

            23.53% not applicable (20A-37)

-Has a stranger ever treated you like you were mentally handicapped?

            38.16% Yes

            61.84% No (1-23)

-Have people looked surprised that you just said something smart?

            38.89% Yes

            61.11% No ( 20B-5)

-Did anyone treat you because of your symptoms as if  you were just awkward, clumsy or lazy?

            44.44% Yes

            55.56% No (17A-41)

-Have you worried that anyone might be scared of you?

            9.52% Yes someone even told me kids would be scared of me

            14.29% Yes sometimes people did look scared of me

            76.19% No. I realized kids were not scared, just curious (17A-54)

-Have you had to endure cruel looks from strangers?

            7.69% Yes, a lot

            65.38% Maybe but not many

            26.92% Never (17A-48)

-Have you had to endure hurtful remarks from strangers?

            19.23% Yes often

            42.31% No not many

            38.46% Never (17A-49)

7. sad, losses of daily function, sad for family

-Has it sometimes been hard to wake up and face the day?

            14.29% Yes it is usually hard

            60.71% It is sometimes hard

            25.00% No. I am able to look forward to the day most of the time (17A-42)

-Do you sometimes just want a good cry?

            74.07% Yes

            25.93% No (17A-43)

-At first did it seem to make your family sad to see your dystonia?

            60.87% Yes for sure they were sad

            21.74% No they did not seem sad at all

            34.78% They seem happier if I am coping well

            56.52% I realize they have been on a big adjustment journey too

            13.04% I think some were afraid they might get dystonia one day too

            60.87% We are all coping better now we understand it better (17A-55)

-How have your family members handled your dystonia?

            66.67%  They have been supportive and kind

            0% They have been distant and withdrawn

            33.33% I have not felt much support (17B-67)

-Do you have moments where you need a good cry or sad time?

            62.50% Yes. I permit myself a pity party occasionally

            25.00% I resist crying and try to just soldier on

            12.50% I don’t feel a need to cry (21-4)

-sadness

            16.67% Since diagnosis, I am sadder and cry more often

            16.67% I wish I could cry . I feel a burden of sadness in me

            16.67% I am actually not sadder than before diagnosis

            50.00% It seems like dystonia throws me a lot of curve balls

            66.67% I am sad mostly for what I can do less now for hobbies and activities

            33.33% I am sadder in bad weather as if my problems have doubled

            16.67% Other problems like broken appliances upset me more than they used to

            33.33% Other problems like broken appliances upset me less than they used to

            16.67% not applicable (39-1)

-Have you been worried that family was embarrassed about you?

            12.50% I was worried but it turns out they are not

            16.67% I was worried but it turns out they are protective

            33.33% I was worried but it turns out they just accept me

            37.50% I was not worried about any potential embarrassment (17A-53)

-Is the dystonia moved to a new part of your body, did you experience sadness all over again?

            47.06% Yes but it did not last as long

            41.18% Yes and it lasted longer

            11.76% No. I accepted the change easily (17A-52)

-Are you more hesitant now about any change in routines?

            64.29% Yes

            35.71% No (17A-27)

8. self -esteem shame, guilt, embarrassment, self confidence in skills, appearance

-Have you felt unattractive because of dystonia?

            37.04% Nearly always

            40.74% Sometimes

            22.22% No. I have decided my inner beauty always shines through (17A-50)

-Have you felt sad looking in the mirror because of dystonia?
            34.62% Over 90% of the time

            15.38% About half the time

            50.00% No. I try to smile at my reflection and feel OK about my appearance

                        (17A-35)

-Have you avoided having your picture taken because of the dystonia?

            42.31% Yes

            57.69% No (17A-37)

-For a time after diagnosis did you stop caring about your hair or appearance?

            32.14% Yes

            67.86% No (17A-32)

-How much do you try to not look like you are in pain?

            50.00% I try to hide my pain

            50.00% I don’t care what people think. I handle my pain as it comes (21-6)

-Have you felt guilty or ashamed somehow because you have dystonia?

            66.67% I was embarrassed at first

            22.22% I felt guilty about who I am, at first

            48.15% I am less embarrassed now

            18.52% I never did feel embarrassed about it

            40.74% I never did blame myself for it

            48.15% I still feel a bit embarrassed

            37.04% I still struggle to like myself (17A-39)

-Did you start to believe it, if a medical professional told you your condition was due to stress?

            20.00% Yes for a time I believed it was all just stress

            44.00% No. I never believed it was all just stress

            4.00% I was very confused because I respect them but I was far from sure

                        they were right

            32.00% I am actually angry still at those who treated me that way

            0% They were wrong but I have forgiven them (17A-40)

-Did you lose interest or confidence in some of your old skills?

            15.38% I lost interest and saw no point in them

            53.85% I lost confidence and felt less competent at them

            26.92% I never lost any interest in things I love

            15.38% I never felt less competent at things I lve

            15.38% I did lose interest but I got it back

            15.38% I did have a dip in competence but got it back (17A-38)

-Do you worry that people will first think of your disability when they see you?

            12.00% Yes at first but not now

            40.00% Yes and I still do

            48.00% No (17A-59)

-Did you feel at first that people avoided looking directly at you?

            19.23% Yes but not lately

            26.92% Yes and they still do

            53.85% No (17A-58)

-Do you feel like you have to explain to others how you look?

            24.00% Yes

            44.00% No

            32.00% I used to but now don’t bring it up automatically (17A-57)

-When you use a sensory trick or geste antagoniste, do you worry what you look like doing it?

            36.00% Yes

            64.00% No (17A-60)

-Did you worry that no one would want to associate with you because of dystonia?

            16.67% I was scared no one would want to date or marry me

            8.33% I was scared no one would want to be my friend

            8.33% I was scared current close family would drift away from me

            66.67% I never did fear loss of support because great people stood by me                                       (17A-47)

9. cold – absence of reaction

-For a time were you unable to cry or laugh?

            0% Yes. I felt too scared to engage in such things

            29.63% Yes. I felt too sad to engage in such things

            70.37% No. I was always able to still have normal emotions (17A-33)

10. thinking- concentration, memory, time perception, distractability

-Is the pain of dystonia so bad that it is sometimes hard to care about other things?

            42.31% Yes, it is often a struggle

            38.46% Yes but only occasionally

            19.23%  No. The pain does not keep me from interest in other things (17A-23)

-These questions ask about ability to focus on tasks at hand or complex ideas,.

            37.50% When I am in pain, time goes slowly

            12.50% When I am busy adjusting to pain positions and exercising,                               

                        time goes quickly

            12.50% It seems like I am always waiting for a doctor’s appointment

                        or a prescription

            37.50% I write down errand lists because my dystonia sometimes preoccupies

                        me otherwise

            25.00% With medication I am on, I have more trouble remembering some things

            12.50%  When I am on only appropriate treatment, I can follow people’s

                        arguments quite well

            12.50% When I have an idea, I can sometimes think  of examples quite clearly,

                        as if the dystonia helps me ignore some distractions

            37.50% not applicable (25-22)

11. stressors – financial, daily

-Are you having problems with a co-worker or boss?

