Hi, my name is Jakob. It has taken me a bit to actually decide to post anything.
I am an 18-year-old living with “Ataxia”. I put that in quotes because rather than inheriting ataxia, mine comes from a fibrillary Astrocytoma (Brain Tumor) that I had from when I was two until I was five. The ataxia most likely comes from my second surgery but I can’t be completely certain. The tumor was more on one side of the brain than the other, so as a result I usually only have an ataxic right side. However, my left side sometimes joins in. I also have many issues with coordination and balance (again more concentrated on one side).
I am not sure whether or not mine gets worse or not overtime yet. I have been able to improve it drastically over the years with self-therapy. But at the time being it has either plateaued or increased in severity.
If anyone has questions I would love to answer them or if anyone here is in the same boat let me know!
-Jakob
Welcome here, Jakob! Great to see you posting. What a story you have, thank you for sharing it with us.
In your profile, you mention that your sports activity helps with your ataxia. I’m not an ataxia patient myself (I have another rare condition, and I’m a volunteer admin here) so can you explain how that works for those of us like me who are clueless?
So the way that I have improved my ataxia is through outdoor activities. My parents are avid cross country skiers so I started skiing at a young age. Now I compete at a national level. I also mountain bike, hike, run, essentially anything outdoors.
There are 2 things I’ve noticed with sports.
One, it takes an obscene amount of failures to be able to complete just one type of thing well. I have been skiing and running for 13 years now and I still fall a lot. I’ve noticed that for me, repetitive motion is the secret to doing anything. If I want to be able to snap my fingers I must perform that motion thousands of times and then I can do it like a normal person who is really bad at that action. The same goes towards anything else.
Two, I have noticed that my ataxia improves when I exercise. I am not sure why but it seems that I have a bit more control after I do stuff. If I don’t exercise for a couple days my right-hand gets awful to deal with.
I have also noticed that the outdoors are very soothing for me and make me forget how much I would just like to cut off my right-hand and not deal with it.
Wow. Just WOW, Jakob! What an amazing set of observations, and what determination and drive you have.
Exercise is good for so many things, isn’t it? I have a delightful condition called Psoriatic Arthritis. It’s a pretty high maintenance disease, but of all the things that I do to look after myself, exercise is the thing that makes the most consistent difference to me, especially for pain control. One of my disease-buddies always says “motion is lotion” and he’s right.
Yes, exercise is the key. I unfortunately can’t do any sports as my balance and coordination is so bad. So the only way I stay fit is to go to the gym as much as I can. I focus on strength training and core strength. I used to do martial arts before but now I can’t Do you have any suggestions on any soft sports that I can look into? Recently, I’ve been looking into Tai-Chi and Pilates.
It depends upon how much you can invest. I would turn you towards a recumbant bike. In the winter if you live by any nordic skiing I would try to get into sit skiing. Although sitting down isn’t going to do much for your legs, these thing will get you outside. Which I think is extremely important.
I am like you in that my ataxia is acquired from surgery for a brain tumor that affected my cerebellum and brain stem. Mine was a pilocytic astrocytoma (type 1 brain cancer) that was pretty central, but affected my left side more. Another difference is that I am a lot older than you-67.
I experience lots of balance problems, my left hand is shaky, I have vision problems, and I drop everything in sight. I have found that my ataxia is not getting worse, which is good. I have tried all sorts of things to get better, but only see very small improvements.
As other wise people on this site told me, if you have ataxia, you are one of us no matter how you got it. That was not a direct quote, but what I took from the note. Welcome!
Welcome Jakob! I’m sure you will find this platform/forum a useful tool (If you haven’t already). You may find folks just come here to vent, and that’s ok too (sometimes we just need to get it out). Others have great advice or 2 cents worth! Either way, it appears that you have contributed so much already. Thank you.
Hey Jakob,
I haven’t been diagnosed with ataxia, but have some of the traits, also due to an astrocytoma. I believe I’ve had this thing in my head since I was a child but it wasn’t diagnosed until I was in my 20’s. I was also involved in an MVA as a kid and 60% of symptoms were labelled as being caused by the accident. 40% was just been put down to me being a shit of a kid. At times that 60:40 was more 40:60. But either way I must admit I was an awful child, if there was trouble there was a VERY high possibility I was involved. I had numerous dr and hospital visits with a ‘Nothing wrong, all in his head’ diagnosis.
