Positive progession!

General
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Hello all,

Though I am known on some forums for my 'walls of text', I will try to keep this as short as possible!

I would like to talk about progression regarding my diagnosis and invite you all to share your experience of progression on your own 'cases'. Obviously, there is no pressure or requirement for anyone to actually share progress experiences but I do hope that in sharing, we may be able to help others - especially those new to ataxia and LWA.

Some of you will know that I have been having my 'condition' assessed for around four years now. I have had many MRI scans, bloods tested for genetic / heredity reasons and sessions with my GP, physiotherapists and neurologists. I found out about my ataxia by accident when a doctor wrote 'ataxia' on a medical certificate I was submitting to the 'authorities' regarding my health. In general, my ataxia is getting worse and I have been told (neurologist) that my ataxia will not get better - it is progressive and degenerative.

Over the last four years, I have progressed from having a medical problem (or group of problems) that where initially unexplained to now knowing I have (a form of) ataxia, I have been assessed for and had discounted multiple sclerosis (MS) and I have been told that my ataxia is not hereditary or genetically passed on - even though it seems I have the same condition as my father (he was just recently told he has a form of ataxia) and my grandfather had very similar problems as my father and me!

Further to all this, I have found out a lot about ataxia(s) from online sources. Mainly this site (LWA) and Ataxia UK have helped with good information, genuinely helpful articles and questions and answers and a good social 'vibe'. I have no specific links regarding medical opinions or research regarding ataxia but have read lots online about such. I would say though that any looking online for answers to be careful about what is read / seen online as there are some misleading articles out there!

Most recently, I have had some news that has a possible bearing on my condition and although it can be seen as negative, I am taking it as a possible positive! My father went for a neurology session and was told that the neurology team has looked at my records in comparison with his and other family records we provided and other family members medical records that were made available (with permissions such as I granted for sharing my records). Now, I cannot draw any facts relating directly to me from this, but dad has been told that his condition is suspected (almost definite) 'cerebella ataxia' and he should say this is the condition he has. Further to that my father was told that my grandfather likely had the same condition - though there were no means to diagnose this in his lifetime. Also, I have to mention these findings to my neurologist when I see him in January. My neurologist is part of the same team helping my father and I used to see the neurologist my father sees now. Bad news? Good news? Progress at least and that is good.

So! I have got some progress in knowing about my condition from various sources. The thing is, it has been a long journey so far. It can seem frustrating when diagnosis or information seem to be far off or when it seems that getting information about or making progress with ataxia seems to be drawn out or hitting 'dead ends'. It can take a long time to get any solid advice or help or make progress regarding ataxia - whether you have ataxia or are related to or care for someone with ataxia. I think it is always important to remember though that help is available and progress can be made.

I hope that by sharing our experiences about progress that we can show that, as much as it can sometimes seem that the future for people with ataxia (ataxians?) is bleak, there is help and advice 'out there' and positive progress to be made. Yes there are times of negativity but we should not lose hope or sight of the positive.

Thank you for reading this. I hope you can all find positive progression.

Michael.

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Dear Michael,

I thank you and share your thoughts.

I was diagnosed with cerebellar ataxia in Sept 2008. It is termed idiopathic and is not hereditary.

It is progressive…used a cane , then a frame and now a wheelchair"
I am being assessed as I do not seem to empty my bladder.

The loss of independence and vulnerability are difficult to deal with.
The condition is limiting and hard.
Joseph.

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Yes I can relate to most of this. I havent actually focussed much on my progression for about a year now.

Tests and travelling to appointments can be so stressful, I find it best to just get on with life.

I just wanted to be sure that there wasnt any underlying condition for which there is a treatment.

I understand that, as we get older, our bodies find it more difficult to cope with ataxic movements. Muscles and joints will suffer.

Frequent regular exercise and healthy diet will keep the mind and body at optimum health and that is the most we can do.

I realise that some ataxias are aggressive and my opinions will count for nothing .. for you I send hugs xx

PATSY/CA/70/UK

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As doctors dont know to much about Ataxia. My doctor has to say it is hereditary. My father had it. His father had it. His 2 uncles had it. a sister, and my cousin. And now me. It hit us all around the age of 45. No one has died from it. It was all other reasons. Now my aunt who has it is 85. In a wheel chair. But now has heart problems. Thats what they all died from. We are from an Italian family. I am 52 and I stumble when I walk. My speech is getting worse. I cant write anymore. jump, run. dance, bowl, skip, whip an egg, put makeup on. Nothing. I deal with not being able to do things everyday. My kids don't even ask me to babysit my grand kids, on less there is no other way. Sorry I'm not positive about this disability. But I haven't found one yet!