            5.26% Yes

            94.74% No (17B-49)

-Have your paid employment situation changed recently?

            38.89% Yes

            61.11% No (17B-32)

-Are you having problems with a neighbor?

            4.76% Yes

            95.24% No (17B-48)

-Have you recently moved to a different residence?

            33.33% Yes

            66.67% No (17B- 34)

-Have  you recently had a housing emergency like a flood or rodent infestation?

            9.52% Yes

            90.48% No (17B – 37)

12. stressors – other life events, illness

-Are you having trouble with the in-laws?

            0% Yes

            50.00% No

            50.00% not applicable (17B-50)

-Is someone near you in financial or legal trouble?

            19.05% Yes

            80.95% No (17B- 42)

-Is someone near you having employment problems?

            23.81% Yes

            76.19% No (17B-41)

-Is someone near you going through separation, divorce or other relationship upheaval?

            14.29% Yes

            85.71% No (17B-40)

-Have you another chronic medical condition like asthma, diabetes?

            57.14% Yes

            42.86% No (17B – 27)

-Do you have significant food or other allergies or sensitivities?

            42.86% Yes

            57.14% No (17B- 28)

-Has weight become a concern for you?

            47.37% Yes

            52.63% No (17B – 26)

-Have you recently gone through marriage or relationship upheaval?

            23.81% Yes

            76.19% No (17B – 33)

-Have you recently been in an accident?

            0% Yes

            100.00% No (17B-31)

-Have you recently witnessed a serious accident?

            0% Yes

            100.00% No (17B-30)

-Is someone near you dealing with a major medical problem>

            42.86% Yes

            57.14% No (17B- 38)

-Is some of your sadness also because someone close to you died?
            45.00% Yes

            55.00% No (17B-29)

-Is someone near you dealing with addiction?

            14.29% Yes

            85.71% No (17B- 39)

-Are your adult children struggling with parenting?

            10.00% Yes

            50.00% No

            40.00% not applicable (17B-43)

-Do your grandchildren have serious problems you are concerned about?

            20.00% Yes

            25.00% No

            55.00% not applicable (17B-44)

-How do you feel examining challenges you face on top of dystonia?

            47.37% I am relieved. They are logical concerns to have and I am mentally           

                        still well

            42.11% I am sad to think of them but feel good understanding them

            15.79% I prefer not to think of them (17B-52)

-Are you pretty sure you can work out ways to address these other problems?

            88.89% Yes

            11.11% No (17B-53)

13. defiance, determination, find answer, still participate, goal, dream

-dreams and goals

            33.33% At night in my dreams I have dystonia

            33.33% At night in my dreams I do not have dystonia

            50.00% I still set a goal and do it, like weeding the garden, though

                        it may take me a while

            83.33% I have had to cancel some plans because of dystonia and this

                        makes me sad

            33.33% I am relieved that dystonia gives me an excuse to not have

                        to do some things (39-7)

-If you have a strong opinion on a topic do you still say it?

            66.67% I still speak up when it matters

            25.00% There are many things I don’t say now because it’s hard to talk

            8.33% I suppress my thoughts more often now (21-22)

-Are there people who need you and to whom you can still be helpful?
            90.48% Yes

            9.52% No (17B-56)

-Have you decided to show the real you even if you have a crooked shell?
            84.21% Yes

            15.79% No (17B – 25)

-These questions ask about defiance and hanging in there

            33.33% Facing dystonia takes courage and luckily I am a fighter

            16.67% When I get out of bed each day. I think “Take that, dystonia!”

            83.33% I give myself permission to not be a hero some days

            66.67% When a new problem happens I find I have developed  some

                        coping strategies because of dystonia

            50.00% I am a friend of mine (39-11)

-Are you trying to be very good at some  other task outside of focus on dystonia?

            20.83%  Yes, it helps me to strive for perfection

            58.33% Yes but I am accepting I don’t have to be perfect at anything

            20.83% No I have no big projects right now (21-5)

-Do you have a goal that is so important to you it puts the dystonia second?

            48.50% Yes

            51.50% No (1-24)

14. support network  –  people, help available

-Are you by nature independent and prefer not to ask for help?

            88.89% Yes

            11.11% No (17A-65)

-Are you able to get the help you need?

            70.37% Yes

            29.63% No (17A-66)

-Is there someone whose love for you through it all, touches you profoundly?

            76.27% Yes

            23.73% No (1- 25)

-how people have treated you positively

            16.67% I feel that I am trying to act like I am OK and others

                        should not interrupt the performance

            50.00% People have been kind to me, opening doors and helped me get

                        seated

            66.67% People have been kind to me waiting patiently for me to talk

                        and telling me there is no rush

            66.67% I want others close to me to care how I feel but I don’t always 

                        want to talk about my condition

            50.00% People have included me in chats and news and jokes

                        and looked past my dystonia

            100.00% I have a few people in my life who have been wonderful

                        through all this (39-4)

-Do some members of your immediate family live far away?

            66.67% Yes

            33.33% No (17B- 36)

-Have you lost touch with a close friend?

            42.86% Yes

            57.14% No (17B – 45)

-Has a family member recently moved out?

            14.29% Yes

            85.71% No (17B – 35)

-Do you have ongoing problems with a sibling, child or grandchild?

            15.00% Yes

            85.00% No (17B-47)

-Do you have ongoing problems with a partner or spouse?

            19.05% Yes

            80.95% No (17B-46)

-Has anyone amazed you by how much they help you still enjoy normal things?

            65.00% Yes

            35.00% No (17B-68)

-Are there people who love you who would help you in crisis?

            100.00% Yes

            0% No (17B- 55)

-Is there someone in your life who seems to understand how you feel?

            71.43% Yes and what a gift they are in my life

            28.57% No. Nobody seems to understand me exactly (17B-66)

-Have you found that store clerks and strangers are often very kind?

            75.00% Yes

            25.00% No (17B-17)

-Have some of your care team gone out of their way to learn more about dystonia?

            60.00% Yes

            40.00% No (17B-16)

-Is there someone who advocates for you with doctors?

            23.81% Yes

            76.19% No (17B-15)

-These questions ask about those you love and how much you confide in them.

