When we`re told "Use it or lose it", they`re really not joking. Last year, towards Christmas, I found I could walk less and less with the passage of time, `til just getting into the kitchen was about as much as I could manage, so I reasoned that as it felt like my legs were on the poiint of collapse, if I increased my leg strength, I could possibly maintain my mobility, and it worked. Balance has worsened recently, but now I have a Rollator, I regularly (most days) walk at least a mile, which I`m sure I couldn`t manage had I not embarked on a fairly intensive weight training programme for my upper legs. Everyone`s affected differently, just do what you can, but seriously "Use it, or lose it" Don`t give up!
You might be interested in this. And Dr. Clouse's website is: http://walkingwithataxia.com
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.
hey there bloodaxe
Wonderful post. One thing most of us do have and that's determination! What worked for you sounds so very sensible and your tips about referral to a neuro physio will help anyone who hasn't seen one already.
Thank you
S-J
So good to read this. I have been finding it harder to walk, since having to use a scooter at work. Will get cycle pedals to build up my strength and I can do it whilst watching tv.
I`ve recently got a tricycle, off fleabay, when I have converted that, I shall start peddling again (I used to cycle a lot, but can`t any more due to detioration of balance) I don`t have a t.v. but will peddle to the gym and try and keep my legs working.
Tallulah said:
So good to read this. I have been finding it harder to walk, since having to use a scooter at work. Will get cycle pedals to build up my strength and I can do it whilst watching tv.
I excercise most days (an excercise regime I`ve developed myself, concentrating on core and upper leg strength, as the attitude I seem to get is "you`re getting physiotherapy already" Money`s so tightened up, although I`ve paid into the system for the best part of thirty years, they won`t provide physio. for more than one thing (torn muscle in shoulders) Speech has deteriorated over the last 18 months, and speech therapy say they can`t really help, as I`ve worked out for myself what I need to do. Physically, I literally can`t walk without support. (I just aim for something solid. and crash into it when indoors, and use the rollator out doors) so training balance doesn`t seem to work (althoughI do it) I`ll certainly have a look at the link you supplied (thanks for that) Luckily, so far, my eyesight is not affected.
Kay said:
You might be interested in this. And Dr. Clouse's website is: http://walkingwithataxia.com
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.
Great post, Kay! Thank you..., ;o)
SO right you are!! I started training my upper legs some weeks ago on a daily basis. At home:) just by holding on to a rail waist high and doing squats as far down as possible and holding the squat position as long as I can. My muscles after those first few days were killing me. Telling me actually that I had neglected them for quite some time. After that it was peanuts. Muscles have gotten used to my new 'hobby' and am increasing the number of squats every time when it starts feeling like peanuts. My legs after these few weeks are much stronger already. They are the carriers of our bodies, right. So GIVE them what they deserve:):)
I suffered rapid atrophy of upper leg muscles before the Ataxia anyway, but it is even more rapid now. I`ve found that if I lapse for even less than a week, my legs feel as weak as a kitten. I use a rucksack filled with weights, as my shoulders are torn so I can`t use the machine in the gym.
Elle Strik said:
SO right you are!! I started training my upper legs some weeks ago on a daily basis. At home:) just by holding on to a rail waist high and doing squats as far down as possible and holding the squat position as long as I can. My muscles after those first few days were killing me. Telling me actually that I had neglected them for quite some time. After that it was peanuts. Muscles have gotten used to my new 'hobby' and am increasing the number of squats every time when it starts feeling like peanuts. My legs after these few weeks are much stronger already. They are the carriers of our bodies, right. So GIVE them what they deserve:):)
I keep telling myself " keep moving ! "
Can you please tell me exactly what you did, I can’t walk at all and I want to change that
Stubborn,
Look into balancewear belt , it has helped many people ( I personally haven't used yet)
Hi there Stubborn..start by doing the squats I mentioned above. You need to strengthen those upper leg muscles. So GET TO WORK:):) I did and still do, every day. Not loving it in any which way. A necessity, that's ALL it is. And this ALL means business. So get your motor running:):)
Elle , Do you have any youtube links ?
Nothing in particular Sunny. The squats I do are just common sense squats like in a gym or yoga. Only thing I added is holding on to something, which is common sense for us ataxians, right. You could look up Feldenkrais movements, Lots of them on YouTube. GOOD luck:):)
sunny8088 said:
Elle , Do you have any youtube links ?
Thanks Elle
Thank you so much, I had no clue about balance wear belts that’s awesome.
Thank you Elle for the motivation and suggesting squats, I just fall whenever I stand but I gotta take the falls to get results I guess. Iam so ready to hit this disorder head on and kick it out of my life.
HOLD IT:):) I am not promising a 'cure' here. To kick ataxia out of your life, you say. Aah..we wish. What I am saying is you HAVE to keep your leg muscles strong to keep up and going as long as possible. Ataxia is there for keeps and always progressive. Movement will slow that progression down or might even stabilize. Look up the site of Dr Thomas Clouse. He has lots of helpful suggestions:):)
Stubborn said:
Thank you so much, I had no clue about balance wear belts that's awesome.
Thank you Elle for the motivation and suggesting squats, I just fall whenever I stand but I gotta take the falls to get results I guess. Iam so ready to hit this disorder head on and kick it out of my life.