I don't know about anyone else but every time I go for my physio treatment it kills me. As an ataxian I know I cannot strenghten my muscles only maintain what I have but by the time I'm finished my session, I'm feel worse than before I went in. I leave the physio room and my arms and legs are ready to fall off. I start to walk home and I'm wobbling all over the place. I feel bad enough when I'm out walking with every one staring and muttering under their breath that I must be drunk(even though it is early in the morning). I'm actually thinking of packing in the physio but at the same time I like going and meeting people as I don't get out much because of my wobble. What a dilemma. Anyone any ideas? Fran
Ya know Fran the man,
The first thing I thought about while reading this was maybe your emotions are giving you reactions. I know with my ataxia my emotions play a hugh roll in my ataxia. Tha's why I really have to monitor what goes in, because what goes in comes out. I say!Garbage in Garbage out
I wonder if you talked with your phyo about that maybe it can trun around for you to help not hinder you? If it doesn't change I'd change and get someone that gets that! :0) I think it's just a choice! :Hope things get better for ya! Let us know ok? :0)
0)
I forgot to mention that I use Arnica Gel or cream on my legs etc, if I get stiff or pain. I rub it in kinda hard to it get in deep. f it's really bad I've been known to do it 2 times!
I keep one tube in my glove box, by my t.v.bed, everywhere. I love that stuff! I get mine at Whole Foods but have gotten it on Amazon too! USA OR UK HERE IS UK links:
or
Read what other's have to say about it too! :0)
.Hi Jeannie, I do have to keep my emotions in check, especially when the kids are around. I tend to keep to myself if I'm feeling low which probably is not the best idea but I don't want to upset them. But no, when I come out of physio, my legs and arms are so fatigued, I cannot walk straight because I feel so weak. I just haven't the strength in my legs. I begin to wonder if it's worth doing.
Me again Jeannie, I just had a look at the Arnica gel. I think it might be worth a try. Thanks
Let us know how it helps you! I'm happy that your gonna try Arnica gel,
I don't think you will be sorry. Remember to massage it in your legs hard to it gets through the layers of meat! :0) :0) :0)
I think anything more natural is worth trying! Hope it works for you! Let me know ok? :0)
Fran the man said:
Me again Jeannie, I just had a look at the Arnica gel. I think it might be worth a try. Thanks
We went for a neuro-physio assessment for the first time. She said we need to go 4 times a week for 31/2 hours for a few weeks - intensive for short period more effective than a few times a week for over a long time. She said it's to recondition your body, and retrain the brain - and then we stop and should see the benefit for up to a year. She warned he'd be exhausted, but shouldn't make things worse.
Is that how it is for you, like you feel worse right after - but over all your balance is better?
*** my ALTITUDE of my ATTITUDE my a huge difference *** and who told you that ..." As an ataxian I know I cannot strenghten my muscles only maintain what I have" ... I do agree that it takes WAY more time and effort and the amount may be very limited, but it has been shown/proven that exercise does help in SO MANY different ways (attitude for one) and in my life I may have not gained much in muscle mass, but it the muscle CONTROL area I have gained big time! (only by God's grace.) In my book control is better than strength! Just my .02, but the part your attitude (mental health & brain) affect (yes, even physical & biological stuff) is closer to 80 -90 % and my live is living, breathing proof of that - maybe to nobody else but me, but I'm the one that matters! Make it a GREAT day :)
Hi,
I do feel the same after my PT. I get exhausted and my legs particularly feel so weak that I am ready to fall!
As I use a wheel chair it is bearable but to transfer myself into the car has to be done with too much concentration! Then reaching home and climbing two stairs is a song and a dance. I try to be positive and do not want to give up PT as it is an oppurtunity to meet people and preserve my muscle strength. My emotions do take an upper hand at times but I catch it and summon to leave me! I honestly feel that you should continue your PT despite of its short coming. Try not to give up. All,the best.
Can you please be more specific in what you do?