            66.67% I am confident in their love and don’t want to worry them

            33.33% They are sad to see me in pain so I try to not look like I am in pain

            50.00% My dystonia bothers me less if I am with people I love

            16.67% It is frustrating to get a card that says “Get well soon”

            100.00% I need someone to confide in when I’m having a rough day and

                        I do pick a family member or friend

            33.33% I need someone to confide in when I am having a rough day and I

                        sometimes reach out to someone else with dystonia

                        eg. on social media or in a support group

            0% I need someone to confide in and sometimes reach out to a person a bit

                        more distant than family, who knows me well- eg. old friend

                        distant relative, church minister

            0% not applicable (39-9)

15. consolations – other people with dystonia, not fatal

-Have you felt humbled seeing someone whose dystonia was worse?
            78.95% Yes 

            21.05% No (17B-19)

-Have you felt humbled to see others with terminal illness when yours is not?

            89.47% Yes

            10.53% No (17B-20)

-How do you feel on learning that some very famous golfers, pitchers, pianists

have also had dystonia?

            45.83% I feel sad for them but relieved I’m in good company

            25.00% I feel less stigma about it

            29.17% Knowing that does not really help me (21-28)

– re: research finding that many patients say their dystonia stabilizes after a few years

            57.14% I am relieved to hear that

            17.86% I did not know that

            25.00% This news does not make much difference to me (17A-19)

-re research finding that headache medications do not seem linked to dystonia

            53.57% I am relieved to hear that

            17.86% I did not know that

            28.57% This news does not make much difference to me (17A-18)

-re: research finding that radio therapy treatment does not seem to generate dystonia

            21.43% I am relieved to hear that

            28.57% I did not know that

            50.00% This news does not make much difference to me (17A-17)

-re research finding that general anesthetics do not seem linked to dystonia

            42.86% I am relieved to hear that

            35.71% I did not know that

            21.43% This news does not make much difference to me (17A-16)

-re research finding that dystonia does not seem caused by emotional imbalance

            57.14%  I am relieved to hear that

            17.86% I did not know that

            25.00% This news does not make much difference to me (17A-14)

– re research finding that anxiety does not seem to alter the underlying dystonia process

            57.14% I am relieved to hear that

            32.14% I did not know that

            10.71% This news does not make much difference to me (17A-15)

-research finding that dystonia does not have a  primary effect on bones

            71.43% I am relieved to hear that

            14.29% I did not know that

            14.29% This news does not make much difference to me (17A-13)

-re research finding that most people with idiopathic dystonia are in excellent medical health except for dystonia

            42.86% I am relieved to hear that

            32.14% I did not know that

            25.00% This news does not make much difference to me (17A-12)

-re research finding that with dystonia tremors there is usually no alternation of consciousness

            50.00% I am relieved to hear that

            17.86% I did not know that
            32.14% This news does not make much difference to me (17A-11)

-re research finding that some patients experience partial remission or full remission from dystonia

            57.14% I am relieved to hear that

            28.57% I did not know that

            14.29% This news does not make much difference to me (17A-20)

-re research finding that dystonia does not seem to affect blood circulation

            64.29%  I am relieved to hear that

            17.86% I did not know that

            17.86% This news does not make much difference to me (17A-8)

-re research finding that dystonia rarely affects breathing

            60.71% I am relieved to hear that

            25.00% I did not know that

            14.29% This news does not make much difference to me (17A-7)

-re research finding that dystonia does not tend to affect smooth muscles like the heart

            75.00%  I am relieved to hear that

            10.71% I did not know that

            14.29% This news does not make much difference to me (17A-6)

-re research finding that dystonics are often very smart

            42.86% I am relieved to hear that

            42.86% I did not know that

            14.29% This news does not make much difference to me (17A-5)

-re research that finds dystonia is not linked to diminished intelligence

            57.14% I am relieved to hear that

            7.14% I did not know that

            35.71% This news does not make much difference to me (17A-2)

-What is your reaction to research that shows dystonia rarely changes life expectancy?

            50.00% I am relieved to hear that

            7.14% I did not know that

            42.86% This news does not make much difference to me (17A-1)

-re research that finds dystonia is not linked to deficits of cognition, executive function or working memory

            60.71%  I am relieved to hear that

            10.71% I did not know that

            28.57% This news does not make much difference to me (17A-4)

-re research that finds that dystonia is not linked to dementia

            71.43% I am relieved to hear that

            14.29% I did not know that

            14.29% This news does not make much difference to me (17A-3)

-re research finding that there is generally normal metabolism for patients with dystonia

            60.71% I am relieved to hear that

            17.86% I did not know that

            21.43% This news does not make much difference to me (17A-9)

-research finding that bladder muscles are rarely affected by dystonia

            60.71% I am relieved to hear that

            21.43% I did not know that

            17.86% This news does not make much difference to me (17A-10)

16. optimism, hope

-Are you optimistic that somehow you can get by financially?

            95.24% Yes

            4.76%  No (17B-51)

-Are you confident there are services that can help you if you need help?

            75.00% Yes

            25.00% No (17B-54)

-Do you plan your days so you can look forward to getting up?

            42.11% Yes

            57.89% Not usually (17B-14)

-Do you feel you can handle most things OK?

            65.22% Yes, usually

            34.78% Sometimes I struggle (17B-  5)

-How do you feel about the state of medical knowledge and research about dystonia?

            16.67% I wish more research would be done

            54.17% I am dismayed at how little is known

            29.17% I am reassured good people are working every day to find a cure (21-30)

-When you look ahead do you have some optimism?

            4.17% I am optimistic my exercise are going to help me

            4.17% I am optimistic my diet and daily adjustments are going to help me

            12.50% I am optimistic that my medical treatment is going to help me

            16.67% I am optimistic that a cure will be found for dystonia

            62.50% I just face one day at a time and try not to look too far ahead (21-31)

-long term optimism about dystonia

            33.33% I used to think there would be a cure soon and now am less sure

            33.33%  I believe there will be a cure for dystonia

            33.33% I can be happy as I wait for a cure to be found

            16.67% I sometimes am amazed that others older than me are healthier

            83.33% I sometimes just let myself be sad and then get over it

            16.67% not applicable (39-10)

17. acceptance – pacing, self-care, good listening

-Would you say that you have accepted that you have dystonia?

            66.67% Yes. I am very used to the idea

            33.33% Not fully. It still shocks me and saddens me

            0% No I am very much fighting the idea (21-1)

-Does it seem like you have problems with muscle control yes, but not with emotional self- control?

            50.00% Yes

            50.00% No (17B-1)

-These questions ask about things you have chosen to do.

            50.00% I live each day as if I just got bad news and I took it

                        with radical acceptance

            50.00% My children, grandchildren and/or friends are my medicine

                        for dystonia

            33.33% Sex may be a bit uncomfortable but it is worth it

            66.67% I rest when I need to. I listen when my body whispers

                        before it starts to scream

            83.33% I have figured out I am a bit of a misfit but then, so is everyone

            33.33% Dystonia is not an enemy for me. It is just something I have

            50.00% I am proud of myself that I did these surveys. I deserve a

                        reward and I am going to give myself one. I am helping advance

                        medicine (42-2)

-Are there days when you don’t want to talk about dystonia?

