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Ataxia Support

I'm Manja with non genetic CA, cause undetermined

Hallo! I am Manja a 66 year old woman from The Netherlands. I think it was over 15 years ago I began to have problems with riding a bike. I also had this Donald Duck way of walking. I fell once a month. I was referred to a neurologist and after an MRI scan I was diagnosed with cerebellar atrophy in the vermis region. I had a “shrunken little brain”! As my mother used to have the same, a genetic survey was started, to no avail. The conclusion was: “of unknown origin” As I used to drink wine regularly, it was assumed that alcohol was the cause. However, it was not like I was a drunk. I had (and still have) a responsible job and lead an active life. The symptoms got gradually worse, but at the same time I learned to accept my limitations and to cope. My first trick was to replace my little rucksack with an airplane hand luggage trolley. As I was dragging this behind me it gave me more stability, like an anchor. That worked wonders. I travel a lot and love walking. The falling was reduced. In the meantime, i became more unhandy, dropping things more often and bumping into things most of the time. My speech & writing have deteriorated and I regularly have swallowing problems. No more fine movements. Still, when I read all your stories on here, I’m not so bad off! I wobble my way through life and am still very active. However, last week I had a shock in my self-confidence. I was walking (without my trolley) when I turned around and suddenly lost my balance and fell, just when about to cross a street at a traffic light. I had my hands in my pockets and couldn’t stop my head smashing on the edge of the curb. I look like I was severely beaten up! This has made me realise I have to do something. But what? Get a walking trike? Protective head gear? Find the real cause (I do not drink anymore)? Vitamin deficiency and go on a diet? Gluten allergy? Do exercises or physiotherapy? At the moment I’m mainly insecure, but I do not want this to slow me down. I can’t give in and stop living! I have to find something in between carefulness and over-protection. Any ideas are more than welcome!

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I’m so sorry. I’ve fallen too and it is awful. Are you seeing a neurologist at a movement disorders center
?

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Thank you so much, Linda. I’m no longer with a neurologist, as they feel there is nothing else they can do. I was diagnosed and labeled in 2013. However, I have been to my GP today and she has recommended physiotherapy, occupational therapy and a logopedist. Also I will get blood tests for gluten allergy and vitamin deficiencies. You never know, they may find another cause…

Manja,
Yes, the tough times wear us down…hang in there to discover your “new normals”…there’s many who will give you a lift that write on this site. Losing my fine motor skills brought me back to how kids learn to write…improvement is always encouraging…even little ones. jd

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Hi Manja, I’m a wheelchair-bound disabled Veteran, thanks to the toxins in Agent Orange herbicide. Most important, do-able excercise, chlorella and antioxidants. Keep your mind free and always be ‘here and now’; don’t let your mind wander.

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Hi Manja, I have SCA unknown number. Walking is bad, but I recently ‘gave up’ and started using a walking stick - it helps a lot and shows people that I have a problem so they know to allow me more time, etc. Need to get the stick measured to the right size though, if it’s not you can end up trying to run a three legged race with yourself which is dangerous and worse than useless! Take care, hope you work something out

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Thank you, JD! I’m sure happy with the support of my "New Normals! I do not mean to moan. However, there’s a lot I could learn from you all!

Exbirdman, that is a spot on advice! “Always be in the here and now and don’t let my mind wander!” How did you know I’m always five steps ahead of myself??? When crossing the street I was already asking myself which way to take on the other side of the road. That’s why I missed the red light and had to step back too suddenly when I saw the cars coming. You are so right! Stay in the here and now! Nothing wrong with that! I’ll also try the Chlorella and anti-oxidants. Thank you so much!

Mazy, that’s good to hear that a walking stick helps you. Somehow I think it would still make me feel insecure. You can still fall, can’t you? I was more thinking of a walking trike when the time comes. Did you see the Alinker??? It looks very flashy, not at all for a disabled person. And you can’t fall I would think… Downside is, it’s pretty expensive!

Manja - just looked at the Alinker, and the price is very high! Looks a good idea though… You can still fall with a stick, that’s true - have you spoken to a health professional about your worries? After a bad fall like yours, it is not surprising to feel as you do and sometimes they have more knowledge of what is available and what works best for your problems

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Manjadolan, I do hope ‘here and now’ helps. I speak only from my own
experience; I often catch myself starting to project my mind and I stop
and tell myself to ‘be here and now’. I found I felt much better after
taking antioxidants. I read on the Internet that Chlorella helps
non-genetic CA; it didn’t cure it but seems to have sharply slowed the
progressive. I wish I had started it sooner. I use a fermented chlorella;
has a softer cell wall and is absorbed more effectively.

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Your own experience is very helpful! I still have to accept my limitations. Thinking “concentrate on here and now” certainly feels much better than thinking “I have to take things slowly”. LOL. I’ve ordered the fermented Chlorella. I still have to look into the antioxidants. Any recommendations?

Manjadolan, Which antioxidants is largely dependent on how they let
you feel after taking them. Whole foods: green tea, blueberries,
strawberries or oranges (both Vita C); supplements: I use Mercola’s "Purple
Defense’ and ‘Astaxanthin’. A glass of Royal Matcha green tea is great in
the afternoon. How you feel is the story. :penguin:

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Dear Manja, I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) thirteen years ago, but I had very minor symptoms starting about eight years before my diagnosis. I started using a cane (stick) about six years ago to prevent falls. I find that sometimes I fall when not using it, so obviously it has been very helpful for me! I also exercise for strength and balance almost daily and find this helpful also! I hope some of this advice helps you too! My best to you…, ;o)

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Hi Manja😊I had quite good balance pulling onboard luggage too😉

It’s one thing wobbling around and still having good spatial awareness but I think the days of wandering around with hands in pockets needs a rethink😉

Even when using a walking stick for stability, I’ve fallen off kerbs, nothing is infallible😏 above all you need to be safe.
Some people find a walking stick is more of a hindrance and choose a rollator for stability. Yet, I do know someone who cannot even use a rollator.

The main thing is, keep safe and keep mobile :blush:xB

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Thank you, All!!! Your experience and advice is of great help to me. I’m certainly doing a huge “rethink”. I’m now exercising my muscle strength daily, eating far more healthy, taking vitamin supplements, concentrating on my moves etc. Still a lot of questions though… :wink:

If using a walking stick…perhaps a quad foot would help…better stability? jd

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That might be a good idea! I will check it out at the coming occupational therapy session. Thank you!

My pleasure! Best to you! jd

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