Acceptance

General
1

Hi everybody,

I’ve come along ways from when I was officially diagnosed with ataxia (cause unknown). For the first eight years I was diagnosed with B12 deficiency ataxia (I was deficient), Vitamin E deficient ataxia (I was deficient), annd essential tremors (I have tremors but very severe unlike fine tremors essential tremors produce). So I lived with the hope that I didn’t have an untreated, incurable condition. In 2006 my hopes were dashed away when the movement expert diagnosed me with ataxia.

I went through the stages of grief, anger, denial, bargaining. It’s hard to have this disease, it seems to affect all your functions. It leaves you no dignity. But I’m still alive, and that is something.

I use to show, train, and ride horses. I was part of a public speaking club (Toastmasters). I was outgoing and confident. Now I rarely leave the house except for doctor’s apppointments. I use a stroller to get around, rarely get out of my pajamas, and the effort just to brush my hair can be exhausting.

But I’m still alive. I learned how to swim at the age of 53 (I’m now 55), I’ve learned how to draw, and I have friends (that’s you guys). So for me life is worth living.

My question to all of you is:

  1. How long did it take you to accept this disease?
  2. How long before you were properly diagnosed?
  3. Have you ever been treated badly by the medical community?
  4. What new hobbies have you taken up?

This is something I’ve wondered about. I’m not taking a survey. I want to know how you are dealing with ataxia.

Thank you in advance,

Sara

2

Hi Sara - I was very touched to read your message - life can be so, so cruel. I have been very fortunate in that my late onset CA was only diagnosed at about 62 years of age - I am 66 now. However, I was never as gifted with confidence as you were in public speaking and training horses etc so have not had so much to lose. I dont have tremors and my unsteadiness is relatively mild. my ataxia was triggered following foot surgery. I thought it was to remove a bunion but it turned out to be a 3-part operation to straighten my foot and insert metal pins.

Since my diagnosis, I joined Ataxia UK and followed their recommendation to discover what type of CA I have and have consquentally had countless tests since 2004. I have never really accepted it but I suppose I have accepted that I cant do many of the things I used to - basically, I cant be spontaneous. So -

  1. Is I havent
  2. Is I havent
  3. Is not badly as such but a certain amount of indifference
  4. I have volunteered to coordinate Ataxia UK Ipswich & Colchester Support Group and that is my hobby - I love it.

Thanks for caring Sara and I hope you get lots of response. Take care, Patsy

3

Thats good that you can still draw despite the tremors. How are you managing to do that? I used to love sketching and water colour painting but now I struggle to write a birthday card, anything longer than my signature really.

I tend to have jerky muscles though and arms go stiff and tense when trying to control a pen to write as opposed to a constant parksonian-type shakiness.

Mine came on quickly due to my thyroid starting to shut down in my early thirties and I was in wheelchair by first 18 months and my speech was starting to be affected within the first 2 years. Mine has been a steep learning curve for last 7 years with a disability which seemed to change as soon as I got used to one level of disability another symptom would appear. Mines in most of my muscles now except my eyes (thankfully, as I am been deaf since age 16 - not connected to ataxia)

Having adapted to been deaf at a young age and having to learn to lip-read I found learning to handle a wheelchair much easier in comparison and was soon back on my feet (so to speak) in early days.

However since last year when it also started in bladder muscles and arms/hands as well things started getting a bit more challenging. I did lot more exercises to cope with arms but found bladder issues embarrassing and humilating so wouldnt leave home unless I knew there was a disabled loo I could get in and wouldnt drink at all if a certain distance from one.

Recently I have found communication problems the most frustrating and I’m still dealing with this. I will be receiving my first communication aid soon as visitng health professionals are having real difficulties understanding me and its a nightmare trying to get an interpreter to sign for me. (I’m in small village in Yorkshire there aren’t many around here)

None of my neighbours can sign so I’m very isolated socially, I’m hoping the lightwriter will give me some confidence back to speak to people other than only using it with health professionals in my own home or their office.