            70.83% Yes. I like to move on

            29.17% No. It is always on my mind (21-19)

-Does watching a child or pet help you appreciate little joys?

            80.95% Yes

            0% No

            19.05% not applicable (17B-73)

-How have you dealt with moods over the course of a day?

            47.83% I accept that I’ll have sad times and better times

            13.04% I have big outbursts and then feel better

            39.13% I am figuring out ways to mostly be calm (21-18)

-How have you dealt with anger about the dystonia?

            62.50% I have decided not to blame doctors or myself and just accept

                        it is what it is

            37.50% I still struggle with occasional anger (21-17)

-Have you found ways to cope with the pain most of the time?
            40.00%  I have lots of strategies and always use them

            45.00% I cope well maybe half the time

            15.00% I am really struggling with this pain most of the time (17B-9)

-Do you dress and look as good as possible despite the dystonia?

            69.57% Yes, for others and for me

            30.43% No. I feel it’s sort of pointless (17B-10)

-Do you feel you deserve to eat meals you enjoy?

            100.00% Yes I do

            0% I struggle to feel I deserve things (21-12)

-When people greet you with “How are you?” how do you answer?

            100.00% I usually say I’m doing all right

            0% I usually tell them I’m not doing well (21-25)

-These questions ask about things you have chosen not to do.

            50.00% I let dystonia do its thing and have chosen to not let it upset me

            66.67% I do not let dystonia define me. I have other interests

            50.00% I avoid toxic people and ‘energy vampires’

            83.33%  I set boundaries so people who are hard to deal with do not upset me

            0% none of the above (42-1)

-Would you say that dystonia has made you a better listener?

            47.83% Yes

            52.17% Not really (21-26)

-Have you understood better now the heartbreak of others in their own situations?

            100.00% Yes

            0% No (17B-21)

18. spiritual , perspective

-Do you find things to be grateful for even when you are alone?

            36.36% I appreciate nature more now

            9.09% I appreciate music more now

            9.09% I appreciate books more now

            40.91% I appreciate sleep more now

            4.55% I find it hard to be grateful when I am in such discomfort (21-29)

-Have you found it helps to journal your feelings?

            27.27%Yes

            72.73% No (17B-8)

-Have you felt proud of your body for how it tries to manage?

            72.73% Yes. It is working hard

            27.27% No. I am angry at my body (17B-7)

-Are you getting more familiar with the ebb and flow of your condition and less upset at each change?

            65.22% Yes. I try to accept and ride it out

            34.78% Not yet. I still am struggling (17B-6)

-Would you say you are your own friend?

            75.00% Yes I try to be

            25.00% No. This is something I struggle with (21-13)

-Have you become more pensive, philosophical or spiritual because of the dystonia?

            65.00% Yes

            35.00% Not really (17B-74)

19. social – those with, those not with dystonia

-Have you avoided people because of the dystonia?

            74.07% Yes

            25.93% No (17A-61)

-Do you worry that you seem unfriendly?

            57.69% Yes

            42.31% No (17A-62)

-Facing dystonia, are you newly inspired by others who have struggled in life?

            36.36% I have new admiration for war survivors

            45.45% I have new admiration for seniors who went through the Depression

            72.73% I have new admiration for people who face cancer or MS or other

                        serious illness

            9.09% I have new admiration for politicians who have to face economic         

                        upheavals or health crises like the pandemic

            27.27% I never really gave it much thought (21-27)

-Over time have others cheered up around you and gotten used to you having dystonia?

            84.00% Yes

            16.00% Not yet (17A-56)

-Do you still go to family gatherings?

            91.67% Yes

            8.33% No (21-9)

-How would you describe your social life now?

            79.17% I spend less time at social events than I used to

            54.17% I don’t feel guilty for leaving events a bit early

            29.17% I am lonely and wish I had more social life (21-3)

-Do you appreciate when someone asks you how you are doing with the dystonia?

            90.00% Yes

            10.00% No (17B-23)

-Do you appreciate when someone asks you about what dystonia is?

            94.74% Yes

            5.26% No (17B-22)

-Do you know anyone else with dystonia?

            52.38% Yes

            47.62% No (17B- 69)

-Do you feel relief to communicate with another person who has dystonia?

            71.89% Yes I feel comfortable and accepted

            39.27% Yes I feel cheered up to face things together

            36.05% Yes because I find role models and inspiration

            53.22% Yes but I am sad to see their suffering

            12.02% No, because it scares me what may be ahead for me (1-19)

-These questions ask about how you navigate what others know about dystonia.

            60.00% I sometimes just let them think I am hoarse or have laryngitis today

            20.00% I sometimes tell them I have a cold

            60.00% I sometimes tell them I am just tired

            20.00% I usually make it a point to say I have dystonia so people can become

                        familiar with the term

            80.00% Sometimes I explain my situation and sometimes I don’t

            0% I tell people I have a type of Parkinson’s, even though I don’t,

                        but it is something they might understand

            0% none of the above (40-6)

            (low number of respondents to this question)

-Have you found that people usually are not thinking of you the negative way you assumed?

            81.82% Yes

            18.18% No (17B-2)

-Do you sometimes reason that you don’t mind your face because you are behind it and how others deal with it is not your responsibility?

            68.42% Yes

            31.58% No (17B-3)

-If you use a wheelchair do you put a logo or flag on it to show you are friendly?

            0% Yes sometimes

            100.00% No (17B-11)

-Has dystonia enabled you to meet interesting new people like taxi drivers?

            38.89% Yes

            61.11% No (17B-18)

-Do you see friends and family less often, because of the dystonia?

            69.28% Yes

            30.72% No (1-22)

20. humor

-How do you feel about humor in life right now?

            0% I find humor irritating now

            14.29% Not much seems funny to me

            71.43% I am so grateful for humor

            42.86% I seek out humor to lighten my mood (17B-57)

-humor and dystonia

            16.67% I barely laugh any more

            50.00% It feels good to laugh lately, as if I really need to

            33.33% I try to make jokes about my condition -eg. that I just like to        

                        bang into doorways

            0% I try to think of my condition with humor- eg that life has many twists

                        and turns and you can see most of them on my body

            33.33% I can’t really find humor in my situation

            50.00% I resent people making jokes about my condition

            50.00% I like watching funny movies and reading funny books and it seems

                        to lessen my dystonia symptoms or distract me (39-5)

-Have people looked surprised or even relieved to realize you just said something amusing?         
            50.00% Yes

            50.00% No (20B-6)

-Do you sometimes have funny thoughts about dystonia and how odd this all is?

            75.00% Yes

            25.00% No (17B-24)

-Does thinking of it as a monster disease and giving expletive names for the muscles make you feel better?

