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What a disease

Posted: Mon Jul 29, 2019 6:58 am
by robbie
If only you knew what your life has in store, i had so many plans i took it all for granted.

Re: What a disease

Posted: Mon Jul 29, 2019 1:44 pm
by robbie
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When doctors give you the ms diagnosis their only thinking short term, not the fact of the person being sick for a lifetime. I don't think theres any urgency with ms after all at least it won't kill you ,what happens later is you get left in the background of life. So many dreams in my head but I took it all for granted. The first 3rd of life had some good times :)
5 yrs before diagnosis:)

Re: What a disease

Posted: Thu Aug 01, 2019 10:59 am
by robbie
Last post on Betaseron was in 2017 I took it for 8 yrs or so until I declined enough to be taken off. There was I guy there that posted he hadn't had a relapse in 14 yrs without any drugs at all. It had just got approved and I remember the info on it showed it was just above 33% affective at slowing down relapses. So I started hoping I would be one of the 3 of 10 when I asked after I had progressed and stopped, my Neuro said well you could have been worse. Wonder if the money tree "Betaseron" has lost all it's leaves. On to the next..

Re: What a disease

Posted: Fri Aug 02, 2019 1:05 pm
by robbie
EDSS score and your thought process go hand and hand as well as getting off the roller coaster of RRMS. Ups and downs , better then worse , what im doing is working, no it's not , oh wait yes it is! You have to do everything you can, and then the ride stops things become much more clear it's not going away.

Re: What a disease

Posted: Tue Aug 13, 2019 1:05 pm
by robbie
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You never think long term, ms you f____er !!

Re: What a disease

Posted: Mon Aug 19, 2019 4:40 pm
by robbie
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So much talk about doing everything you can, I am.

Re: What a disease

Posted: Tue Aug 20, 2019 12:25 pm
by robbie

Just venting...

Re: What a disease

Posted: Tue Aug 20, 2019 1:51 pm
by robbie
Diseases and chronic conditions that can contribute to muscle atrophy include:

Amyotrophic lateral sclerosis (ALS): Also called Lou Gehrig's disease, ALS includes several types that damage the motor nerve cells that control the muscles.
MS: This chronic condition occurs when the body's immune system attacks the central nervous system, causing harmful inflammation in the nerve fibers.

Re: What a disease

Posted: Tue Aug 20, 2019 3:00 pm
by NHE
robbie wrote:
Tue Aug 20, 2019 12:25 pm
Just venting...
Hi Robbie,
Is there something you could do like a work at home arrangement over the computer? If you can design such a functional lift for yourself, then you could likely design other useful things as well.

Re: What a disease

Posted: Tue Aug 20, 2019 4:32 pm
by robbie
Thx NHE but that hoist was a pretty simple way to avoid the cost of the real thing. I am completely useless with computers, anything I know or can do I need my legs.

Re: What a disease

Posted: Thu Sep 19, 2019 1:03 pm
by robbie

Re: What a disease

Posted: Mon Nov 18, 2019 1:02 pm
by robbie


This is one of my favorite songs and albums the title Running to Stand Still is literally what I've been doing since diagnosis in 92 , 5 yrs before I was on a sail boat for three months mostly listening to U2 only thinking of what's next , what will I do with my life. When i hear it now it brings back incredible memories and good times. Where I am now with the ms there's some lyrics in this song that to me describe what it's like in my head.

You've got to cry without weeping
Talk without speeking
Scream without raising your voice
You know I took the poison from the poison stream and floated out of here


So much of it is a battle inside yourself that no one sees, ms takes you from one spectrum of life to in some cases the seventh tower and only one way out. When you think about it, life is memories and I'm so grateful for the ones I made when I was younger.

Re: What a disease

Posted: Wed Dec 11, 2019 5:09 pm
by robbie
My wife and I are having a reno done mostly for a roll in shower but it's slowly becoming more than that :) I notice how many people are sick colds, flu, ect my wife and people she works with always got something, you would think with my state of health I'd be catching it ! Nope healthy as horse :))