Other people's ideas

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Jaded
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Other people's ideas

Post by Jaded » Sat Feb 09, 2019 3:44 am

I stopped working in town a while a go and have been working at home instead.

I did this partly because it was hard work doing the commute, and also my physio said my body could not have coped. I thought it would also mean I could go to the gym more often.

In the time I have been at home I have had more health issues than ever before. I can't say for sure, but it feels like the less I move the less my body feels it can move. Also what is absent at home is the banter, the communication with other people and I miss that. I think both physically and mentally this has not been a good decision.

So just a tip for anyone able-bodied MSers - never underestimate what your body can do. Don't stop - it's hard to get that function back.

ElliotB
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Re: Other people's ideas

Post by ElliotB » Sat Feb 09, 2019 4:20 am

I set up a mini gym at home to avoid driving and save time. Don't know if this is a possibility for you but if you have the space and can afford the equipment.

Your advice "never underestimate what your body can do. Don't stop" is spot on!

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Scott1
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Re: Other people's ideas

Post by Scott1 » Sat Feb 09, 2019 4:36 am

I, also, completely agree with you.

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Re: Other people's ideas

Post by Jaded » Sat Feb 09, 2019 5:20 am

I thought about that many times ElliotB but decided I needed to actually get out and see people at the gym.

Maybe I should have done it the other way around - the home gym and kept up the work with commuting as far as I could.

I don't have the resources to do that now but I wish I had a bike or something like that at home. I have exercise DVDs and they help but not having made it to the gym recently my body feels like it's ceasing up.

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Re: Other people's ideas

Post by Scott1 » Sat Feb 09, 2019 3:23 pm

Hi,

When you have reached that point where your body is just getting too tight, I found the only thing that works is 2x25mg of Dantrium.

It is a recognised MS prescription drug but it seems to be rarely used. Probably because it is so effective that people think they feel worse rather than better when they take it. As a result it is rarely prescribed.

What its doing is blocking the release of intracellular calcium so it can't trigger a muscle tightening process called excitation/contraction coupling. (Try youtube for details). When your muscles can't tighten you feel very weak and unsteady.

With MS, this is because a lot of our muscles loose strength as we loose movement. The only way to recover the muscle function is to use them. The Dantrium doesn't weaken you but it shows how weak you have become. After a week or two you start to regain strength if you are exercising. It's definitely not a case where you take a tablet and you are suddenly better.

As long as the dose is low, Dantrium is safe but high doses damage the liver. Once you have tried it, you realise you would not want a high dose.

I take Dantrium daily and would freak out if it was taken away. It is critical to exercise if you try it otherwise you might fall flat on your face.
The Dantrium exposes where you are. It doesn't fix you, just eliminates tightness. You have to do the work.
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Re: Other people's ideas

Post by Jaded » Tue Feb 12, 2019 6:57 am

Thanks Scott1

I shall ask. My neuro says it’s not tightness. How would he know? I’ve changed neuros now but only see them once a year. I shall email the new one and ask. Does it affect your bladder/bowels though?

I’ve been fighting off various infections so not been able to give the gym a good try but I do remember feeling much stronger after cycling, almost as good as I used to feel after a short run.

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Re: Other people's ideas

Post by Scott1 » Tue Feb 12, 2019 1:20 pm

Hi,

I don't think it would have any direct effect on bowel or bladder. It wouldn't change the function. If tight skeletal muscles indirectly inhibit function then it might improve things as those muscles relax.
The dose is very low (at 2x 25mg) but it is extremely effective. There is a transition period where you just feel very unsteady. That is why you need to exercise. If your muscles are tight and weak then you barely move, if they are loose and weak you won't get off the floor. The answer is to keep moving and exercising till the body takes advantage of the relaxed muscles.
The sudden impression that you are weaker is intimidating. Stay away from stairs until you are confident as there is a real risk of falling down. As you keep exercising the strength and stability comes back.
Dantrium is a way of dealing with tightness only. It's not an MS cure.

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Re: Other people's ideas

Post by Jaded » Thu Feb 14, 2019 1:42 am

Thanks Scott1

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