            33.33% Yes it’s fun to vent or see humor

            66.67% No. I take it seriously only (17A-64)

K. Analysis

surveys on mood

There were several surveys about mood. The general introduction survey had questions on mood. Specific surveys also were about mood and ‘outlook’ though it was discovered that the questions overlapped so their results are combined here.  The follow up surveys  similarly had one about survey mood and one about outlook and their results were also added to this one analysis. In addition, many of the separate surveys about coping, and about individual body parts occasionally touched on mood and mental health issues so their result were also included in this analysis.  This means the questions on mood were many, with occasional overlaps. Questions about mood sometimes occur in unusual circumstances  and it may be easier to get patient response if they are not all in fact in one survey from the patient point of view.  An analysis however is likely more efficient to put all results in the same group.

Asking questions about positive attitude, determination and coping tend to be problematic because there may be a sense that the question itself suggests the best or ‘mentally healthiest’ answer. To avoid such biases to survey questions, it may be useful to insert the attitude questions through any survey series, and useful to ensure that where possible they do not carry that same implication of ‘right’ answer.

causes of mood

Moods are complicated to ask about. Though it is usually easy to identify a mood – anger, fear, joy- it is not always clear what its source is. The complexity of a person’s day itself creates mood shifts as do life crises and aging.

Respondents were asked to identify their moods. Whether dystonia causes those moods is however not always clear. It is often easy to notice how symptoms or diagnosis impacted life  at first but over time life itself presents challenges also. The surveys looked at other stressors, and at coping with other stressors. 

Some pills affect neurotransmitter levels and themselves can change moods. Some moods seem due to dystonia such as sadness of having any chronic condition, the need for treatment, changes in lifestyle, the side-effects of pills. However it was considered useful to help patients identify logical other reasons for their moods, normal life challenges that would affect anyone’s moods.  To do so may help patients understand their own situation and feel more normalized and accepted.

Asking people about personal stressors is difficult given the concerns for privacy. For some there are problems admitting even  anonymously that there is a problem in sensitive  areas such as family relationships, career or finances. The questions were derived from studies of depression and anxiety and asking them seemed important in treating the whole patient. However patients vary in willingness to even consider such issues. What was sought however were statistical patterns only, to examine how dystonia is only one of the features of a patient’s life.

Personality type   – quiet, stoic, private

The surveys indicate that those with dystonia are often quiet and endure suffering without much complaining.  It is not clear if this is a personality feature new since diagnosis but it seems to be a part of their nature before .  People with other chronic conditions often also over time develop a quiet calm and resilience. However those with dystonia historically have been mocked and not believed so a reluctance to talk about it may be a vestige of such negative experience.

Many of those with dystonia seem high achieving and intensely driven. They may be a demographic that pushes themselves, and internalizes some of their struggles. This may be a strength  in terms of success, but a challenge medically. Responses included:

100.00% I usually say I’m doing all right

88.89%  I am by nature independent and prefer not to ask for help

85.19% I was not so upset at diagnosis that  I had trouble making decisions

69.57% I take a deep breath and on purpose try to not add stress to the dystonia

66.67% I don’t want to worry those I love

60.00% I sometimes tell others I am just tired

60.00% I sometimes just let others think I am hoarse or have laryngitis today

50.00% I try to hide my pain

50.00% I live each day as if I just got bad news and I took it  with radical acceptance

33.33% Some are sad to see me in pain so I try to not look like I am in pain

25.00% I resist crying and try to just soldier on

20.00% I sometimes tell others I have a cold

16.67% I wish I could cry . I feel a burden of sadness in me

16.67% I am trying to act like I am OK and others should not interrupt the performance

12.50% I don’t feel a need to cry

sadness

Respondents indicated high levels of sadness, especially at first.

75.00% I usually or sometimes find it hard to wake up and face the day

74.07%  I sometimes just want a good cry

67.86% My only escape from worry was or sometimes is sleep

33.33% It still shocks me and saddens me that I have dystonia

30.43% It’s sort of pointless to dress and look good

29.63% For a time I felt too sad to cry or laugh

16.67% Since diagnosis, I am sadder and cry more often

8.33%  I suppress my thoughts more often now

8.33%  I have  become sadder than I’d like

4.55% I find it hard to be grateful when I am in such discomfort

reasons for sadness

Respondents indicated many sources of sadness, some because of the condition itself and some because of the lifestyle changes or losses it brought.

85.71% went through “Why me?” about getting this disease

83.33%  I have had to cancel some plans and this makes me sad

80.77%  The pain so bad it is occasionally or often hard to care about other things

66.67% I am sad mostly for what I can do less now for hobbies and activities

51.50% have no goal so important it puts the dystonia second

50.00% I resent people making jokes about my condition

47.06% for a while I was  sad when dystonia moved to a new part of  body

41.18% I was sad for a long time when dystonia moved to new part of body

37.50% When I am in pain, time goes slowly

34.78%  I am still am struggling to see the ebb and flow of the condition

29.17% It has taken away a lot of what I was

29.17% I am lonely and wish I had more social life

16.67% It is frustrating to get a card that says “Get well soon”

16.67% I sometimes am amazed that others older than me are healthier

15.00% I am really struggling with this pain most of the time

ways to express sadness

A large number of respondents report that they accept sadness but just do not dwell on it.

83.33% I sometimes just let myself be sad and then get over it

62.50%. I permit myself a pity party occasionally

47.83% I accept that I’ll have sad times and better times

13.04% I have big outbursts and then feel better

frustration with medical science

75.00% I sometimes feel irritated that science has not cured this yet

62.50% I have decided not to blame doctors or myself and accept it is what it is

54.17% I am dismayed at how little is known about dystonia

lack of humor

The use of humor to deal with chronic illness is controversial.  Though some respondents indicate that humor is helpful and they seek it out, they express a real need for timing and  sensitivity.  Jokes that insult the patient are seen as cruel. Jokes that ignore the patient’s distress are seen as insensitive. People differ widely in where they find humor even without dystonia so though humor can be powerful to help, respondents indicate that there are times when it is not appropriate.

33.33% I can’t really find humor in my situation

16.67% I barely laugh any more

14.29% Not much seems funny to me

lack of support

28.57% Nobody seems to understand me exactly

anger

Anger was directed widely and seemed most intense in the earlier stages of dealing with the condition.

71.43% for a time have a cynical attitude to doctors or medicine

44.44% angry at your body at first or still sometimes

37.50% I still struggle with occasional anger

33.33% I am angry at other diagnoses that later proved inaccurate

32.00% I am angry still at those who treated me like it was due to stress

27.27% I am angry at my body

7.41% I was  frustrated about diagnoses that later provided inaccurate

Reassuring thoughts

Respondents reported experiences of relief at some features of their situation.

