What a disease

A forum to talk about the general challenges of daily life with MS.
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robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

What a disease

Post by robbie » Mon Jul 29, 2019 6:58 am

If only you knew what your life has in store, i had so many plans i took it all for granted.
Last edited by robbie on Mon Jul 29, 2019 2:19 pm, edited 1 time in total.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Mon Jul 29, 2019 1:44 pm

Image

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:)
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Thu Aug 01, 2019 10:59 am

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..
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Fri Aug 02, 2019 1:05 pm

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.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Tue Aug 13, 2019 1:05 pm

Image

You never think long term, ms you f____er !!
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Mon Aug 19, 2019 4:40 pm

Image

So much talk about doing everything you can, I am.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Tue Aug 20, 2019 12:25 pm


Just venting...
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Tue Aug 20, 2019 1:51 pm

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.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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NHE
Volunteer Moderator
Posts: 5315
Joined: Sat Nov 20, 2004 3:00 pm
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Re: What a disease

Post by NHE » Tue Aug 20, 2019 3:00 pm

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.

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Tue Aug 20, 2019 4:32 pm

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.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Thu Sep 19, 2019 1:03 pm

Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

robbie
Family Elder
Posts: 1294
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: What a disease

Post by robbie » Mon Nov 18, 2019 1:02 pm



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.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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