At moment I have mixed feelings about it, part of me is sad that I have to use one to communicate cos I can barely get my name out, not something I thought would have happened before I had even reached 40! Another part is just relieved that I at least have some way to communicate in an emergency as I get sudden allergic reactions and have had chest pains in the past too.

I havent had confidence to join any new groups as I dont have an helper (again… cos I couldn’t find anyone who knew how to sign) or transport as I couldnt communicate with people there seemed little point, but I do keep myself busy around the house. I have a dog to walk twice a day I use mobility scooter to take her round village, I do physio exercises everyday twice a day

I have been learning alot about Assistive Technology as I was struggling to use my PC and also have my own small group for people who are losing speech or have never spoken and use communciation aids and assistive technology. I feel that has helped me as I feel a little more in control that I know whats out there and what I would need as things progress further.

Acceptance is a long slow process and difficult when you have a disability that changes every few years just as you get used to one level of disability. Here’s my blog if you want to read more about living with multiple disabilties:
http://forum.livingwithataxia.org/profiles/blogs/adapting-to-living-with

Kati

4

Hi Sara,

I don’t think anyone can actually accept ataxia, but we learn to live with it, adjust our lives to it, be angry about it and frustrated by what it can do to us.
I look back at what I could do alot less now and look forward more. I seem to have faught every step of the way to get help of any kind.
My life was very active before, I played hockey,swam,went to the park, played games with my son. I was very independent and now I’m very dependant on others.
I can empathise with many things you have said.

1.I haven’t
2.It took over 3 years and 4 consultants and lots of pushing.
3.Being told that ‘things’ are not that bad and ‘you could be in a wheel chair’ was not helpful when they didn’t actually know what it was. I have found alot of ‘professionals’ with no knowledge about ataxia and no help to suggest.
4.Hobbies, what are they!! I am happy if I get through the day and would like to do something other than just get by.

I must admit that I am always looking for ways to do things to make life easier and am very accepting of the need for aids and people to help me do the best I can with what I’ve got.
I hope this is what info you wanted

Take care
Alison

5

Thank you Patsy for your reply,

I know what you mean about not being able to be spontaneous. Now to leave the house it’s such a “to do” fuss. I don’t drive anymore so my husband has to drive, load up the stroller, unload it, get me over curbs, and open doors for me. For someone that was independent, this really bothers me.

Do you feel the surgery on your foot was the start of the ataxia? Some people claim that foreign objects in the body can actually cause autoimmune ataxia. I don’t know.

Your dedication to your support groups is fantastic. Keep up the good work! The fact that you love it “is icing on the cake”.

Sara

6

Hi Kati,

The way I draw is to keep my arms close to me, the further they are out from my body I lose control, so what I do is curl up in my easy chair and keep my sketch book on my lap. My arms get tense too, and my tremors become uncontrollable, this way I keep my strokes shorter and in control.

I found it interesting about your thyroid. That’s when my problems started too! Have you ever heard of Hashimoto’s Encephalopathy? This is where the brain is attacked instead of the thyroid, but it starts as a thyroid disease. Your levels T3, T4, and TSH maybe normal but you can still have an infection in your brain. There’s additional tests that can be performed to find out if this is your problem, read this link at your convience: www.thyroid-info.com/helpsfaq.htm - 62k - Cached.

I hope your lightwriter helps you!

Sara

Kati said:

Thats good that you can still draw despite the tremors. How are you managing to do that? I used to love sketching and water colour painting but now I struggle to write a birthday card, anything longer than my signature really.

I tend to have jerky muscles though and arms go stiff and tense when trying to control a pen to write as opposed to a constant parksonian-type shakiness.

Mine came on quickly due to my thyroid starting to shut down in my early thirties and I was in wheelchair by first 18 months and my speech was starting to be affected within the first 2 years. Mine has been a steep learning curve for last 7 years with a disability which seemed to change as soon as I got used to one level of disability another symptom would appear. Mines in most of my muscles now except my eyes (thankfully, as I am been deaf since age 16 - not connected to ataxia)

Having adapted to been deaf at a young age and having to learn to lip-read I found learning to handle a wheelchair much easier in comparison and was soon back on my feet (so to speak) in early days.

