Recent content by jellis86

Hello everyone, having passed 4 years since onset, and two years with mechanical ventilation and almost completely paralyzed, I've had some strange occurrences . Firstly, both arms including hands and fingers, are paralyzed, except for my left thumb, it moves freely. But In January, of this...

How awful for you and your family, i can't imagine the torn feelings. I have heard lots of rumours since being diagnosed 2-14-2013. My progression seemed to be slow, only speech and swallowing. After 18 months it became agressiveBeen on a vent for a year

I'm bulbar onset, started with slurred speech then swallowing. My tongue can still move but can't extend it past my lips. Feeding tube since May, 2013 and have been using a bipap at night since diagnosis. Once in a while I'll use it during the day, especially when being fed through tube. I...

I had my first trip to the ER due to ALS. I slept in my power chair at my computer Sunday night, December 21....this might sound strange, but I became trapped in my Power Wheelchair. My left arm slid off the arm of the chair. Since that arm is so weak I couldn't pull it back up. So I shifted...

I'm the same way Greybeard.....I go into slight panic mode when I lay down until I get that first rush of air from my bipap. Same thing when I get up, do not remove my bipap until i'm sitting. My last FVC was 49%, but not a good seal... also when they plug my nose, my breathing gets raspy due...

My PVA rep started the process on a Monday, approved paperwork 1 week later, owned Van on Friday. Total of 12 days. My PVA rep rocks! She also got me the highest $...R2

hugging my wife... kissing my wife properly.... Building and upgrading computers...... working on our vehicles.... changing DVDs by myself... gardening... yard work... driving ... feeding myself ... eating whatever ... getting out of bed on my own... going in my basement workshop...

Love my dogs, but if i got on the floor with them, I'd be there for good...lol

I have a great ALS team at the Minneapolis VAMC...However they know very little about the DPS. The only response i get is, that's not recommended for PALS....of course we all know that's bull! I might have to "step out" on them and flirt with my old Mayo Clinic team. I think I'd be a good...

A PALS friend has been on hospice since 2010...she still lives at home. She also goes on respite a few times a year. From what she was told, PALS don't have to follow the six month hospice limit because ALS is progressive with a bleak outlook.

I have taken since diagnosis. No way to know how effective it is. I am bulbar onset and so far still breathing okay. My understanding is it adds a few months before needing invasive respiratory assistance. I commend adozi on her post/s!

I am bulbar onset, first diagnosis was in Oct. 2012. Reaffirmed by the same neuro in Jan, 2013 and 2nd opinion affirmation in Feb., 2013 at Mayo Clinic. My symptoms started with my speech and slight swallowing issues. Bipap at night since Mar of 2013. Feeding tube in May of 2013 but I still...

Tillie, I am so sorry about your loss....I do not post here much because typing is becoming very difficult. But my thoughts and prayers are with you.

U.S. Food and Drug Administration Approves Start of BrainStorm Stem Cell Trial for People with ALS - The ALS Association New hope for treating ALS | Harvard Gazette All ongoing, haven't heard anything about a new treatment being approved for anytime soon.

To Absent Friends: A Collection of Stories of the Dogs We Miss: Jameson Parker: 0709786007929: Amazon.com: Books