Anyone there who believes in neuroplasticity? Some people here -who mean good, I am sure- telling me braincells renew over and over again. You just have to train them to walk properly, like an infant who learns to walk actually, they say. So, just get my butt off that bench and…WALK. Anyone out there with a sane and sensible answer? I could do with one:) I have CA type idiopathic late-onset, first symptoms 2002, diagnosed in 2004. Was told by my neurologist that many years ago, that my small brain is shrinking, hence the loss of motorical skills as time goes by. Now this neuroplasticity thing drops out of nowhere and tells me the opposite. So I am just lazy, am I. Haaa, who will enlighten me?
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Neuro plasticity is for real. But it isn’t true that you can just decide to get out of your chair and walk moments after reading my comment. I’d be happy to share my story with you, if you’re interested. JD
Please do JD:) shoot, I am all ears!
Neuroplasticity is real but it is not a given. Those neuropathways develop very slowly less than a mm a month in some cases. The whole function of Physical therapy beyond strengthening is to develop new neuropathways. When you hear a PT say we need to start developing “new neuropathways” that is “code” for we are are going to do a repetive task over and over again BEYOND the point of boring and you need to spend a major portion of time at home everyday practicing over and over again and THEN you need to do it some more… Just when you think you have the PT figured out, in steps the OTs who have you repeat the task but now they have you doing it while doing something else (split thinking) In any event it is very nearly an all day everyday process.
There is a second component which was sort of mentioned in a previous post which has one working with a psychologist/psychiatrist developing additional neuropathways in the cognitive areas. this is equally critical. If you think back to pre ataxia days, you didn’t have to “think” about what you were doing, you just did it. When you have to think about it, your body does some strange things which usually result in a lot of stress (for lack of a better term) that makes chemical changes in the brain. Time and practice can improve it some and so can some medications.
In any event it is a rehab scenario that requires a a strong team from multiple disciplines and a huge commitment. There is several rehab facilities around the country that specialize in this are. MOST are VA hospitals but there are others such as the University of Maryland for the non-vets.
The bottom line is that it is a process that can be take advantage of but it doesn’t happen while watching TV. Which reminds me I’m off to the rehab center for a 5 hour appointment rehabing a month old stroke… I am going to catch hell because I didn’t do my homework yesterday (figured my cold was a good reason) My therapist will be able to tell instantly when I get there that I was “bad”
TJ
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Thanks TJ:) just what I figured, an all day and every day of lots of physical input. I did that for years and it drained me of all energy. Hardly leaving any left for the can do’s.
Have a good recovery on your stroke there! Thanks again:)
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My own experience with trying to walk is that there are some things that the Brain can’t do no matter what. I know that I did all the things my therapists suggested for a number of years and walking just did not happen.
It is popular with non-disabled people to believe that with a good attitude and hard work, every disability will be “overcome”. Believing that means they don’t need to fear a disability. It is also the “American dream”. But, those of us with disabilities know that isn’t necessarily true. It is pretty much blaming the victim–never a good idea. It is amazing to me how much blaming the victim happens, though.
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I think I am very active, although I use a walker, wheelchair and forearm crutches. I also cook some wash my floors on my hands and knees do the laundry and all the shopping so I can get exercise and I don’t see how I have ever improved in my walking, spasms or movements. Jerry
The problem is were it just “muscular” or just “nerves” you may have seen some improvement BUT ataxia is much more than that so there are some real limits to “neuroplasticity” but one thing does stay true as with any physical disability - what doesn’t move rusts or more nicley put Motion is lotion…
TJ
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Elle,
Happy to share! I’ve been busy all of today so I didn’t see your reply. I’m best in the morning so I’ll write a bit tomorrow a.m. JD
I guess thinking about it I didn’t retrain my mind I trained my body. I went to PT that specializes in neurology not orthopedic. Because of them I walk differently (shoulders back & look straight ahead), inclines/declines/snow (I make sure I’m fully on one foot before I go to the next), reaching across a table (I balance my body before I get something), stairs(I make sure I walk normally, not one step at a time), and I exercise (doesn’t matter what you do as long as you keep moving). I think swimming is the best because you can pretty much do anything without the fear of falling and you can use things that float if you need to. If you have Medicare you have Silversneakers and you can do multiple fitness things at no cost to you. Because of this I’m falling much less. To give you an idea - I fell about 2 weeks ago and before that I fell 3 days before Christmas. I was falling a few times per week.
Sorry but these people don’t know what they’re saying. When brain cells are dead they are dead and there is no bringing them back. You can possibly retrain a different area of your brain to do the work and that may be what they’re talking about.