However since last year when it also started in bladder muscles and arms/hands as well things started getting a bit more challenging. I did lot more exercises to cope with arms but found bladder issues embarrassing and humilating so wouldnt leave home unless I knew there was a disabled loo I could get in and wouldnt drink at all if a certain distance from one.

Recently I have found communication problems the most frustrating and I’m still dealing with this. I will be receiving my first communication aid soon as visitng health professionals are having real difficulties understanding me and its a nightmare trying to get an interpreter to sign for me. (I’m in small village in Yorkshire there aren’t many around here)

None of my neighbours can sign so I’m very isolated socially, I’m hoping the lightwriter will give me some confidence back to speak to people other than only using it with health professionals in my own home or their office.

At moment I have mixed feelings about it, part of me is sad that I have to use one to communicate cos I can barely get my name out, not something I thought would have happened before I had even reached 40! Another part is just relieved that I at least have some way to communicate in an emergency as I get sudden allergic reactions and have had chest pains in the past too.

I havent had confidence to join any new groups as I dont have an helper (again… cos I couldn’t find anyone who knew how to sign) or transport as I couldnt communicate with people there seemed little point, but I do keep myself busy around the house. I have a dog to walk twice a day I use mobility scooter to take her round village, I do physio exercises everyday twice a day

I have been learning alot about Assistive Technology as I was struggling to use my PC and also have my own small group for people who are losing speech or have never spoken and use communciation aids and assistive technology. I feel that has helped me as I feel a little more in control that I know whats out there and what I would need as things progress further.

Acceptance is a long slow process and difficult when you have a disability that changes every few years just as you get used to one level of disability. Here’s my blog if you want to read more about living with multiple disabilties:
http://forum.livingwithataxia.org/profiles/blogs/adapting-to-living-with

Kati

7

Is that what you have?

I was born with my thyroid not working so I been on thyroxine since 23 months old as I mentioned in my blog (link in above post).

The problem I had is my body appeared to have stopped, or was having problems with converting T4 to T3 so although I was still taking my tablets my T3 levels were dangerously low and my TSH levels were sky high. This started happening just after my dad passed away from cancer and I have since read some info that stress and emotional shock can cause the body to produce something called ‘Reverse T3’ which doesnt actually do anything.

It took them so long to find it cos the first neuro dismissed ataxia caused by Hypothyroidism to start with and I was sent for tests to look for MS. He said it was ‘extremely rare so therefore unlikely’… Last year I found out quite by accident that it said on my medical records that they thought the Ataxia had been caused by Chronic Congenital Hypothyroidism (since birth)!

Kati

8

Hi Alison,

I too, have accepted that I have ataxia. But where I differ from some people, I want to know why. If this disease is something I’ve passed to my daughters, the guilt would be unbelievable!

It’s really hard to be dependant on others, though I must say my family is very supportive. But what about people that don’t have a support system? They are the brave of the bravest. My heart goes out to them.

You were very active, you don’t have any hobbies now?

Yes, what you stated is what I was looking for. Thank you.

Sara

9

Wow Kati,

You certainly have problems with your thyroid, and I thought I was bad!

The docs haven’t been able to give you the correct dosage to control your levels?

I don’t know if I have Hashimoto’s disease. I’m seeing an endocrinologist the 10th of March to ask for additional bloodtests, outside of the regular tests for thyroid, which has normal levels. I hope this is what I have (I know, sounds strange), then at least my girls won’t become burden with hereditary ataxia.

Keep your fingers crossed for me!

Sara

10

Thanks for response Sara, Not sure about the foot operation being cause of ataxia - it was certainly the trigger but on reflection, I have always had inturned right foot and overcome unsteadiness in my youth. As the body gets older it does become more difficult to compensate and achieve things that were once done on overdrive. Patsy x

Patsy said:

Sara McArthur said:
Thank you Patsy for your reply,

I know what you mean about not being able to be spontaneous. Now to leave the house it’s such a “to do” fuss. I don’t drive anymore so my husband has to drive, load up the stroller, unload it, get me over curbs, and open doors for me. For someone that was independent, this really bothers me.