87.50%  I have had dystonia long enough it is familiar now and less scary

75.00%  I am relieved to hear that it does not usually affect heart

71.43% I am relieved to hear that it is not linked to dementia

71.43% I am relieved to hear that dystonia does not have primary effect on bones

64.29%  I am relieved to hear that it does not affect blood circulation

60.71% I am relieved to hear that it rarely affects breathing

60.71% I am relieved to hear that dystonics generally have normal metabolism

60.71% I am relieved to hear that bladders muscles are rarely affected

60.71%  I am relieved to hear it is not linked to deficits of cognition or memory

57.14% I am relieved to hear that some have partial or full remission

57.14% I am relieved to hear that it is not linked to diminished intelligence

57.14% I am relieved to hear that dystonia can stabilize

57.14% I am relieved to hear that anxiety does not alter dystonia process

57.14%  I am relieved to hear that dystonia not caused by emotional imbalance

55.56% my body is my ally and we’re working on this together

53.57% I am relieved to hear that headache medications are not linked

50.00% I am relieved to hear that it rarely changes life expectancy

50.00% I am relieved to hear that dystonic tremors do not alter consciousness

45.83% sad for the famous with dystonia but relieved I’m in good company

42.86% I am relieved to hear that most dsytonics are in good health otherwise

42.86% I am relieved to hear that general anaesthetics are not linked

42.86% I am relieved to hear that dystonics are often very smart

29.17% I have decided to still be the same old me

25.00% I feel less stigma learning some famous people have dystonia

21.43% I am relieved to hear that radio therapy does not generate dystonia

Lack of information

Respondents reported lack of information about their condition. There are few books about it. The few biographies that have been written are usually small press  and special order only  There are support groups and associations but they are often not widely known and among the public dystonia is not a term most recognize.  The surveys indicated that most patients had trouble getting information about what wanted  to learn- about life expectancy, cognitive function, and basic organ function.

78.57% Being diagnosed with dystonia was the first time I heard of dystonia

64.29% I am anxious to find out if dystonia passed on genetically

42.86% I did not know that dystonics are often very smart

35.71% I did not know that general anesthetics are not linked

32.14% I did not know that most dystonics are in good health otherwise

32.14% I did not know that anxiety does not alter dystonia process

28.57% I did not know that some have partial or full remission

28.57% I did not know that radio therapy does not generate dystonia

25.00% I did not know that it rarely effects breathing

21.43% I did not know that bladder muscles are rarely affected

17.86% I did not know that it does not affect blood circulation

17.86% I did not know that headache medications are not linked

17.86% I did not know that dystonics generally have normal metabolism

17.86% I did not know that dystonia tremors do not alter consciousness

17.86% I did not know that dystonia not caused by emotional imbalance

17.86% I did not know that dystonia can stabilize

14.29% I did not know that it is not linked to dementia

14.29% I did not know that dystonia does not have primary effect on bones

10.71% I did not know that it is not linked to deficits of cognition or memory

10.71% I did not know that it does not usually affect heart

7.14% I did not know that it rarely changes life expectancy

7.14% I did not know that it is not linked to diminished intelligence

The public lacks  information

Respondents indicated that those around them rarely had heard of dystonia and  on seeing their symptoms often did not understand them.  Responses varied about whether the person with dystonia  made a point of explaining the condition or not.

94.74% I appreciate when someone asks me about what dystonia is

29.41% My jerky movements may look like I am upset
47.06% My stiff body position may look like I am upset

23.53% My tremor may look like I am cold

20.00% I say I have dystonia so people become familiar with the term

17.65% My tremor may look like I’m scared

13.04% I think some family were  afraid they might get dystonia one day too

Not believed, not understood by others

The surveys found some misunderstanding by others, by the public and occasionally by medical professionals though most said that was not the usual response.

65.38% I  had to endure cruel looks but not many

44.44% I had someone treat me as if I was awkward, clumsy or lazy

43.24% I had someone treat me like I was faking the dystonia

38.89% People looked surprised that I just said something smart

38.16% A stranger treated me like I was mentally handicapped

33.33% People have mocked me behind my back

33.33% People have called me crazy or insulted me to my face

19.23% I had to endure hurtful remarks from strangers often

16.67% People have been irritated if I am slow and awkward

9.52% Someone told me that kids would be scared of me

7.69%  I had to endure cruel looks from strangers a lot

Things learned, positives of dystonia

Some patients reported that they now had new understanding, compassion for others, and admiration. Many reported they had found new strengths in themselves.

100.00% I understood better now the heartbreak of others in their own situations

89.47% I felt humbled to see others with terminal illness when mine is not

72.73% I have new admiration for people who face cancer,  MS, serious illness

66.67% When a new problem happens I have  developed  coping strategies

65.00% I have become more pensive, philosophical or spiritual because of the dystonia

47.83%  Dystonia has made me a better listener

45.45% I have new admiration for seniors who went through the Depression

38,89% Dystonia enabled me to meet interesting new people like taxi drivers

36.36% I have new admiration for war survivors

33.33% I have discovered a good part of my personality

9.09% I have new admiration for politicians who face economic or health crises

Other stressors besides dystonia

The surveys examined other problems faced by those with dystonia. The number of such problems may match those of the general population though there do seem to be among dystonics a higher incidence of other medical conditions, allergies and relatives with other medical conditions. These correlations may be useful in the tracing of causal links to dystonia.

Some of the other stressors may be related to dystonia, if it resulted in having to move to a new residence, reduce paid work hours.  Some of the stressors may be reduced by treatment and others may be a result of treatment – such as weight gain due to pills, or better sleep due to pills. The surveys did not trace cause of these new stressors and that may be a useful line of inquiry.

57.14%  I have another chronic medical condition like asthma, diabetes

47.37% Weight has become a concern for me

42.86% I lost touch with a close friend
45.00% Someone close to me has died

42.86% Someone near me is dealing with a major medical problem

42.86% I have significant food or other allergies or sensitivities

38.89% My paid employment situation changed recently

33.33% I recently moved to a different residence

23.81% Someone near me is having employment problems

23.81% I have recently gone through marriage or relationship upheaval

20.00% My grandchildren have serious problems I are concerned about

19.05% Someone near me is in financial or legal trouble

19.05% I have ongoing problems with a partner or spouse

15.00% I have ongoing problems with a sibling, child or grandchild

14.29% Someone near me is in separation, divorce, relationship upheaval

14.29% Someone near me is dealing with addiction

14.29% A family member recently moved out

10.00% My adult children are struggling with parenting

9.52% I recently had a housing emergency like a flood or rodent infestation

5.26% I am having problems with a co-worker or boss

4.76% I am having problems with a neighbour

Handing stressors in life now

People with dystonia sometimes note that any new stress is harder now because their body is already tense. However knowing that, many reported  that they now put new stressors in perspective and are able to handle them separately from the dystonia.

