ppms

Hi Everyone!
I am Amina and I was diagnosed with MS in 1998. My life progressed as normal but for the constant fear that my MS might one day look like my mom's did -- the absolutely worst form of PPMS. So far it hasn't turned out that way.

Though I, too, have PPMS, the progression was really slow allowing time to accept and adjust. In the last four years the progression has been faster. Now I use a wheelchair and and there are numerous other losses of abilities. Everything I do is difficult. The only two acute events were an episode of optic neuritis and a very recent loss of most of the strength and dexterity of my dominant hand. Of everything, the hand is the single most devastating, -- except for the abject loneliness and isolation.

I survive by being grateful that my MS hasn't ravaged my body and my self as badly as it could have. I go about my life and do what I can. I have my difficult feelings but life isnt going to stop just for me. Once I've gotten out of the bed, the ball is set in motion. No matter how sad, lonely, or miserable I feel, the ball keeps rolling because the alternative is unthinkable.

#ppms #MultipleSclerosis

I am 37 years old and in a nursing home because my RRMS apparently progressed and I need a lot more help. It is miserable in here. I just wanted to know if anyone else out there is in the same position.

I'm a 47 yr old woman, mother, artist, living with #ppms The last year has been quite difficult. I'm now a full time wheelchair user, my arms are weakening, I've been in the hospital twice (never before), and I'm losing hope. I feel a fire inside has gone out. #Depression #MultipleSclerosis

MRI came back with no new lesions. Right now struggling to find my place in the working world, in a part time role. I can't drive or think clearly due to my cognition problems. Still moving forward...glad I still have a supportive wife to drive through with. I have MS but it doesn't have me! #MultipleSclerosis #ppms

It's been a while since I've felt part of a community, and it feels good. I'm diagnosed with primary progressive MS and have been using a wheelchair for a long time now. That's part of my life and it's shaped who I am, and my life continues to grow. I'm blessed with a wonderful wife, with family and friends who we see from time to time. I'm lucky.

What I miss though since going on disability and spending most of my days in a room in front of a computer, is community. People who you work with or who you see going to and fro, joining clubs, going to clubs, card games with the guys, walking around the neighborhood or going to the supermarket: all of these are places you rub shoulders with others, and they get winnowed down, down, down as it becomes harder and harder to get around. Over the years, they add up, people disappearing from my life, thousands of interactions lost.

So I work hard that the isolation does not overtake me, even if I cannot see them or shake their hands or hug them. I want to stay engaged, listen to what's going on with others, to trade ideas and lift each other up. And that's why I'm grateful for The Mighty and for you being with me now. Please introduce yourself and let's follow each other and bolster each other on our journeys! #Disability #MS #ppms #MultipleSclerosis

I have #ppms (A rare form of  #MultipleSclerosis) and I developed an application based on the #SpoonTheory to help track energy levels, moods and activities. It is free and I wanted to give back to the #ChronicIllness community. I'd love for you guys to check it out and give feedback. www.spoonieday.com

Today I was so tired I couldn't keep my eyes open. I was falling asleep mid drinking a glass of water.
#CheckInWithMe