Hi all!
This is going to be a long post but I think this is so important for anyone with ataxia. I think sharing the details will be important.
I have CSA2 hereditary. I was diagnosed about 10 years ago and have only had problems with my gait and then over the last few years I've had problems with my speech and dexterity (specifically my writing and typing). My speech is occasional but my typing as 65 wpm and now is 30 wpm. I have not had to use any canes, walkers or wheelchairs yet but I was falling about twice a week over 30 years. When my father was diagnosed I recognized his symptoms as my own and when I thought back I can remember back to high school of having problems. Just never realized that there was a medical problem.
As time went on everything stayed the same but then last September I fell and injured my knee. I didn’t break anything but I was in a wheelchair for about a week because I couldn’t bear any weight on it.
During that week my 14 year old had to help take care of me. I know he didn’t have a problem doing it but I did and I swore that I would do everything I could to not have to depend on him and stay out of canes,walkers, wheelchairs for as long as I could. This disease is so unpredictable.
I started investigating about what I could do to make me walk better and I found Dr. Clouse (some of you may be familiar with him). He comes to some areas and has people walking better. He also has a lot of information on his website to help.
He wasn’t able to come to my area so I thought about who are the experts in my area that can help me walk better. I talked to my family doctor (A neurologist is a waste of money after you’ve been diagnosed. My family doctor can do everything a neuro can and when he can’t he refers me to the right people). Anyway, I went for an eval for my speech, occupational and physical therapies. Each one said they could help.
I’m going to break down each one to tell you how they helped.
SPEECH - I started going and they taught me to slow down my speech when I was having problems and they also gave me exercises to do.
OCCUPATIONAL - I found out with them I was also having eye problems. I couldn’t cross my eyes and when I looked over to my peripheral vision my I eyes shook. We did exercises that worked on these things. They told me that this can cause me to walk worse. We also worked on my dexterity. I still can’t type fast but I was only printing before and now I’m writing cursive (slow but I can do it). They also have me working on gripping things between my fingers. I practice when I pick things up (i.e. taking the utensils out of the dishwasher, I do it one at a time and switch hands).
PHYSICAL - When I started I was falling about twice a week. When I walked they would have me walk different speeds and then looking side to side and up and down while walking. Also have me stop and turn around. When I walk I can look at the person next to me now. I had problems with aisles. I can now walk down an aisle without hanging on to the chairs. I was also having a problem walking zigzag through crowds. I can do that now. When I do fall we try to recreate the fall to find out why I fell. Wow, those have been eye openers!!!! I’ve learned that I need to use my core (neck to your butt). Shoulders back and down, lead with your hips, and make sure you swing your arms normally. I was also having problems getting off balance when I was just standing. Sounds weird but they told me to tighten my butt muscles when I was standing. IT WORKS! Not related to this, I was having trouble walking down stairs because my knees would give out. We discovered all these years I was walking down wrong. I’m now walking down a whole flight normally. They have taught me how to walk better, how to balance myself when I move and try to reach for things. I can stand still without holding on to anything and look at the sky. I have problems with stepping off a curb. I can do it but after 30 years of doing it wrong sometimes the mind takes over and you get scared. I keep practicing so I hope I can overcome this too. I have learned that for me this disease goes in cycles. They have a score for everything and it kept getting better and then after a few months my score got worse than when I was initially evaluated. A few weeks later it started improving again. This disease does whatever it wants. I learned that some of what I was doing was to protect myself from falling, was actually making things worse. Even when it looked like to others that I was doing everything correctly, they are not the experts and I would find that I needed to do certain things differently.
I have graduated from all 3 but I continue to do the exercises. When I look back, I don’t trip anymore, I get off balance but they have taught me how to correct that. The best news is that I haven’t fallen in about 4 months.
I would seriously think about utilizing these, especially the OT and PT. If you want your gait to be better I would recommend them both. Be evaluated for the OT also. They found the vision problem (my eye doctor did not) and if you use the PT make sure they specialize in neuro problems, not orthopedic. I found out the hard way there is a difference.
Personally, I think we need exercise but we need exercise that works on your areas of balance (your PT therapist can help with these) and I think we need to do any type of exercise that keeps us moving and works the overall body. I don’t think it has to be one thing (yoga, pilates, hiking, swimming, running, weights, biking).
There is no cure for ataxia, but I think PT, OT and speech therapy can help us be the most successful at walking that we can do. I don’t know if this will help anyone but I know right now that this has helped me. I don’t know if it will help me in the future or not but I have the tools to keep me walking on my own for as long as possible.
I just needed to pass this on. Maybe it will help somebody or give others hope.
I also found out the hard way the difference between ‘physiotherapists and neurophysiotherapists’