95.24% I am  optimistic that somehow I can get by financially

65.22% I feel I can handle most things OK

47.37% My stressors are logical. I am mentally still well

42.11% I am sad to think of stressors feel good understanding them

33.33% Other problems like broken appliances upset me less than they used to

33.33% I am sadder in bad weather as if my problems have doubled

30.43%  I am very emotional in new stressful situation

27.27% I  have found it helps to journal my feelings

16.67% Other problems like broken appliances upset me more than they used to

Acceptance, determination, resilience

Though those with chronic conditions often become resilient and cope well, being expected to do so anecdotally is often reported as its own burden. The surveys found a range of attitudes to coping, some that were not always the expected version of heroic. to admit not feeling heroic some days  seems to also be aliberating admission.

100.00% I am sometimes relieved to be alone

90.48%  I am getting to feel more comfortable when alone

88.89% I am pretty sure I can work out ways to address my other problems

84.21% I have decided to show the real me even if mehave a crooked shell
85.00% I have strategies to cope with pain half, most or all of the time

83.33% I give myself permission to not be a hero some days

75.00% I sometimes have funny thoughts about dystonia and how odd this all is

69.57% I dress and look as good as possible despite the dystonia

68.42%  How others deal with my  appearance  is not my responsibility

66.67% I am very used to the idea I have dystonia

66.67% I rest when I need to.

66.67% I do not let dystonia define me. I have other interests

65.22% I try to accept dystonia and ride it out

65.22%  I am familiar with my condition, try to accept and ride it out

62.50% I just face one day at a time and try not to look too far ahead

60.87%  My family are all coping better now that we understand dystonia better

58.33% I try to be good at tasks but I accept I don’t have to be perfect

54.17% I don’t feel guilty for leaving events a bit early

50.00% It seems like dystonia throws me a lot of curve balls

50.00% I let dystonia do its thing and have chosen to not let it upset me

48.15% I am less embarrassed now

42.11% I plan my days so I can look forward to getting up

39.13% I am figuring out ways to mostly be calm

33.33% I can be happy as I wait for a cure to be found

33.33% I am relieved dystonia gives me an excuse to not have to do some things

33.33% Facing dystonia takes courage and luckily I am a fighter

33.33% Dystonia is not an enemy for me. It is just something I have

32.00% I used to explain how I look. Now I don’t bring up automatically

25.93% I have accepted that it is what it is, I know what I have

16.67% When I get out of bed each day. I think “Take that, dystonia!”

11.76% I am learning not to misjudge my tremor, tightness as emotional         

Social insecurities 

Respondents reported significant concerns about social interaction due to dystonia.

57.69% I worry that I seem unfriendly

52.00% I worried at first or still do that people think of disability when they see me

48.15% I still feel a bit embarrassed

46.15% I felt at first or still do that people avoid looking directly at me

36.00% I worry what I look like doing when doing a sensory trick

25.00% There are many things I don’t say now because it’s hard to talk

24.00% I feel like I have to explain to others how I look

12.50% I was worried family was embarrassed but they are not

Frequency of social encounters

Respondents indicated greater care in deciding what social encounters to continue.

91.67% I still go to family gatherings

79.17% I spend less time at social events than I used to

74.07% I have avoided people because of the dystonia

69.28% I see friends and family less often because of the dystonia

Encounters with strangers

Despite the survey results that found being mocked and disbelieved was part of the experience for many, an even larger number reported positive treatment by strangers.

75.00% Store clerks and strangers are often very kind

66.67% People have been kind to me waiting patiently for me to talk

50.00% People have been kind opening doors, helping me get seated

42.31% I did not have to endure many hurtful remarks from strangers

38.46% I never had to endure hurtful remarks from strangers

14.29% Sometimes people did look scared of me

Family and friend acceptance

Respondents indicated that just as they had to adjust to dystonia and get used to what it demands and permits, so too were those close to them on a journey of discovery. Their sadness and acceptance were reported.

90.00% I appreciate when someone asks me how you I am doing with the dystonia 60.87% My family was sad to see my dystonia at first

50.00% People have included me in chats and news and jokes

50.00% My dystonia bothers me less if I am with people I love

33.33% Sex may be a bit uncomfortable but it is worth it

17.65%  People hesitate to tell me sad news as if they are not sure I can handle it

16.67% Some people seem embarrassed to be seen with me

Decisions about social experience

Respondents reported high incidence of positive experiences as they navigated new ways to interact with others.

83.33%  I set boundaries so people who are hard to deal with do not upset me

81.82% I found that people usually aren’t thinking of me negatively

80.00% Sometimes I explain my situation and sometimes I don’t

76.19% I realized kids were not scared, just curious

50.00% I avoid toxic people and ‘energy vampires’

50.00%  People looked surprised or even relieved when I just said something amusing

20.83% I try to turn it around and show interest in others

Self esteem

Respondents reported severe dips in self esteem especially at first. This was not just due to physical appearance but even from concerns about social acceptability or competence. The drop in self esteem was profound for some, but many reported recovery from it.

I00.00% I deserve to eat meals Ienjoy

83.33% I am a bit of a misfit but then, so is everyone

77.78% I felt unattractive because of dystonia sometimes or nearly always

75.00% I try to be my own friend

72.73%  I feel proud of my body for how it tries to manage

66.67% I was embarrassed at first

66.67% I have fears about being on camera or speaking in public

65.22% I am willing to have mypicture taken, even if the dystonia shows

53.85% I lost confidence and felt less competent

50.00% I try to smile at my reflection and feel OK about my appearance

50.00% I am  sad looking in the mirror half the time of more

50.00% I am a friend of mine

50.00% I have problems with muscle control but not with emotional self- control

42.31% I have avoided having my picture taken because of the dystonia

37.04% I still struggle to like myself

34.78% In a picture I like to be in the background or to somehow hide the dystonia

33.33% At night in my dreams I have dystonia

33.33% At night in my dreams I do not have dystonia

32.14% For a time after diagnosis  I stopped caring about my hair or appearance

29.41% My stiff body position may make me feel upset

25.00% With medication I am on, I have more trouble remembering some things

25.00% I struggle with the idea of being my own friend

22.22% I felt guilty about who I am, at first

15.38% I never felt less competent at things I love

15.38% I did have a dip in competence but got it back

12.50% I can think of examples clearly. Dystonia helps ignore some distractions

12.50%  On appropriate treatment, I  follow people’s arguments quite well

Fears

The biggest fear of patients was about the course of their condition and what may lie ahead. Fears of being alone, of choking are survival type fears that seem common, especially at first also. Social fears also were reported.