So fast forward a decade and a bit and I’m driving down the road and the lights went out. I couldn’t see. I pulled over, called my girlfriend and off to see another dr. Had a scan, dr comes out with 'Ohh look what we found…". I was so angry, all those years of ‘nothing wrong’ and then they found it. I do laugh (sarcastically) to myself, “so spose they were right in a way, it was ‘…all in his head…’”. Over all of those years there were signs but nobody connected all of the dots. And I spose (Now I can say lol) I did live up to that title of being ‘a shit of a kid’ which only reinforced the opinion.
I did have some coordination issues as a child but I seemed to compensate ‘fairly’ well. But post surgery those issues seemed magnified. I eventually compensated a bit more and got away with them too. But with each operation I seemed to get a bit worse and a bit worse. A bit like yourself I’m not sure which surgery made it ‘bad’ but I’ve had 6 surgeries so far and each has knocked me a bit more.
Some people have some fairly bad ataxia symptoms and in comparison mine a minimal (Well, I think they are. My wife thinks they are bad). It’s my balance that’s my biggest issue now. After my last operations in '13 my balance, my gait and my coordination was awful, but it has improved with light exercise and lots of walking.
The headaches, now they haven’t improved and are my BIGGEST issue. I do still have ‘ataxia’ type symptoms which I try to ignore or I’ve again learnt to compensate for, but sometimes I’ll stand go to turn right only to find the floor DOH. I try to laugh it off, blaming the damn floor for moving on me, but it is annoying.
Believe me when I say “You are among friends here. We know 'cos we live it too.”
I have been expiramenting with many things as well. For instance I have noticed a lot of fluctuation is based a function of my sleep level, stress level as well as it’s natural cycle. Is there anything else that you’ve noticed that you recommend giving a try?
Its wonderful to find other people that have gotten it the same way! My biggest issue which I assume is the same with the hereditary types is that its such a case by case basis that many doctors and therapists have no idea where to start with me. So its turned into me, myself, and I testing different hypothesis to see what works.
I only had to have two surguries. After I had 3 rounds of chemo and, finally, radiation.
I have also experienced many headaches from the tumor. After my second surgury I had a shunt put in. After many visits with nuerologists and nuerosurgeons it was discovered that it was my shunt over draining the CSF and therefore giving me a headache.As a result, laying down would bring the CSF back to an equilibrium.
Same, same. I too have a shunt, well, actually 2. One of them the tubing broke, so they put in another, leaving the broken tubing in place within the brain. After they placed the 2nd they found the valve was faulty, causing over drainage and slit ventricle syndrome. They had to operate again and replace the valve with a magnetically adjustable version. But now that the present one has been added I can no longer have MRI’s. I’ve had a lot of ‘fun and games’ getting the settings set correctly with one neuro telling me “Just don’t laydown for too long”
Brains are such individual pieces of equipment, no two are exactly the same and due to this I have found that each neuro has their own views and own opinions. I get some wicked headaches and some real strange sensations. I’ve been told by one “Well, that shouldn’t be happening…” and I agree, it shouldn’t, but the theory is far different from the reality.
A bit like you I have tried to learn to self manage. I say ‘tried’ because for me things fluctuate so badly. I’m often saying 'Some days I can jump over the moon, other days I hibernate in bed in a darkened room. I can never tell what the day will bring". For me it’s all about management. Management of exercise, management of meds, management of rest, management of noise, management of light (bright light and noise can trigger an awful head and some weird symptoms) and although the neuro’s can make out they know all about it, they don’t. They may know all the theory but the reality is far different. Heck, I had one neuro tell me they actually found a brain in there, but some days I even question that lol.
And I’ll say it again,
"Believe me when I say “You are among friends here.
We know 'cos we live it too.”
