Mine started in my mid 40s and I’m now 68. As this condition has progressed, various symptoms have been exceptionally challenging and have had a big impact on my life. While I was still able to be moderately active, it was much easier to feel optimistic. Now, my exercise is confined to housework, and even that is becoming much harder to tackle. I have to bend because I can’t kneel, but we all know standing upright again brings on dizziness, so even the simplest tasks take ages, but someone has to clean… At the moment, I’m experiencing an Episodic attack, being mobile leaves me exhausted due to all the multitasking involved, so I sit still to get some relief. But sitting brings on stiffness and pain in my legs… xB
yes, I’m same, diagnosed late 50;s with CA and now 76 years old. I join a 2-hour tai chi class twice a week and do the set sitting down and the foundation exercises standing with walker in front of me. I also have personal trainer come to my home for an hour once a week to do resistance exercise and weight training.
I start to fall all the time but careful to have my walker to hand. I have just got a wider and more stable one, the Olympos. I have ELLIPTICAL CROSS TRAINER at home, a vibroplate and nintendo wii fit which I use one thing each day but not on tai chi and PT days. I can get up off the floor if I turn onto my knees and crawl to the bed and pull myself onto it. The tai chi class is good for the chat at break-time. Ataxia has taken over my life but my husband is supportive. I spend a lot of time [too much] on my laptop, reading FB timeline and news feeds but we do get out once a week at least to walk in park or visit country estates.
It has been a very slow progression so I just keep thinking of new ways to cope.
No you’re not lucky. But they are.
What is an episodic attack? I have attacks or fits but have been told they’re not related to ataxia. My eyes roll round involuntarily and I feel very dizzy (more dizzy than usual).
Is that an episodic attack?
That does not sound like an episodic attack from ataxia, but more like a seizure. Have you discussed your fits with your neurologist? I do not have ataxia episodic attacks, but I think they are times when ataxia symptoms are worse. Your symptoms are not classical ataxia symptoms.
Ok. That’s what someone else (in this forum) said. It’s just that people on this forum also say that Doctors including Neurologists don’t necessarily know much about Ataxia. So when my Neurologist gave me epilepsy pills, alarm bells started ringing. But I think I must accept it - as well as my ataxia. I had treatment as a child for a brain tumour and it gave me ataxia. But it also created other problems so I presume this is one of them. I don’t think I have episodic attacks then apart from little ones that don’t cause big problems. Thank you
You do realize that I was being sarcastic.
Chaz451, I guess I am a bit slow because I did not figure that out! I agree with you about exercise. I hate it, but it does make me feel better, so I do it.
Cross-eyes, not all neurologists understand ataxia, but they should understand epilepsy. I suspect yours was right. As a non-medical doctor, though, I would believe a medical professional over me. Forexample, my sister who is a cardiologist taught me how to read EKGs and I could see a lot, but missed a couple heart attacks (though we claimed they were probably just little ones). Of course, she read the actual ones and all identifying info was hidden so there were no ethical violations… I am just saying that I do not know lots of important stuff.
Some Ataxias are linked to Epilepsy, what you’ve described doesn’t stack up as being part of ‘general ataxia symptoms’, did your Neurologist explain why Epilepsy medication was prescribed Although of course this medication can be used to alleviate other symptoms.
You asked ‘what is an Episodic attack’. As most of us know not everyone experiences symptoms in exactly the same way, and as far as I know there are only generalisations when it comes to descriptions of symptoms anyway, so what I describe is just how an Episodic attack effects me…
24/7 I have the usual symptoms most of us experience, increasingly worsening balance and a sense of being drunk without the euphoria For me, an ‘attack’ means I’m aware of deep fatigue and often fall fast asleep for a couple of hours. Prior to this my temperature drops and I feel very chilled. Multitasking and concentration are severely affected. Tongue biting and choking occur when I have food or drink, even saliva can go down the wrong way. Balance is much worse, and staying safe takes much more effort. Speech is slurred and slow. Any social interaction is out of the question. This can last from a few days, to a couple of weeks, before things return to my ‘new normal’. But I’m coming to recognise that my condition is generally deteriorating after each ‘attack’.
Initially, when I first started having unusual symptoms (deja vu, and I actually did have one seizure in my sleep) I was diagnosed with Temporal Lobe Epilepsy. But eventually an MRI confirmed Cerebellar Atrophy, and a different Neurologist (actually a Professor who specialises in Ataxia) confirmed it wasn’t Epilepsy but Ataxia. So, it seems I have an Recessive Episodic Type, but not one that’s currently documented.
Can you ask to be referred to an Ataxia Centre Or, are you currently being seen at Sheffield Ataxia Centre xB
I don’t go to Sheffield. I mentioned it once to my GP so she could and would refer me if I really wanted, but I don’t think it would achieve much. My own ataxia symptoms are just the drunken walk and talk and associated problems like toileting. Pretty mild compared to yours and others. I’m slowly degenerating and might be in a wheel chair at some point.
So I was assuming these fits were associated with ataxia and had been diagnosed wrongly as epileptic.
I’m reasonably satisfied now that I do have epilepsy - or similar, as well as ataxia.
After all the brain tumour and its treatment covered more than just the cerebellum so it seems reasonable now that I do have epilepsy or similar as well as ataxia.