74.08%  I often or once in a while worry that my dystonia may get worse

70.37% After diagnosis it was at first scary to be alone

64.29% I am more hesitant now about any change in routines

51.85%  I worry what will happen to my family if my dystonia gets bad

50.00% I have fears of falling or bumping into things

33.33% I am sometimes afraid to be alone because of dystonia

33.33%  I have fears about eating problems or swallowing problems

17.86% On remission I worried that  the dystonia would return

17.86% I often or once in a while am sp nervous at the doctor’s that the walls close in

16.67% I was scared no one would want to date or marry me

8.33% I was scared no one would want to be my friend

8.33% I was scared that current close family would drift away from me

Anxiety and dystonia

Most respondents reported that stress and anxiety were key parts of facing dystonia but very few felt that stress had caused the dystonia.

anxiety leading to dystonia

44.00% I never believed it was all just from  stress

20.00%  For a time I believed the dystonia was due to anxiety

dystonia leading to anxiety

87.50% Dystonia has caused me some anxiety

medicine and anxiety

29.63% Medicine has no effect on my anxiety

22.22% Medicine seems to reduce my anxiety.

3.70% The medicine seems to add to my anxiety

New purposes, goals, reasons to go on

Respondents reported high levels of commitment to a purpose beyond dystonia.  This determination seems key to will to live. Absence of it may be a serious problem.

90.48% There people are who need me and to whom I can still be helpful

70.83% There are days I don’t want to talk about dysdtonia. I like to move on

66.67% I still speak up when it matters

50.00% I have courage because a person or pet needs me

50.00% I still set a goal and do it, though it may take a while

48.50%  I have a goal that is so important to me that puts the dystonia second

42.86% I seek out humor to lighten my mood

33.33% I have courage.  have other things  I need to do

26.92% I never lost any interest in things I love

20.83%  Having an interest helps me to strive for perfection

15.38% I did lose interest in things I love but I got it back

15.38% I lost interest in things I loved and saw no point in them

33.33% I try to make jokes about my condition

Lack of support network

Respondents reported high rates of feeling not fully understood or supported. This is likely common for anyone with a rare condition.  If dystonia were better understood, the general public, family and friends would likely be able to be more supportive.  The medical community cannot itself be the entire support system but its kindness clearly was reported as vital. 

76.19% There is no one who advocates for me with doctors

66.67%  Some members of my immediate family live far away

42.86%  I have lost touch with a close friend

33.33% I have not felt much support from family

28.57% Nobody seems to understand me exactly

 Support network

Respondents who felt they did have support mentionned both medical community support and family and friend support.

100.00% I have a few people in my life who have been wonderful through all this

100.00% I confide in a family member or friend

100.00% There are people who love me who would help me in crisis

84.00% Over time others cheered up around me and got used to me having dystonia

76.27% There is someone whose love for me through it all, touches me profoundly

75.00%  I am confident there are services that can help me if I need help

71.43% There is someone in my life who seems to understand how I feel

70.37%  I am able to get the help I need

66.67%  Family have been supportive and kind

66.67% I never did fear loss of support because great people stood by me              

66.67%  I want others to care how I feel but not always to talk about my condition

65.00% Someone has amazed me by how much they help me still enjoy normal things

60.00% My care team has gone out of their way to learn more about dystonia

56.52% I realize family has been on a big adjustment journey too

50.00% My children, grandchildren and friends are my medicine

47.06% Others around me are learning that my emotions are normal

34.78% My family seem happier if I am coping well

33.33% My family just accept me

23.81%  There is someone who advocates for me with doctors

16.67% My family are protective

Others with dystonia

The discovery of others with the same condition has been found helpful to those with other illnesses as cancer support groups, bereavement support groups, diabetes support groups abound. It is more difficult to find others with dystonia both because of its lower incidence and because of the stigma it has had historically. However the surveys found that meeting others in person or online who also have dystonia was usually but not always a positive experience.

78.95% I felt humbled seeing someone whose dystonia was worse

71.89% I feel comfortable and accepted with another who has dystonia

53.22%  I am sad to see their suffering of others with  dystonia

52.38% I know someone else with dystonia

47.62% I do not know anyone else with dystonia

39.27% I feel cheered up to face things together with another with dystonia

36.05% I find role models and inspiration in others with dystonia

33.33% I confide in someone else with dystonia

Optimism

Respondents reported some optimism.

50.00% I am proud that I did these surveys. helping advance medicine

50.00% I like watching funny movies and reading funny books and it seems

33.33% I believe there will be a cure for dystonia

33.33% I used to think there would be a cure soon and now am less sure

29.17% I am reassured good people are working every day to find a cure

16.67% I am optimistic that a cure will be found for dystonia

12.50% I am optimistic that my medical treatment is going to help me

4.17% I am optimistic my diet and daily adjustments are going to help me

4.17% I am optimistic my exercise are going to help me

Gratitude

Respondents reported quiet sources of happiness. The ability to go on despite no improvement and to even find joys was clear in many of the surveys, though the pain was evident and never denied.

80.95% Watching a child or pet helps me appreciate little joys

71.43% I am grateful for humor

50.00% It feels good to laugh lately, as if I really need to

40.91% I appreciate sleep more now

36.36% I appreciate nature more now

9.09% I appreciate music more now

9.09% I appreciate books more now

I. Conclusion:

The surveys indicate that it is important to recognize the patient as a full person with a range of normal emotions and a wide range of experience. Treatment with a pill does not address many of these stressors.

Some neurologists have proposed that when dystonia patients have an annual consultationthat a social worker, a nutritionist, a physical therapist and a psychologist join the neurologist to each share input and ideas with the patient at the same time. This approach may take longer but may help the patient feel heard and understood, and may help find appropriate supports that are not just medication.   Patients report that when medical professionals or friends discuss the dystonia with them, if the other person cannot help but cares and understands this is a challenge, that itself is helpful. 

The survey questions about support network for the patient may be particularly important. The strength to get through the day and the will to do so, is  closely linked to feeling valued, understood and cared about.  Doctors may think patients seek only solutions and it is evident they would like them. However the surveys suggest and even doing the surveys suggests that what patients also want is to be understood.

One of the survey questions at the very end asked if the person had done the questionnaires in the hope it would lead to an end to dystonia 100.00% agreed. The feedback on the website also  indicated that just being asked, just feeling less alone, was part of the answer.

support network

Though dystonia can strike people at any age, some forms do seem to occur more often in middle age or senior years. See surveys on identifiers and on first diagnosis.

The fact of being senior in particular may affect options for support network. In youth a child usually has parents as a support. In middle age though others may care, siblings may have moved apart to other cities, and friends and colleagues all have their own busy lives. Parents of middle aged patients are not often able to help with care needs physically though their emotional support is often vital.

When a person is a senior, those who care may be many but may live far away since in many economies it is common for adult offspring to live not just in different cities but often in different countries from the parent. As a person ages, their own lifetime friends have their own medical concerns and some pass away so there is a natural eroding of the potential support network just with age.

However the surveys suggest that family and friend often go to extraordinary lengths to provide emotional and practical support. The surveys indicate a wide diversity of how much support people feel.  These may seem like minor questions but they may be very important tapping not only  Since that informal support matters, it may be useful to encourage social policy and tax structure to enable that level of health care as a first tier of the health care system.