[nancymarie]

I'm sorry to see this Forum is so inactive.

I'd like to hear more from people with PPMS -- what your progression is, how you cope day to day, whether or not some of youlive alone. Tips on meds and coping.

My H has PPMS dx in 2000 but with sx starting in 1994. He worked until 2008 and just went into a WC this year. Still has upper body strength, just can't walk.

I wonder how this will all end? With him in a nursing home? I'm more scared than he is as he refuses to think about the future.

Sigh.

[kicker]

Was dxed 2002, think I had stuff I now recognize in 1994. In a chair 24/7 since 2009. Mostly have physical problems (no walking) but other than a little MCI (Minor Cognitive Impairment - Is it age or MS?) doing OK. Pain level not great (Neuropthy) but everyone is so different from another on this terrible Journey.
Part of thanks goodness I'm 55, no problems when raising my kids, Thanks goodness it's me and nothing for them but this ride isn't over yet. I hope little else will happen but won't be surprised if it does. My Neuro (Without words really) sees theres nothing he can do for me - no meds, etc. He no longer asks me to get MRIs, we both know I have PPMS and I hate them and so why bother with them? He answers my e-mails within 24 hours and will do most things I ask for if something comes uWas dxed 2002, think I had stuff I now recognize in 1994. In a chair 24/7 since 2009. Mostly have physical problems (no walking) but other than a little MCI (Minor Cognitive Impairment - Is it age or MS?) doing OK. Pain level not great (Neuropthy) but everyone is so different from another on this terrible Journey.
Part of thanks goodness I'm 55, no problems when raising my kids, Thanks goodness it's me and nothing for them but this ride isn't over yet. I hope little else will happen but won't be surprised if it does. My Neuro (Without words really) sees theres nothing he can do for me - no meds, etc. He no longer asks me to get MRIs, we both know I have PPMS and I hate them and so why bother with them? He answers my e-mails within 24 hours and will do most things I ask for if something comes up. I think this thread gets fairly unactive cause there's not much to say.
I think your husband is correct in not thinking and analyzing his journey. No one knows what will happen next. Doctors and others can guess but who knows?

[nancymarie]

Thanks for your response Kicker.

H hasn't seem his neuro in a year -- again for the same reason -- nothing can be done.

He only takes low doese baclofen but won't talk much about his discomfort. IN fact he pretty well wants to deny what's happening most of the time.

I guess that's his way of handling things and I have to accept it.

Just wish this disease would plateau out,leaving him with the function he still has. Don't suppose that ever happens though.

[PegMeerkatz]

Was dx in 1987 able to return to work in 1991, worked until 2001 (had an understanding employer as I had 3 major relapses during that time that kept me out 2 months or more besides just days I was not up to working). 2001 started having cognitive problems that interfered with my ability to do my job followed by mobility problems that forced me into retirement. Was given Avonex while in hospital in 2001 has a serious allergic reaction & almost died. After that never did return to work because between the cognitive problems & mobility problems I was unable to do my job. 2004 I was put on Rebif & had a "honeymoon period" lasting about 14 months where I almost forgot I had MS. But then I built up antibodies to the Rebif & had liver enzymes that were dangerously high. After a few months off Rebif I was tried on Copaxone but again had a serious allergic reaction. 2005 told I had SPMS. No medication (except to treat specific symptoms) from 2005 to present. Recently saw a new neurologist considered one of the best in treating MS. He gave me blood test for JVC virus hoping to put me on Tysabri. I tested POSITIVE so TYSABRI WAS OUT. Due to other medical conditions there is presently no medication that I can take.

The cognitive problems & fatigue severely limit my quality of life. I also have mobility problems use either a rollator walker or power wheelchair. Have problems with fine motor control & using both hands (more left than right - have a contracture). I fall frequently & 17 months ago it became unsafe for me to live alone & I moved in with my mom.

I have a hand controlled van with a wheelchair lift that I can use on my "good days" but I never travel far & because of light sensitivity (head lights) I rarely drive at night.

I depend on my laptop for everything my handwriting is illegible. I have a home health aide to help with "the basics" & with cleaning my area 49 hours per week. I have a small service dog that alerts to my diabetes but also knows some mobility tasks as well.

I am trying for form a nonprofit corporation to help adults with physical disabilities and should have all the pieces in place before I turn 50 at the end of November.

The way it works is I do what I can when I can & just accept that some days I can do little or nothing.

[kicker]

Wheelchair Kamakaze, who also has PPMS, says in his blog "It's the red-headed step-child of an orphan disease".
Being a red-headed orphan stepchild myself, I get it.