My biggest concern now is the prospect of a wheelchair. It would change my life completely. You’ve talked about needing to go to the toilet. Well how do we do that if we’re stuck in a wheelchair?
In reply to your statement “You do realize that I was being sarcastic”
Yes I did realize but our non-ataxian friends are still lucky themselves. I read the other day that out of about 200 bones in our body, 50 are in our feet (25 each I suppose) plus an unknown number of muscles and nerves. All these muscle and bone movements need to be coordinated to within split seconds by the nerves that go through our spine and cerebellum so frankly it’s a miracle that anybody can walk. So yeah, our non-ataxian friends are very lucky.
Given the fact that you had treatment for a brain tumour, it’s possible that your ataxia is ‘Acquired’ and as you say, Epilepsy could be a separate issue Once the Cerebellum is ‘affected’ all sorts of problems can occur, not only related to mobility. I’ve been ‘all around the houses and back’ trying to make sense of my symptoms. This hasn’t been helped by the fact that I had a severe knock to my forehead as a child, and several whiplash incidents over the years prior to ataxia symptoms starting. So, despite MRIs showing Cerebellar Atrophy, and blood tests having found a ‘less than 100%’ link with a mutant Recessive gene, my Neurologist still thought ‘something else’ was in the mix xB
VERY interesting Beryl! Because my Ataxia is Sporadic, you might have just opened my mind regarding my history. My Ataxia was there since 1968 and was pretty mild at that point and did not exacerbate. Then in 2013, I had a very bad accident on the golf course [I won’t go into the details now] and wound up banging my head because of it. After that, my Ataxia took a route that made my symptoms exacerbate quickly. I’ve always thought there was a connection and now your post opened my eyes again.
For the benefit of anybody who hasn’t heard of Sporadic Ataxia, ataxia.org/wp-content/uploads/2017/07/Sporadic.pdf xB
Whip-lash. Now that’s interesting for two reasons. First I’ve read somewhere that whip-lash can cause araxia. I suppose it’s the physical force on the cerebellum - if that’s what you had. Second, my brother has had severe whip-lash injury. Twenty years later he is still suffering but for him the whiplash force was on his neck and it caused a tiny fracture in his spine. His symptoms are not ataxia but there’s clear similarities.
Finally, to put a smile on your face, here’s a picture
My Father in Law once forced a pill into his hearing aid thinking it was a battery…
Re whiplash - my first MRI showed twisted blood vessels putting pressure on my Cerebellum. Tilting my head back or forward has caused me problems for years, I can’t help feeling whiplash has had a knock on effect…
Thanks for the laugh xB
Last night, I was in our utility room collecting washing and and my hot water bottle, it was late and I’d been drowsing on the sofa, so not at my most alert… My attention was suddenly riveted on a rustling noise, and movement Eventually I focused on a small field mouse, more agitated than I was.
My Husband is much faster on his feet, but he was unable to catch the intruder, we had no idea where it had come from, and it finally went to ground behind units. We have a cat, we shut the utility door firmly to avoid bloodshed.
This morning, before he went to work, my Husband gave me a Hamster Ball and other fiddly things to trap the mouse with ( my Daughter used to have Hamsters when she lived at home)… I was speechless, he knows what my balance and focus are like when I bend down, what was he thinking xB
Well there you are then. To my mind that explains everything. If you have pressure on your cerebellum, the thousands of nerves going through it will be squashed, There’ll be cross connections, nerves will blend. A good cerebellum that works properly is a miracle. So the slightest problem and it’ll go haywire. I’m no medical man so I just think of things in physical sort of way. I have pressure on my cerebellum I think: spino-cerebral fluid they called it so they gave me a shunt 40 years ago to syphon off any excess fluid. As far as I know, it’s still working. And yes, it’s all whiplash for you (I would guess so anyway)
My wife’s a bit like that. She sometimes refuses to believe I gave ataxia although my GP, neurologist and neuro-surgeon have all confirmed it. She tells me to walk straight and faster. Meanwhile our neighbour has a bad leg and she too walks even more slowly. My wife can believe her.
Mmm, I suspect a lot of people would would agree with you, our ‘nearest and dearest’ must get used to our challenges, get used to the way we operate, but often don’t want to accept the actual diagnosis. But it is hard when they show more empathy to virtual strangers. Often, I’ve wished my ‘nearest and dearest’ would actually read the facts available about Ataxia, and it’s symptoms. Although he’s been with me to see Specialist Neurologists and listened to their diagnosis, he’s never shown any interest in wanting to know as much as he could about why we Ataxians are the way we are.
Seeing someone struggle with balance, have mobility problems and often also vision impairment, is just the tip of the iceberg when it comes to Ataxia. No-one suspects the hidden aspects, how much we struggle with concentration, multitasking and social occasions. Never mind the seemingly myriad of other petty symptoms that become our new norm. I try to bite my tongue () and not go on about Ataxia too much at home, especially to my adult children, who just glaze over anyway.
Just last week I visited my Uncle, he’s a resident in a Care Home because he has Dementia. I had to pass some agitated Residents to get to the Day Room, and actually felt vulnerable That’s one of the things I struggle with the most, feeling vulnerable… I may look in control and able to deal with anything, but looks can be deceptive.
Have you considered contacting your local Ataxia Support Group there’s a list on www.ataxia.org.uk I know from my own experience that it can be a great way of ‘letting it rip’ with like-minded people xB