Lori

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Hi All ,
I am frustrated a lot by the condítion as the goalpost moves as you think you are close.
Joseph

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I have made progress after believing I would get to the stage I'd be unable to manage myself fairly quickly.

An intensive exercise regime has helped and the Forced Exercise theory. I was going for next dog trained by charity but I decided I could manage it myself so got myself a puppy which is my newest challenge.

In some ways the Ataxia is worse as I struggle with car travel due to motion sickness been more severe and I've noticed issues with depth perception which I thought was only bad in dark. Recently I made it down to the Asda for last few items of xmas shopping and found it visually overwhelming in there. It doesn' t help that everytime I do get there they seem to have moved everything around!

I was glad to get out and luckily don't have to go on my usual xmas shopping trip for the day to bigger shopping centre as I can't leave the new pup for that long. (usually away 5-6 hours). I find it's more difficult moving in busy places especially when people between you and the walls constantly moving to make it difficult for me to judge how far I am off things.

I'm finding I'm only going out with Inca at quietest times so memory plays a big part and luckily it's a quiet village, but socialising is getting very difficult especially with communication difficulties on top.. sitting in a pub in dimmed light all night with a group of people who you got no idea what they're saying, is no fun!

But for now I'm still independent in my own home and village! I'm aiming for another 10yrs after JJ (puppy) is trained up!

Kati

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Great post Michael. Very informative. thanks for taking the time.

I posted on Ben's Friends Blog so more people can find it: http://blog.bensfriends.org/post/36364079910/positive-progession-living-with-ataxia-online

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My issues are related to a stroke 5 years ago that left me with muscle weakness, and balance issues. I do a lot of therapy and exercise and I am doing a little bit better all the time so my progression is very slow but it is going toward improvement. I am also doing better as I learn to set my priorities for activities and pace myself. I now have several close friends with ataxia probems and do my best to be supportive and or helpful.

Kati… we just got a puppy too. My daughter is planning to show him and do agility trials with him so I think he might eventually be helpful to have around for me too. Right now he is my biggest tripping hazard! House breaking him is turning into my current form of exercise and excitement.

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Please read this from Dr. Tom Clouse’s site: He’s a Dr. that developed ataxia himself, so he understands us medically and physicaly because he has to live with ataxia also. He says that it doesn’t matter what type that we have, we all have things in comon:
HE ENEMY WITHIN OURSELVES
http://walkingwithataxia.com/YOUR%20ENEMY.htm

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Hello all,

WOW! This really took off! :)

I can relate to much of what has been posted in the replies.

As well as the news about my father, my GP recently confirmed that I have Fibromyalgia. Basically, that confirmation was good news - although it may seem not! I now at least have a confirmation regards the terrible muscle pains I get. Turning negatives into positives is not always easy but it can be done. :)

As for going shopping - particularly at this time of year when the shops are packed, locally I use my mobility scooter and this has its issues but I find most people to be helpful or sympathetic (in the good sense). I used to travel to shopping centres within a forty or so mile radius of home and had to walk while shopping and needed two sticks to help. The negative of such shopping trips is that it is very difficult to walk with two sticks and shopping in a crowded shopping centre. After a very recent trip to a nearby town I said I would not go shopping again if I had to walk - as I was in so much pain and could hardly walk a few metres without having to stop. All of that is very negative. On the positive side, I have joined a 'shop mobility' scheme and can now hire mobility scooters or wheelchairs in the very large shopping centre in Gateshead - the 'Metro Centre' and this has been great for shopping through this year and particularly for my christmas shopping.

I could go on but I think that what I am try to say is that we are all aware how dificult, frustrating and demoralizing ataxia can be - there are positives to be found though. As I progress with my condition, I know there will be difficult times and times I will feel negative. I just know though that there will be positives too.

I would ask anyone reading this, whether new to ataxia or well aquainted with it to hold on to the positives as they progress and not let the negatives get to them too much. This site (LWA) has been a real help to me and I hope it will be just as helpful to others as they (inevitably) progress.

I will need to sign off now - it's time to eat. :)

@Scott; Thanks for linking this and feel free to link anything else I post if it is relevant.

@ Jeannie; I'll follow that link you posted later today. Thank you.

@All; Thanks for the replies. :)

Once again; thank you for reading this. I hope you can all find positive progression.

?EDITED for daft mistakes and omissions!

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Just a quick reply; I have read the article linked by Jeannie and think it is wonderful for its good and bad parts and inspirational message. I have bookmarked the article so I can, later, read more of the site it is on.

