hello! my sleep is better, but not perfect. we werent happy with the mattress we got so we sent it back and were buying another one. i believe the low pressure alternating low loss air mattress is the way to go for me. i know someone who goes to uofm. most people i know go to henry ford in detroit. have you been in contact with alsa in troy? what about als of michigan? have you heard of the freedom lift (its only offered in michigan)?
When both PALS and CALS are not sleeping well, life becomes even more difficult than it already is. We were both miserable. We are now over a year later and Darcey continues to sleep like a baby. The Gabapentin she takes seems to have helped with her heel flares (they are now rare). I wake her once in the middle of the night to lean her forward (from the waist) to stretch her back (otherwise her back hurts in the AM from no movement). Other than that, she either wakes on her own after 8-9 hours of sleep or when I wake her to start the work day during the week.
Let me know if you have any particular questions... and please feel free to add me on Facebook where I'm also easily accessible - https://www.facebook.com/jim.bird.77. Thanks for reaching out!
I'll first direct you to an older thread that I created - http://www.alsforums.com/forum/current-caregivers-cals/25987-sleeping-conundrum.html. In this thread, I begin to discuss the sleep issues that we'd been experiencing and the process that we went through to find solutions. You may find several useful things buried within there. On post #82, you'll see we finally made it to the air mattress. Life changed considerably with the addition of that mattress.
The mattress replaces the original mattress on Darcey's hospital bed. It is called a Low Pressure Alternating Low Loss air mattress. I've seen them priced from a couple hundred dollars to over $1,000. Ours was courtesy of our local ALS Loaner Closet. That would be my first recommendation for locating one at no cost.
Mobility vans are NOT cheap, as you have noticed. I therefore recommend getting a used one, like I did. Unfortunately, I think there's a high turnover rate from people passing away. Yikes!
I would start by putting all your friends, relatives and acquaintances on notice that you need one. Mine came through a friend who went to church with a woman who's husband had recently passed away. It was only one year old and had under 9000 miles on it. All garage kept. I saw the receipts and the new van plus conversion cost $55k. I paid $34k. I know that's still a lot but not very far out of line from a new car. You can get older ones with more miles cheaper, but it was a good deal for me. I highly recommend finding one from a private owner to avoid the dealer mark up. Try to find a little old lady who only drove it to church on Sundays, like I did! Lol! I've read the two big players in van conversions are BraunAbility and VMI. Mine is VMI
I'm hearing you Deb. I'm not claustrophobic but I definitely keep my eyes shut for the whole time when having an MRI.
Sometimes I know I just do whatever the doctors say, I don't question why, nor do I question why I need to see yet another doctor when they refer me on. Habits I had better improve on.
Please keep me posted how you get on. I wonder if this MRI is for your benefit...or hers??
God bless, Janelle x
Not a difficult conversation, I'm at peace with the diagnosis. Took awhile to get there, but with the help of wife, family and support system I'm ready for the fight and long trip ahead. Yea, I kind of knew I was advancing to ALS. You still have a clean EMG, that's good, I won't worry till that comes back with some dirt on it.
My tale is close to the same as yours, I have emotional issues, my left leg is weaker with loss of calf muscle. Were we differ is my progress is still very slow and have a lot of spascity, off the charts and almost non-stop Fasc's. The thing that nailed it for me was the EMG that showed ALS, all the ones before that had been clean. I do think that the transition from PLS to ALS is rare. If I was you the next time you see your Doc, I'd ask for EMG. That will give you a answer.