Recent content by SueG

Hi! Still a pt at MGH Clinic, tho did March appt by phone. Had a severe reaction to the openn label dex (was on placebo, later found)-- my white cell count went to zero, earning me an ambulance ride to MGH for a 2-wk stay in December. I was one sick puppy. Better now, but lost a lot of ground...

Hi Helen! Miss you, so much effort to communicate. National Library Service , you can g o o g l e that for link How are you? I'm ok, on fb Moore than here. Love, Sue

Been leasing Tobii for a month". (Still use IPad with headstick mostly, like now.) getting better at basic typing w it, but very frustrated w fb and email". Built-in apps foor both are useless, so I have to use browser. Requires very fine control, mostly unsuccessful. Is anyone having more luck...

Love to you too. Recently back from two wks hospital , dex complications. Weak but keeping in light. Hope!

Let us know what you think, or if you find other books you recommend!

Hi Darryl, Three books I've found worthwhile;: No Death, No Fear. by Thich Naht Hanh Enjoy Every Sandwich. by Lee Lipsenthal Awakening Joy. by James Baraz Different books work for different folks-- good luck! Sue

Hi, thanks for your note. I'm afraid I don't have details on how my two bulbar friends died. Certainly aspiration is a concern. I can still drink, small sips carefully, but cant chew because my tongue is useless. Good luck with your mom, and thanks (from another mom) for being there for her!

Notme, dexpramipexole is a new drug specifically for ALS. Sharon, hope you've gotten good news!

I've had two friends with bulbar onset die while retaining mobility in their arms and legs. Progression is so variable. Enjoy doing what you can, while you can. And then find new ways to enjoy things! Good luck, Sue

Sharon, my first post was before I saw the good news from your neuro. Now im editing it. Yay! All, please note that nobody in the trial ( including me) knows whether or not they are on placebo or dexpramipexole. Of course we can suspect one way or the other! Some days I think I'm on placebo...

Oh yes, Kimberly, we are well acquainted with that switch! Gets knocked by accident all the time!

I love my head array! But yes stay ahead- mine was spec'd at first with joystick and we had to stop the process in mid order (I.e. after 3 months!) to get it spec'd with head array. If your hands are going, skip the joystick. Good luck!

Re: Alternative therapies/medicines/supplements Hi Wings, I understand your search for hope, and also believe that positivity is crucial, but the reason you find no threads on alternatives that reliably slow progression is because there unfortunately aren't any yet. It's such a frustratingly...

Dexpramipexole is an entiaomer (simply: a different structure) of Pramipexole, a drug used to treat Parkinson's. You may be thinking of Dextromethorpam, which is in cough syrup, and which is combined with a heart med to make Nuedexta - this is used to treat Emotional Lability in ALS. (cred: I'm...

Perfect Fit line of knit pants from L L B e a n are my standby. Several waist styles, don't look like sweatpants. Only wish they came in more colors! Very comfy and hold up well. Right now I'm in the capri-length navy ones.