I couldn't keep this to myself. I am so EXCITED about what has been happening!
I have been going to occupational therapy and physical therapy (that specializes in neurological conditions not orthopedic). They have been helping me so much. They are teaching me to keep my core tight and how to balance my weight when I do things. They are teaching me to walk, walk down small hills, rough surfaces (snow, yard), even just balancing (stepping over things).
I am tripping less, off balance less. They are helping me with my everyday life. For the first time in my life, I walked through the whole department and down the hall without tripping or even walking into the walls.
I don't know if this is temporary or not. OMG!I have hereditary CSA2 and what they are helping me with is working. For the first time in my life I have something that I never thought was possible......HOPE.
This is definitely not a cure but I see the differences in my life and temporary or not this is awesome!
Hey Dancermom, I have kept track of your posts. That is something that I never do. With you, though, I felt I could help as well as being interested in your posts. I am so very happy for you! I hope you continue to advance in your health.Good for you!
It really doesn’t matter what you have or what type of ataxia. You are doing something rhat is prove to work. Have you ever heard of Dr Tom Clouse? I have worked with and it changed my life. His website is walkingwithataxia.com. The thing that caught my ear was core work. Super! Try to make sure that you have knee and ankle bend when you walk.
So happy for you Dancermom!!! Keep at it- you can do it girl! I do find that I am stronger from doing weights but my tripping hasn't decreadsed. Where do you find a physical therapist who specializes in neuroloical issues?
I'm so happy you're happy. The wonder of exercise! Low hanging fruit is what I call it. If only other people will do it. There's no magic bullet. Only hard work!
OMG, this is great news, to give us hope. I have SCA3 and everything you say happens to you, happens to me. I live in Australia but will definitely check that out here.
I’m so happy for you.
Keep improving.
Dr. Clouse and his website is what inspired me to not just sit back and there were things I could do. I thought that the PT and OT therapists might be able to break it down. Everything starts with my core and shoulders back and down. I can't believe what this little adjustment makes.
wilbur said:
It really doesn't matter what you have or what type of ataxia. You are doing something rhat is prove to work. Have you ever heard of Dr Tom Clouse? I have worked with and it changed my life. His website is walkingwithataxia.com. The thing that caught my ear was core work. Super! Try to make sure that you have knee and ankle bend when you walk.
It is going to be a therapist that they send people that have had strokes, maybe head injuries, maybe like cerebral palsy. It's not going to be a therapist that works with like knee injuries/surgery, back injuries/surgery. I didn't know there was a difference until I went to my occupational therapy evaluation. We were talking and she asked me if I had done any physical therapy. I told her I had but they didn't seem to know what to do to make my walking better. It was then that she explained there different types of physical therapy.
Being able to compare the two types I can say it makes a whole lot of difference. It seems like their mind set is different. The ones that work with neurological disorders are more interested in getting you up and moving and showing you correct ways and safe ways.
So happy for you Dancermom!!! Keep at it- you can do it girl! I do find that I am stronger from doing weights but my tripping hasn't decreadsed. Where do you find a physical therapist who specializes in neuroloical issues?
I have also found that ot has helped me! I feel hopeful! Core and shoulder strengthening is key. My speech has improved also. Therapist says core muscles are linked to speech. STAY STRONG!
I can attest to what Kay is saying. We need a PT who specializes in neurological problems. When I had my stroke, I could not stand nor sit on my own. After a few weeks of PT In a stroke Rehab center, I was able to walk I am still wobbly, but I walk) and could sit up without support. I still have tremors and am not coordinated, but I still walk and know how to cope when I have a balance issue.
These PTs are not easy to find, so if you cannot find one in your area, call a stroke Rehab Center. They might take you, or at least advise you as to where to find one.
Dear Kay, How wonderful! Kudos to you! I've done physical therapy, as well as aquatic therapy (in a pool) and found both very helpful! My neuro says, "just keep moving" (easy for him...,ha!). As Patsy said, you can retrain your brain (pathways) and I believe it! Keep up the great work, as I'm thrilled for you!!! Please keep us posted on any updates..., ;o)