Do you feel the surgery on your foot was the start of the ataxia? Some people claim that foreign objects in the body can actually cause autoimmune ataxia. I don’t know.

Your dedication to your support groups is fantastic. Keep up the good work! The fact that you love it “is icing on the cake”.

Sara

11

Hi Sara

Yes, they got it under control by giving me T3 injections that seemed to have put things back into gear and it started doing it on its own, I’m now just back on T4 tablets.

Sadly it took 2 years to get to the point where they relaised what it was as I was originally thought to have MS, I guess by that time enough damage had been done that some symptoms were irreversible.

I know Hypothyroidism is listed as a cause of OPCA (Olivopontocerebellar Ataxia) also epilepsy meds which I have also been on in the past. It does state in some cases once the underlying cause is treated the condition may not progress any further.

They dont know why I went deaf at 16 either only cause prior was my medication been lowered by 100mcg’s. Neither do they know what caused the epilepsy to start at 4, end at 7, come back again at 27 for a few years. The only one common link is my thyroid levels at the times these things happened. I have also been partially sighted temporarily for 4 months, which was again thyroid related, luckily I have never had that since they got my levels right. There are no signs of Ataxia in my eye muscles at all.

I had home assessment today and physio person said she could see it now present in upper body when she put me through exercises and is coming back in a few weeks with some more information and exercises.

She was pleased though and said I was doing all the right things, that other splints at moment wouldn’t make me be able to walk any more than I can now but in future may need different splints with more leg support to do the same amount for transfers. My arms and gross motor movements are strongest but fine motor skills are clearly more affected. She has gone to look into some kind of stabilising splints for arms or something and is coming back in 2 weeks. Unfortunately there’s nothing they can do for my speech, other than provide me with the lightwriter to make communicating less frustrating with people who dont sign.

She said they didnt know how far it was going to progress or if it might stop at a certain point and not go any further, I think they were expecting it to stop at a much milder stage after they stabilised my thyroid in 2005. But it seemed the progression process had started before they started correct treatment. Which is still something that makes me feel angry, but they insist once the progression of these conditions start there’s often little you can do to stop them, only to try and slow them down.

She mentioned use of drugs in future and keeping an eye on it affecting my swallowing to a major degree with it been in my throat muscles and affecting my speech so severely.

I mentioned Botox but she said thats only useful if its in one or two muscles as its a toxin there’s only so much they can give you and not very useful if you several muscle groups affected at once.

Fingers crossed for you and your girls

Kati

12

Hi Sara
I first became ill at 15 now 34 ,I was told it was a brain tumor but more test later they were 98% sure it was MS then several
years later was diagnosed with CA ,I have found it hard and frustrating at times,I have a very supportive husband and family ,it has been more frustrating over the last 12 months as I had to give up work because I was finding it hard to get about after allot of tests they found out all my muscles are inflamed that is why Im finding it hard to walk (this is not to do with ataxia) ,I am on steriods and cellcept to help this.
I go to physio once a week to help with balance etc(unfortunately after this last 12 months realize I have to work at it and not give up easy to say)
My hobbies I swim twice a week do 80 lenghs ,love swimming because i feel safe
do puzzles challenging ones
recently started making cards
Thats about it try to keep positive and keep battling on,it may take me longer than others but i get there in the end.
Lorna

13

Hi Kati,

MS does resemble this disease so closely, I guess the only way they can tell the difference is with a MRI (lesions vs cerebellum shrinkage) and a spinal tap. You certainly have had a hard time with it all. But you’re spirit is so positive that it gives me pause to think, “the human being is a survivor!”

My youngest daughter also is going deaf. My biggest fear is that this could be ataxia related. Scary. You said your eyes show no signs of ataxia? You do not have nystagmus? That’s unusual for someone with ataxia (at least in my humble opinion).

