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We have a new member! Please welcome Kay


Posted by Webmaster , 2002/06/19, 09:13:40   Archive
Kay, Welcome to the Myositis Support Group Discussion Board!

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Re: We have a new member! Please welcome Kay


Re: We have a new member! Please welcome Kay -- Webmaster
Posted by Pam Parnell ® , 2002/06/20, 06:57:11 Top of Thread Archive
Welcome Kay,
My husband Tom was dx with IBM about three years ago. I have found that this support group can be very caring and helpful. Please post as often as you'd like. Take Care. Pam


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Re: Re: We have a new member! Please welcome Kay


Re: Re: We have a new member! Please welcome Kay -- Pam Parnell
Posted by Kay ® , 2002/07/03, 20:22:48 Top of Thread Archive
Hi Pam. Thanks for writing to me. My husband was
diagnosed with ibm about 3 years ago also. They
say this disease runs slow, but I'll tell you
it runs too fast for me. Does your husband wake
up from pain in the arms and legs at night?
Has he fallen a lot? My guy is using a walker
now it's much better this way It's really good to
talk to someone going through the same thing.
Kay


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Re: Re: Re: We have a new member! Please welcome Kay


Re: Re: Re: We have a new member! Please welcome Kay -- Kay
Posted by Ann ibm ny ® , 2002/07/05, 16:22:23 Top of Thread Archive
hi..i'm the one with ibm in my family...dx at age 52..10+ years ago..and you're right...they say slow but my incapacitation seemed pretty quick to me..i'm sending you some stuff by e-mail that you and husband might find helpful...take care Ann

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Re: Re: Re: We have a new member! Please welcome Kay


Re: Re: Re: We have a new member! Please welcome Kay -- Kay
Posted by Pam Parnell ® , 2002/07/04, 14:46:34 Top of Thread Archive
Dear Kay,

Tom is not much of a complainer. I sometimes wonder just how much pain he is in. He does tell me ever so often that his legs hurt but doesn't really say much more than that. He used to fall quite a bit like Lou said, but he purchased a powerchair in January and that has helped alot. Only fallen twice since then, all of them in the house. He uses his chair all the time when he goes outside. Those falls outside were the worst, never knowing when they would happen. He started staying home more before he got the chair, now he goes everywhere. He has just begun to use his walker alot around the house, mostly uses his cane though. I was given some good advice earlier about the falling, make sure your husband is paying attention to what he doing while he is walking, not talking while he is walking just focus on the walk itself has helped him.

I also have found that the progression has been pretty fast. I'm not sure what we compare this to, but it does seem that in the last year, Tom has gone through alot of changes. Let me know if I can help in any way. I have found the support here wonderful. As a matter of fact, there has been some pretty good advice given out. You will learn more here than from any doctor or book and everyone here really cares about you. Email me if you would like pampar101@yahoo.com Hang in there and take care. Pam

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Re: Re: Re: We have a new member! Please welcome Kay


Re: Re: Re: We have a new member! Please welcome Kay -- Kay
Posted by LOU GEMUS ® , 2002/07/04, 02:00:20 Top of Thread Archive
Hello Kay

I was dx with IBM in 96 and believe it actually

dates back to about 89-90.

I have the consolation of being pain-free. I used

to fall on the average of once every 10 days, but learned

to avoid this greatly.------First of all, I avoid

falls the off-balance fall by always looking down as I walk

and watching where I walk, and thereby always contolling

my balance. I have had only one fall of this nature

due to carelessness in the past six months.

Earlier, I also was subjected to both of my knees

giving out at the same time with resultant bad falls

on my back and to my head.

These falls usually followed my carrying a box

or similar where it required my both hands. We, my wife

and I ascertained rightly or not, that this could create

a downward pressure on my knees with the resulting fall.

For over eight months now I have refrained from carrying

anything in this manner------and I have not suffered any fall of this nature since - Lou

of this type since

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