[SallyC]

That is so nice, that your DH works at home and can be there for you, in an emergency and just for comfort. God Bless Him. Hugs for you both.

[agate]

I wonder if it would work if you started getting ready for your nap before you start nodding off? If the nodding off generally happens about 3 PM, maybe you could have your DH transfer you to the recliner at about 2:30, and you'd ease into the nod-off phase while you're already in the recliner.

Or maybe you're just not used to sleeping in the recliner? If so, could you rig up your wheelchair so you could nap in it--as you apparently are doing, but making yourself more comfortable so your head is supported better, for instance?

Just a thought.... I'm sold on the idea of getting enough sleep.

[Judy2]

Hi Astair G..........Welcome to NT. I just had to reply to your post about nodding off in your powerchair but not being able to sleep if you go to the trouble of getting into your recliner since it sounds just like me. Seems like the fatigue kicks in when doing usual "stuff" around the house since I'm alone, and before I realize it, I'm waking up stiff, sore and freezing. However, it's usually difficult to sleep regular hours and go for a couple days/nights without sleeping. I'm sorry you seem to have the same schedule, but glad to know I'm not alone.

BTW -- your hubby sounds like a real keeper!

[AstaireGal]

Originally Posted by SallyC

That is so nice, that your DH works at home and can be there for you, in an emergency and just for comfort. God Bless Him. Hugs for you both.

My DH may not have the most fulfilling or high-paying job in the world; but we both know how lucky we are that his company started allowing a few people to work from home 4 years ago; and he applied and was given permission. There would be no way for me to be here alone for the 11 hours (8 working hours plus commuting time) it would be if he had to go into the office every day.

[AstaireGal]

Originally Posted by agate

I wonder if it would work if you started getting ready for your nap before you start nodding off? If the nodding off generally happens about 3 PM, maybe you could have your DH transfer you to the recliner at about 2:30, and you'd ease into the nod-off phase while you're already in the recliner.

Or maybe you're just not used to sleeping in the recliner? If so, could you rig up your wheelchair so you could nap in it--as you apparently are doing, but making yourself more comfortable so your head is supported better, for instance?

Just a thought.... I'm sold on the idea of getting enough sleep.

I'm too stubborn, I'll admit it. I like to stay in my power chair and be able to get things done during the day; so, I think I'll go with your second thought

[kicker]

I am in a powerchair 24/7 and my crossed wrench warning, warning symbol started flashing. Then the chair didn't go at all. DH was not far away and put me into push mode and pushed. But what if I'd been alone?! I called the rehab-fix place and they understood I was not cauterized, self-toileted but if I got stuck alone really bad things could happen. They said they could come tomorrow or day after. What!!!!! I smacked the folding arm with joystick into place, rebooted and as I told DH, "fixed it". But what if it didn't work? I have resources, what if I didn't? Being Handicapped is scary. Guy who came to help from rehab. found nothing he could do. He called chair maker and got advice neither of us found valid.

I always have a cell phone in my chair bag. And a whistle if needed.

[bill3901]

I wanted to introduce myself, Im a 43 yo man with PPMS

I was dx in 97 and just started noticing symptoms in the fall of 96. Since then I have been in a nice slow steady decline. Every year more function is gone. Not really walking anymore, not for any distance anyway.
Seeing a new Neuro next month. Of course I'm not expecting much, Oh well. This does suck!

[SallyC]

Hi Bill, welcome to NeuroTalk. So sorry for your DX of PPMS. We have some wonderful members here who have your DX and I hope they speak up and compare notes with you.

I am SPMS, but this late in the game, for me, there is little difference in the two. After some 45 yrs with symptoms of MS, I'm pretty much done walking too.

Come on in and join us at the Stumble Inn, where we are a little less sicky and a bit more ourselves. Or join us where ever you wish.

We are here for you and us.

[Judy2]

Hi Bill and welcome to the group! So sorry you have to be here too, but you'll find many supportive fellow MSers and lots of love.

[KittyLady]

Sally, I have a question for you. Your the only SPMSer I can think of right now and you always give such great advice. But anyone with SPMS can chime in too. I'll take advice from anyone Im now on year 20 with MS, and am wondering how you know when you've gone from RRMS to SPMS? Ive always recoved completely from my flares, but now Im not. I can no longer walk alone, I have to use a cane or walker, I can no longer walk long distances like thru the grocery store, I have to use a motor cart. Im constantly dizzy, that never goes away. Spasticity is a constant unwanted companion. It use to be the only time I got dizzy was when a flare was coming, now its constant. I have also developed foot drop in my right foot. I could go on, but you get the jist. I asked the neuro if Im now SPMS, and he said no in the same breath as he was trying to push tysabri down my throat. I know neuro's are hesitant to label SPMS/PPMS due to insurance reasons. Im just getting nervous now.