As far as Botox, I’ve tried that and it did me no good. But it was used to try and control my tremors in my neck and head.

You mentioned that you were angry that your condition was irreversible because it took them (I’m assuming doctors) so long in getting you the right thyroid dosage. (Did I read that right?). If I did I thoroughly agree with you. I don’t know whose more ignorant of this disease, patients or doctors.

Hang in there.

Sara

>

14

Hi Lorna,

Thank you for responding to my post.

You’ve are another one affected so early in life. Can I ask you what CA stands for? Only thing I can think of is “Cerebellum Atrophy”. Am I right?

I was lucky in that I retired from the military just when this disease hit me. So to say I was already out of work, would be a correct statement. I went to school and got a four year degree in computers at the tender age of 49, I was older than most of the instructors! I’ve never worked in the tech world since my disease had gotten bad at that time.

I love swimming too and I agree with you, “I feel safe”. I draw and try to stay in touch with people through this website. I usually do this in the morning because that’s when I have the most energy. The rest of the day I’ll nap. I just don’t have the energy I use to.

Sara

15

Sorry to hear about your daughter.

I dont have it in eyes at all I dont have the nystagmus. Mine’s in throat muscles and legs mostly, with milder degree in fine motor and bladder muscles. I have had chest pains but not sure whether it was related to thyroid levels or muscle spasms. Only happened twice in 2 years. I occasionally get episodes of choking on food but its not something that happens on a regular basis, sometimes I think it was maybe when I had been trying to talk all day if I was out so muscles would then have been very tired by time it got to dinner time? I’m not sure its just a theory, but hasnt happened when i been out all day if I been signing rather than speaking, doesnt happen on daily basis at home when I only have Inca to talk to.

The thyroid is very close to the voice box and the muscles that affect speech I dont know if that is another factor in my case as I suspect my unusual case is a combination of factors not often usually found in one person.

At moment I’m just grateful I can still see perfectly as been deaf I rely on my eyes totally for all aspects of communication. Been partially sighted and deaf those first four months was far worse than been in the wheelchair and been deaf cos you are totally cut off if you cant see well enough to lip-read or see someone’s signs or use hearing to compensate, it was the most terrifying 4 months of my life.

I’m even thinking of having an Advanced Directive drawn up so if it ever happened again (and would be permanent) I can refuse medical intervention, as I would not want to be left like that with no way to communicate at all.

16

Hi SARA.
It was a long time ago I was diagnosed (30 + years) so my memorys not 100% but I’ll do my best to answer your questions. Ataxia affects different people in different ways so this Is of course only relating to my circumstances

1`. I accepted it just about right away. Then disregarded it ie-- put it to the back of my mind. Obviously at times I think about it but not for long. I still have a life to live and can’t dwell on such negative thoughts.
2. Couple of years but I was in no hurry.
3. No, But I realise the G in GP stands for general and Ataxia is a specialised subject so we realy cant expect GPs to know it all. A little understanding & politeness Is about all I ask.
4.My symptoms have been very slow so I’ve slowly adjusted my lifestyle / hobbies from “fast-lane” to “middle of the road”.For example - playing guitar to teaching a bit and listening to music more-- cycling to driving-- walking miles to using a wheelchair for miles & generally doing what I used to do but in different / slower ways. I think computers are a good hobby for Ataxians who perhaps can’t get out much.
So that’s briefly how I deal with ataxia (as you asked) Lots more to it thou. Some accept it, some dont. We must all deal with our own particular symptoms as we see fit.
Don’t know if any of that helps Sara I only hope it might. BILL (William Phillips)

Sara McArthur said:

Hi Lorna,

Thank you for responding to my post.

You’ve are another one affected so early in life. Can I ask you what CA stands for? Only thing I can think of is “Cerebellum Atrophy”. Am I right?

I was lucky in that I retired from the military just when this disease hit me. So to say I was already out of work, would be a correct statement. I went to school and got a four year degree in computers at the tender age of 49, I was older than most of the instructors! I’ve never worked in the tech world since my disease had gotten bad at that time.