I always tell my son when he doesn’t want to wear a helmet that you fix broken bones but if your brain breaks you can’t fix it,
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I see that the old adage of one negative thought needs to be replaced with seven positive thoughts is at work here…neuro plasticity is not dealing with dead areas of our brain, that’s for sure. There may be areas that have been injured though, and/or in my case, been put to sleep during anesthesia that didn’t wake back up without consistent ongoing work on my part, both mentally and physically. I highly recommend Switch On Your Brain program by Dr. Caroline Leaf. Our mind is Very, Very Strong. It’s our best ally when we face up and acknowledge its strength. Case in point…when overseas in 2013 I bunged up my left knee. When I saw the orthopedic doc a month later, he said I should be a lot farther along than I was…and as well, my PT said, “Well, Mrs. D. you might resign yourself to a limited range of motion.” I thought, “You whippersnapper, I’m going to show you.” And I gained my full range of motion back. But the back story was also realizing I HADN’T WANTED to improve, so I could use it as an excuse to not make another trip with my husband. That’s when I knew my mind was very strong. The moment I acknowledged my true intention and decided I wouldn’t use the accident as an excuse, but own up to my reservations on traveling, I began to improve. I write better offline so, I’ll jot some thoughts and post in a couple of days…JD
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Cerebellum is the least likely of all the lobes to regenerate. Therefore, for those of us with Cerebellum Ataxia, this does not apply.
And what is your resource for stating this? Frenkel saw many patients who were either bed or wheelchair bound recover to return to daily work…jd
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Am I right in thinking you have an ‘acquired ataxia’ said to be brought on after a general anaesthetic?
Often in the case of such ‘acquired ataxia’ repetitive exercise/therapy can result in symptoms being dramatically improved. Almost ‘mind over matter’. In such cases, most people wouldn’t quarrel with Neuroplasticity.
It’s a different set of circumstances when dealing with actual Cerebellar Atrophy. Most types are at best symtomatically managed. This is a specific condition, it’s progressive and degenerative, there’s no coming back. This doesn’t mean exercise isn’t beneficial, it’s advisable to retain muscle strength but it has to be within caperbility. Often, it doesn’t take much exertion to suffer a setback. The amount of energy used just to retain mental focus, never mind mobility, can be exhausting.
This is a useful FACT SHEET from the National Ataxia Foundation. www.ataxia.org/pdf/AtaxiaFAQ.pdf 
xB
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Hmm, I see. You are talking about atrophy of the cerebellum…thanks for your explanation…but until I see an MRI of my brain that shows atrophy I will continue on the therapy side, which I’m doing on my own using Frenkel’s text outlining his exercises. Also, perhaps we are in error to assume one way or another re: ataxia as Frenkel goes into details of the theories regarding ataxia…is it just cerebellar, is it psychological, is it sensibility…all interesting chapters in his book “The Treatment of Tabetic Ataxia by Means of Systematic Exercise An Exposition of the Principles and Practice of Compensatory Treatment”~~I suppose I stand in the “let’s-see-what-I-can-do” camp rather than pills or Botox, which is all my neurologist offered me to deal with my jerks. I’m definitely appreciating our dialogue! JD
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“The Neurogenesis Diet and Lifestyle” by Dr. Brant Cortright is a very good book on this subject.
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Thanks, Beryl. No, I have Cerebellar Atrophy from medication. I completely agree that exercise is beneficial-but you are so right that the amount of energy required for every day things is exhausting! Thanks for the link, I will look at it now.
I also have acquired ataxia from Brain surgery. In initial testing at the University of Wisconsin, the PoNS device has been shown to be useful for ataxia due to medication, MS and TBIs. It was also tested on and found to work for pediatric cancer patients at the University of Nebraska.It is in clinical trials for use for the TBIs. FDA approval is hoped for this year. Dr. Norman Diodge wrote about it. I am optimistic that it may help me.
According to my neurologist, neuroplasticity is for real. He told me there’s been experiments on rodents with brain/cerebellum damage, that make new neuropathways due to repetition. He told me to exercise for strength and balance at least an hour each day. The key to this is doing things over and over again and to keep challenging myself. For instance, I do a balance exercise where I stand at the ledge between my kitchen and family room (in case I start to fall I can grab on). I bend one knee backwards, holding it up for as many seconds as I can (without holding on to ledge). Then I do the other leg. A year ago I couldn’t even do 10 seconds, but now I can do 30 seconds! My best to you…,;o)
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In Frenkel’s text, referenced above, he encourages patients to exercise in shorter times, to not overtax our system…not longer than a total of a 45 minute session…better is 15 minutes, take a brief break, focusing on something unrelated to the exercise, and then another fifteen minutes. I’m finding this helpful for other activities…it helps for me to sit and do something different, then continue a task…it’s all about finding daily “new normals”…jd
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