Old 02-03-2011, 11:30 AM #16 (permalink)
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Default Re: Help Anyone?

Thanks again for all your words of encouragement and support.

I have found this thread so helpful in coming to terms with our situation that I decided to show it to my husband today. He was initially a bit angry with me as I had promised him that I would stop going on the internet and trying to diagnose him myself using wikipedia! Anyway, after his initial peed off reaction he actually spent quite some time on the forums. This prompted a long discussion between us both about how we are going to tackle this going forward.

Alyoop - your point about the two guys you knew who 'had to forge ahead with their dreams regardless'. Really struck a chord, thank you.

I was so happy because Hubby then decided that he was going to go back to the gym this afternoon for the first time in a while as this was such a big part of his life. I made him promise he would take it easy and do something non-impact It was a bit of an anti climax because he decided to go swimming and had to get out the pool after two lengths because he couldnt feel his legs.

Despite this set back he has asked me to ask you guys if anyone has found that exercise has helped their symptoms (spacicity in particular) and if so, what? He finds general walking causes lots of back pain etc because he is walking with an odd gait so I am a bit unsure where he wants to go with this but I said I would ask!

Many thanks again.
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Old 02-03-2011, 12:04 PM #17 (permalink)
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Danni, I am working on my excerise with limited success. I am walking long distances albeit slowly. I had a lot of back pain at first because my gait is crooked, I took it slowly at first and now my body has altered and I do not get back pain anymore. I am swimming most days as we have just put in a swimming pool. I could only do 3 lengths (12 metre pool ). I have a very weak kick as my weakness is almost completely in my hips and just 1 foot. Now I am doing 15 lengths and just mainly using my arms. He could try approaching his swimming as an arm exercise, leaving legs to rest.

Make sure he only does what is comfortable. Don't force your muscles once they are tired. It's good to build up unaffected muscles, but leave the affected muscles either alone, or do very gentle excercise only. I sat around feeling frustrated and really gave up on my future, now I am at a stage where I can forge ahead, like my ms patients and do what I can.

Just don't let him overdo it. I went for a long 1 1/2 walk for 3 days in a row this week and was too tired to even eat tea last night and had to get help getting upstairs! Just be gentle!

Cheers Aly
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Old 02-03-2011, 12:07 PM #18 (permalink)
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Forgot to add that research has proved that excersise in neurological conditions, decreases fatigue and wards off depression.
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Old 02-03-2011, 01:42 PM #19 (permalink)
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Default Re: Help Anyone?

Whenever we get a newly diagnosed person the HSP/PLS mailing lists, I send them an email with 10 or 15 pictures - just random stuff from the last 6 years or so. In most cases, people who fear disability don't understand it's not as bad as it seems as first. They seem to appreciate seeing proof of a future that can include hiking, wedding dances, playing with the kids, organizing events, etc reassuring. If you think it would help him, PM me your email address and I would be happy to share.
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