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Quiet guy in the back of the room aka I'm posting again

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  • palmtree
    replied
    You donít sound like someone who needs advice. You have done a lot for yourself to keep your life. You lost all that weight, you got on a strong DMD(although it saddens me that there are people in wheelchairs when it might have been prevented with a timely sock of Tysabri or Orcrevus).

    MS is about conserving energy. A wheelchair is fabulous if you are strong enough to push it(I am not so I am stuck with walking luck a duck). Right before my father died of heart failure, he had some awakenings that he couldnít wait to tell me about. (They may have been morphine induced but, to him, they were important). He said, ďI am going to get a WHEELCHAIR so I donít have to waste all my energy walking. And things are going to be different from now on.Ē He died three days later and never got his wheelchair.

    But about posting, I am, too, right now. Itís been a long hot humid summer and impossible to go out.

    We all need a little company. Nothing wrong with that. You love your wheelchair. Maybe you can learn to do tricks with it. I had a neighbor who who everyone loved who could do the most amazing things with his wheelchair. He was born without knees so his life was spent spinning that thing around.

    Leave a comment:


  • KoKo
    replied
    Originally posted by ReverseFlash View Post
    My job tried to screw me over but I got Permanent disability (thankful)

    I have found a THIRD neurologist because the last two just didn't give a crap about me as much as my health care provider. I'm now on Tecfidera and other than the nausea, the stuff seems to be working. (One of my lesions is shrinking!)
    I have a standing ability but fatigue is still an issue so I got a wheelchair but when I was active (239LBS) my inactivity put some weight on me (305LBS) so I and my fiancee both received the GASTRIC SLEEVE SURGERY. I am down to 287 LBS.
    ReverseFlash

    Congrats on your SSDI approval, finding a better neurologist, a DMD that is working for you, and your gastric sleeve surgery and weight loss! Good for you!

    Originally posted by ReverseFlash View Post
    I want to do things like I did before (with bursts of energy like I have) but Ol' Mr Fatigue comes along and says that's a no go. Makes me feel like useless in household chores and home upkeep. If I could beat the fatigue and get back my balance (I had the agility of a cat, it was something to see) I'd be in a whole new arena.
    I LOVE this wheelchair. Not hampered where I struggled to walk before but the worry is "you can't give up on walking. The wheelchair will weaken your legs. Keep walking" but I walk like Frankenstein's Monster (I have the scar on my head from when I was 7, seriously) and I loose all strength if I pick something up AND walk v.s. the chair where I am good to go when others are tired and need to rest.
    Don't know what to do on that end.
    I use a 4 wheel rollator walker (with a firm seat) in order to be able to move around in my apartment. It is very helpful with my balance. I am able to carry items around on the seat.

    I rest often to offset the motor fatigue.

    Originally posted by ReverseFlash View Post
    Feel guilty complaining too. There are those with our affliction that can't even move without assistance. To those that read this, I apologize. I shouldn't gripe. I should just be thankful. I just need some advice and can't find it elsewhere. Thought I could get some here.
    I don't see your post as complaining at all - you're just sharing what's going on in your life, so thank you for that!

    Could you get a referral to PT, or have a physical therapist come to your home?

    Also, there are several exercises that can be done while sitting, which you can google to find you tube videos.

    Thank you for the update, and keep us informed with how you are doing.

    Take Care

    Leave a comment:


  • kmallory1
    replied
    A physical therapist told me not to make mobility my exercise program. Do what you can in order to maintain your mobility, whether itís a cane, scooter, or wheelchair.

    I had put off getting a power wheelchair way past the point where I needed one, thinking struggling with a walker would keep me moving longer. Really that just kept me from being able to do things.

    A separate exercise program can help you strengthen the muscles that still work.

    Leave a comment:


  • Quiet guy in the back of the room aka I'm posting again

    Hi everybody.
    So, since I last posted:

    My job tried to screw me over but I got Permanent disability (thankful)
    I have found a THIRD neurologist because the last two just didn't give a crap about me as much as my health care provider. I'm now on Tecfidera and other than the nausea, the stuff seems to be working. (One of my lesions is shrinking!)
    I have a standing ability but fatigue is still an issue so I got a wheelchair but when I was active (239LBS) my inactivity put some weight on me (305LBS) so I and my fiancee both received the GASTRIC SLEEVE SURGERY. I am down to 287 LBS.

    I want to do things like I did before (with bursts of energy like I have) but Ol' Mr Fatigue comes along and says that's a no go. Makes me feel like useless in household chores and home upkeep. If I could beat the fatigue and get back my balance (I had the agility of a cat, it was something to see) I'd be in a whole new arena.
    I LOVE this wheelchair. Not hampered where I struggled to walk before but the worry is "you can't give up on walking. The wheelchair will weaken your legs. Keep walking" but I walk like Frankenstein's Monster (I have the scar on my head from when I was 7, seriously) and I loose all strength if I pick something up AND walk v.s. the chair where I am good to go when others are tired and need to rest.
    Don't know what to do on that end.

    Feel guilty complaining too. There are those with our affliction that can't even move without assistance. To those that read this, I apologize. I shouldn't gripe. I should just be thankful. I just need some advice and can't find it elsewhere. Thought I could get some here.

    Hello again.
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