David (Spinner) Henry said:
*** my ALTITUDE of my ATTITUDE my a huge difference *** and who told you that ..." As an ataxian I know I cannot strenghten my muscles only maintain what I have" ... I do agree that it takes WAY more time and effort and the amount may be very limited, but it has been shown/proven that exercise does help in SO MANY different ways (attitude for one) and in my life I may have not gained much in muscle mass, but it the muscle CONTROL area I have gained big time! (only by God's grace.) In my book control is better than strength! Just my .02, but the part your attitude (mental health & brain) affect (yes, even physical & biological stuff) is closer to 80 -90 % and my live is living, breathing proof of that - maybe to nobody else but me, but I'm the one that matters! Make it a GREAT day :)
I think it's supposed to hurt. No pain, no gain. Maybe reward yourself by taking a cab/car home. I run for a 1/2 hour a day and the last few minutes are super-hell but I imagine that I am running for the gold in the Olympics (visual imagery) and my husband and brother are cheering me on and its now or never.
First off, you CAN strengthen muscles. Second, depends on what you do in 'physio', and how well your therapist understands ataxia...very few do. Third, you have an alotment of strength and energy for the day. If you use it all early, there's none left for the rest of the day. Fourth, use a walking stick (not a cane) when tired and wobbly. Youu need to stretch muscles and keep joints limber....check out chair yoga, and pick up some small kettle bells for strength training.
neta said:
I think it's supposed to hurt. No pain, no gain. Maybe reward yourself by taking a cab/car home. I run for a 1/2 hour a day and the last few minutes are super-hell but I imagine that I am running for the gold in the Olympics (visual imagery) and my husband and brother are cheering me on and its now or never.
That works for body builders....not ataxians. If t hurts, your'e overdoing. Slow and easy wins the race....
My therapist knew nothing and treated me like a stroke victim so I left and devised my own routine part "therapy" (balance mainly) part strength building. The physio suggested hydro-therapy but I never did it. Maybe I should? I have no pain just exhaustion and, of course, dizziness, at the end of the run.
Jonas Cepkauskas said:
neta said:I think it's supposed to hurt. No pain, no gain. Maybe reward yourself by taking a cab/car home. I run for a 1/2 hour a day and the last few minutes are super-hell but I imagine that I am running for the gold in the Olympics (visual imagery) and my husband and brother are cheering me on and its now or never.
That works for body builders....not ataxians. If t hurts, your'e overdoing. Slow and easy wins the race....
Hi findacureSCA3, No. I do all this stepping on the stairs, then sitting and standing with one foot in front of the other. I wobble when I do them and my legs feel fatigued really quick but I keep pushing myself to do them because I don't want to believe that I cannot do a few simple tasks. But when I'm walking home afterwards I find myself going side to side more than forward. It's hard feeling useless.
FindacureSCA3 said:
We went for a neuro-physio assessment for the first time. She said we need to go 4 times a week for 31/2 hours for a few weeks - intensive for short period more effective than a few times a week for over a long time. She said it's to recondition your body, and retrain the brain - and then we stop and should see the benefit for up to a year. She warned he'd be exhausted, but shouldn't make things worse.
Is that how it is for you, like you feel worse right after - but over all your balance is better?
Fran, your determination is inspiring. Just reading your experience is also helping us with ours. You are not useless (but I know it's really hard when things that used to just be automatic is difficult). I am sure you are a blessing to many more people than you realize! You are a blessing to us all here. God bless Fran - keep us posted on how your physio is going, and if the lotion/cream helps.
Fran the man
I started PT Last week. I have a girl that really knows her stuff. She tested me in a lot of things. And she said I could get some strength back. Some anyways but I have to work at it. Its all very easy. I lay on the floor a lift my limbs up. To me its mostly the attitude. Mine sucks! I really hope the Gel works. If your not happy with your Therapist ask for a new one. I did.
So true!
FindacureSCA3 said:
Fran, your determination is inspiring. Just reading your experience is also helping us with ours. You are not useless (but I know it's really hard when things that used to just be automatic is difficult). I am sure you are a blessing to many more people than you realize! You are a blessing to us all here. God bless Fran - keep us posted on how your physio is going, and if the lotion/cream helps.
That is great that you can run. A lot of us cant. But I don't think it is suppose to hurt. Not for ataxia.
neta said:
I think it's supposed to hurt. No pain, no gain. Maybe reward yourself by taking a cab/car home. I run for a 1/2 hour a day and the last few minutes are super-hell but I imagine that I am running for the gold in the Olympics (visual imagery) and my husband and brother are cheering me on and its now or never.
ANY type of water activity is essential...swimming, even just walking around waving arms under water. You can't fall!