Hey buddy. I have “acquired” ataxia - resulting from surgery (only one - but a LONG one) to remove a tumor from the same area as Lynda! I also have right side weakness and distal neuropathy of my (dominant) right arm (not so much shakes but lack of feeling/sense of touch). Not ready to cut it off… it makes for a great “organic prosthetic”, lol. I’m with you on the love of the outdoors and I find some peace there but my proprioception is completely impaired so my sense of balance is quite challenged, so my skiing days are behind me and I tend to rely on motorized enhanced vehicles to get out and about I can hike a bit, but am no longer a strong hiker; can ride a bike if I have to, but peddaling it isn’t fun so I got an electric bike, (and a Jeep) LOL. I have a shunt as I also had issues w CSF. I’ve tried tons of stuff myself and agree with your observations and attitudes about diagnoses and self-initiated “therapy”. I have found this site (and another) useful in getting info on ataxia and making some connections eventhough most of the ataxians you will meet will be “genetic” and their conditions regrettably progressive - whereas I kinda started at the bottom and got progressively better - like you, my progress/improvement/healing has eventually slowed or plateaud… I continue to seek ways to get stronger and improve my quality of physical life. It’s nice to see a few other “acquired ataxians” with similar experiences chiming in on your post. Brain injuries all seem to result in unique results and impairments, in my observation… no two of us exactly alike, but interesting for me, after all these years (about 8 post op and I’m 48) to find a few people with similar issues. I’ve been accused by my therapists as being an “excellent compensaror” and have picked up a fes tricks and made a few observations over the years, but am still learning and trying new things and would be happy to conpare notes with you guys. Thanks for your post!
Sleep is so important to so many things, imo. Lucky me, my damaged cerebellum has blessed me with both chronic fatigue AND insomnia (a really crappy combination). I’ve done tons of experimenting there but believe sleep issues (and soutions) are very unique and individual specific, though I’m happy to share a few things that have worked ror me if anyone else is in the same boat (messed up circadian rhythyms).
Linda, my surgery was in the same area (cerebellum and brain stem) and I have a residual vision issue… a cut in the upper third of my field of vision; but probably the best place to lose your vision if you think about it, since stuff isn’t typically coming at you from above. You mentioned progress has slowed… How long ago was your surgery? My experience and advice I got was that neuro gains/healing is slow and tends to taper off at about three years out…
My surgery was almost 9 years ago, so I have long ago passed the point where natural healing will occur. I hate to exercise, but have walked about a mile daily, ride my exercise bike, and do exercises I was advised to do by my PT. My balance precludes more activity and much walking by myself. I am also fortunate that I also only had one long surgery and no headaches. I actually feel pretty good though I can not do much. My speaking, writing and typing limitations make me basically a CPU with limited I/O capability, if you pardon the computer analogy.
I am naturally left handed. Because my left hand is shaky-the medical term is intention tremor-my OT suggested I should become right handed. Despite lots of practice,now I can not write with either hand.
I also have had insomnia, though I now sleep 7-8 hours each night, which is fine. I’ve never treated it. The only thing I did was to wait a long time.
Hey, Thank you so much for the response! I too had a shunt for many years. I started to get issues with it shunting too much CSF and suffered through YEARS of insane headaches. For a few years I had headaches everyday, I ended up decided to try and remove the shunt. It was a ~5 week experience in the hospital, which was also the most pain I have experienced. But now I am shunt free and do not have headaches from it. I had to lay down to balance out the headaches rather than to stand up.
Wow! Your experience is eerily similair to mine! I also experienced some insane headaches. I had my shunt in up until 2016ish when I got it removed. For years before that I was getting headaches every single day. At first we (and doctors) beleived they were migraines. When I got the headache it would be intensified by bright light, espeicially those tube lights in large buildings. After a while we decided to try and test if I could go with out the shunt. This initiated a 5 week hospital stay. It was the worst pain of my life, but I my brain was able to adapt and can now absorb the CSF on its own. I know no longer get headaches. I used to get headaches when I cried due to the shunt (did you?), I know get very light placebo headaches if I cry. It also had the welcome consequence of helping improve my balance and coordination! If you are still suffering I would suggest considering this! I would be happy to talk to you about it more in detail!
I’m chiming in here because once upon a time I knew some young people with Friedeich’s Ataxia and I want to caution you due to your age.
A difference between young ataxians and middle to old ones is that the young people are used to being disabled. They know how they move and look to other people and have accepted it. People who discovered the ataxia later in life have a sense of themselves without it, and therefore are not comfortable as disabled people.
This self consciousness that us older people feel can be tremendously useful. We push ourselves to appear normal, and this can help us retrain ourselves to function better.
While you are young and otherwise healthy, NOW is the time to push. Look critically at yourself and find something to master. Like clear speech or walking better. You will see results if you keep at it.
And like I just told a 70 year old on here-never let people feel sorry for you. Set future goals and focus your energy at accomplishing them. Make sure that you feel lucky to be you and no one else.
Do you have any suggestions on any soft sports that I can look into? Recently, I’ve been looking into Tai-Chi and Pilates.