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Is there any aspect of your condition... - Leukodystrophy Su...
Leukodystrophy Support
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Is there any aspect of your condition where you would support?
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MineshGokal
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As a 63 yrs female with AMN trying to keep as active as possible. I eat healthily a exercise a lot (gymn 2/3 times a week, balance a co-ordination classes 2 times a week and weekly Aqua fit). Now use 2 crutches or a trolley walking but find I am suffering with my feet!! The two things I need to get around, sensation has not been good for some time, spent the day recently with a pound coin in shoe, didn't feel a thing!!
My feet feel permanently like ice, but can feel warm to touch, left foot worst and am suffering a lot with cramp in left foot, starting from toes then up into ankle!!
I know I am starting to curl toes when walking and try to keep tapping feet if sitting to try and get more circulation!!
Anyone else suffer and have any more ideas, have tried 2 pairs socks, thermal socks but does not make any difference!
Never thought I would be asking about feet!!!!!
Sue
Thank you for sharing your experience Susan. I am pleased to read you eat healthily and get involved in exercising regularly. I am really sorry to read about your problems regarding leg circulation.
Do you have any any information or advice needs? Please feel free to share with us below.
Thank you for sharing. I don't know if you have tried this or not. It is just a suggestion. Maybe getting a massage might help. As a licensed massage therapist, I have learned that massage is good for increasing blood circulation as well as relaxing tightened muscles. Please check with your physician before doing so especially if you have other medical issues on top of ALD. I hope this helps.
Has massage been used to help with the muscle stiffness & other symptoms of ALD? Just curious.... I have wanted to do so on my grandson. Any feedback is appreciated.
Hi Keawes_Gmama,
Thank you for your great question. Would you like us to send an email to our members to see if anyone has any experience of using massage for muscle stiffness and symptoms of ALD?
Thanks,
Minesh
Yes please. I would love to hear the answers...
Will send an email today. Hopefully you can get some more stories about massages/muscle lossening tips.
Minesh
Hi Minesh, I will look forward to hearing more about this. Thanks,
Julie
Thanks Julie_.
A member has kindly sent me this link to DIY Joint Pain Relief earlier this week - which he has found to personally help him with his condition. Please feel free to check it out:
do-it-yourself-joint-pain-r...
Minesh
Hi Keawes_Gmama,
A member has kindly sent me this link to DIY Joint Pain Relief - which he personally finds useful. Please feel free to check it out:
do-it-yourself-joint-pain-r...
Minesh
When my son was alive he would get a massage monthly for his muscle stiffness. It helped him a lot it relaxed him enough so he could sleep. I hope this helps. Terry
Awesome to know. My grandson is having difficulty relaxing. He is tense even while he is sleeping. Thank you.
Thanks all, yes I have a deep massage once a month and it helps greatly, having to pay can't afford more. So helps loosen muscles and I feel good for a few days then back again.
Sue
Like Sue, I have regular exercise (boxing 3 times/week) and do physical therapy exercises and stretches every day. I will be 51 this year and have wondered how long I can continue my routine. Thank you, Sue, for sharing your experience! I know that everyone's situation will be different but it is helpful to hear how others have been faring.
I am happy to hear that massages help. However, in my brother's case, he finds any manipulation of his body to be very painful. Granted, his is a more advanced case and he went undiagnosed for many years, but can someone suggest other kinds of therapy to loosen up muscles?
Hi Julie,
Thank you for getting in touch. I am pleased to read you find regular exercise and physical therapy useful. Would you like us to send an email to our members asking if they have any suggestions for loosening muscles?
Minesh
Hi Julie, glad to hear it helps you as well. I find the Aqua fit really good, my legs have that good aching feeling after and it may sound silly but I can feel my legs more!!!
What about hydrotherapy for your brother, the water is warmer and exercising in water may be more helpful, Sue
Good luck with that Julie, Sue
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