Thanks again Jeannie for the link and all of you for your replies.

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Your so welcome! I just had the oppertunity to work with him just resently myself and I have to tell ya, talk about Wow! He goes around and helps people one on one (accessing everyone) with ataxia just for a donation and the goodness of his heart. I'm so thankful that I came across his site. You can also email him through his site, there is a link on his page.

He worked with a few people at our Walk and Roll for ataxia, here in Ca a few weeks ago! I saw him help people do much more than they ever thought they could do with their limitation in having ataxia. And personally I can tell you that he has helpped me so much. It's invaluable information to get tailored to just you!

Everytime I go on his site I see somethings on their that are new.

When we all worked with him he told us that he's working on putting out a book, and he hopes to be done with it by the end of this year. I can't wait for more of this information to come out.

I find his information works when I truly work at it! Glad you like the site. Enjoy looking at more tabs. Oh yeah, at the left upper corner click on the guy that is falling down. It will open up a video of his working with someone. It gives a true idea of him and what he does! :0)

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Hi Michael, Wonderful post! I agree, keeping positive is so important with ataxia, as attitude is the only thing we have control over. I was diagnosed with sporadic cerebellar ataxia about 8 years ago (non-hereditary/unknown cause. I recently had genetic testing for the known recessive types of ataxia (per my neurologist) and my tests were negative. My ataxia is progressing slowly, so I'm thankful for that. I find exercise for strength and balance helps, as well as trying to eat healthy. I use a cane to prevent falls now, although I took a bad fall last evening in my kitchen. Not my idea of a good time...,ha! Oh well, I haven't fallen lately, so maybe I was due. And I didn't break anything so that's a plus. ;o)

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Hi Michael, Great post! I agree, it's better to be positive about ataxia, as attitude is the only thing we have control over! I was diagnosed about 8 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). I recently had genetic testing for the known recessive types of ataxia (per my neurologist), which was negative. This made me happy, as I have grown children and grandchildren. So although I don't know why I have ataxia, this was "positive" news for me! Unlike you, no one in my family has ataxia except me. I'm kind of confused though, as you said your dad and grandpa had ataxia. You had genetic testing and your ataxia isn't hereditary? My ataxia is slowly progressing, although I exercise for strength and balance and try to eat as healthy as I can. I refuse to let ataxia get the better of me...,ha! In other words, I'm not going to let ataxia define who I am! So that's my "positive progression" outlook! Does that make sense? I live by the words, "I may have ataxia, but ataxia doesn't have me"!!! ;o)

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I was thinking today. 30, 40, 50 years ago when my father and grandfather and uncles went to the doctor because of there Ataxia.The doctors didn't know what they had. When my aunt first got it. The doctors didn't know what she had. Then after time they said women cant get it. I remember my mom getting books tiring to find out what my dads side of the family was getting. Sorry I can not remember years.When all this was going on but I'm told that's just old age. lol. So I would say if other family members have it or had it. Its hereditary. Thats just my opinion.

Lori

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Years ago they called it cerebellar disorder.

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Hello all,

First - aarrgghh!! I just got forced to remember to write my posts in 'word' or some such similar app! I was editing a line in the original of this post, pressed delete and got sent back a page and lost the work!

Any way;

Yes! Rose! That made perfect sense!

And Lori - I had not, to memory, seen or heard the term 'cerebelar disorder' used before and will try to remember it.

The thing about ataxia 'running' in a family but not being hereditary puzzles me too! I vaguely remember a doctor telling me that 'hereditary' is seen differently in the medical world than in the day to day (sorry I cannot remember the exact explanation).

To be truthful, I was aware that the term 'positive progression' would likely have varying meanings to different people! I am glad though that the 'central' idea of how I tend to see 'positive progression' has been grasped in this thread and added to in the discussion. It is good for me to see that I put forward my point(s) in a way that has been well received.

Thanks again everyone. Stay positive. :)

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hI mICHAEL

Nobody has heard of cerebellar disorder. Thats what they told my family in the 60's. When I went to my doctor in 2005 and said I had cerebellar disorder, She giggled. And did some test. And said it is called Ataxia. All that had it had passed away by this time. From other causes. Except my Aunt and cousin. So I didnt mean anything bad by what I said. Because with Ataxia there are no answers.

Lori

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Yeah! I did'nt take anything bad from what you wrote. :)

Sorry if I made it look like I did take something bad as that was not the intention.

My neurologists sometimes giggle with me too by the way - it actually helps our sessions go along nicely.

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Trying to send e mail to Bernard Purcell. Joseph.
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