I love swimming too and I agree with you, “I feel safe”. I draw and try to stay in touch with people through this website. I usually do this in the morning because that’s when I have the most energy. The rest of the day I’ll nap. I just don’t have the energy I use to.

Sara

17

Hi Kati,

You break my heart. Are the doctors sure it’s your thyroid that’s caused you to lose your eyesight?

I know what you mean about not being able to communicate, that would be terrifying.

You’re probably going to get sick of me telling you this but have tests done for Hashimoto Encephalopathy. If anyone is a poster child for this disease, you’re it! It might turn out to be nothing but at least you tried. That’s how I feel, my appt is the 10th March and I will definately insist on these tests. I’m sure everything will be normal but I’ve got to try. I owe that to my daughters and myself.

The best thing about this disease is that it is treatable and has the same symptoms as cerebellar ataxia. The one thing that is mentioned again and again is that it impairs speaking.

Enough preaching, I hope you have a great day!

Sara

Kati said:

Sorry to hear about your daughter.

I dont have it in eyes at all I dont have the nystagmus. Mine’s in throat muscles and legs mostly, with milder degree in fine motor and bladder muscles. I have had chest pains but not sure whether it was related to thyroid levels or muscle spasms. Only happened twice in 2 years. I occasionally get episodes of choking on food but its not something that happens on a regular basis, sometimes I think it was maybe when I had been trying to talk all day if I was out so muscles would then have been very tired by time it got to dinner time? I’m not sure its just a theory, but hasnt happened when i been out all day if I been signing rather than speaking, doesnt happen on daily basis at home when I only have Inca to talk to.

The thyroid is very close to the voice box and the muscles that affect speech I dont know if that is another factor in my case as I suspect my unusual case is a combination of factors not often usually found in one person.

At moment I’m just grateful I can still see perfectly as been deaf I rely on my eyes totally for all aspects of communication. Been partially sighted and deaf those first four months was far worse than been in the wheelchair and been deaf cos you are totally cut off if you cant see well enough to lip-read or see someone’s signs or use hearing to compensate, it was the most terrifying 4 months of my life.

I’m even thinking of having an Advanced Directive drawn up so if it ever happened again (and would be permanent) I can refuse medical intervention, as I would not want to be left like that with no way to communicate at all.

18

Sara McArthur said:

Hi Kati,

You break my heart. Are the doctors sure it’s your thyroid that’s caused you to lose your eyesight?

I know what you mean about not being able to communicate, that would be terrifying.

You’re probably going to get sick of me telling you this but have tests done for Hashimoto Encephalopathy. If anyone is a poster child for this disease, you’re it! It might turn out to be nothing but at least you tried. That’s how I feel, my appt is the 10th March and I will definately insist on these tests. I’m sure everything will be normal but I’ve got to try. I owe that to my daughters and myself.

The best thing about this disease is that it is treatable and has the same symptoms as cerebellar ataxia. The one thing that is mentioned again and again is that it impairs speaking.

Enough preaching, I hope you have a great day

19

HI
I was diagnosed with spin o cerebellar ataxia but just recentley told by consultant that there was nothing wrong with spine
so it is know cerebellar ataxia.

Lorna
Sara McArthur said:

Hi Lorna,


Thank you for responding to my post.



You’ve are another one affected so early in life. Can I ask you what CA stands for? Only thing I can think of is “Cerebellum Atrophy”. Am I right?



I was lucky in that I retired from the military just when this disease hit me. So to say I was already out of work, would be a correct statement. I went to school and got a four year degree in computers at the tender age of 49, I was older than most of the instructors! I’ve never worked in the tech world since my disease had gotten bad at that time.



I love swimming too and I agree with you, “I feel safe”. I draw and try to stay in touch with people through this website. I usually do this in the morning because that’s when I have the most energy. The rest of the day I’ll nap. I just don’t have the energy I use to.



Sara

20

Hi Sara,

Snap. I too have an app. on 10th March. Is yours up in London too ?
BoB