Recent content by Texas Quilter

I have seen very long bed pillows. The kind you snuggle up to. I wonder if that would work & be more comfortable. Perhaps use that & the wedge behind it

Does anyone go here & have some information on their experience? I'm thinking of switching (maybe next year). Thanks!

My ALS Clinic in Houston said it only extended life by about 3 months. It made me nauseous so after a few months I stopped taking it.

My ALS clinic in Houston said yes to the vaccine. I got my first dose - Moderna - 4 days ago. Really sore arm for a couple of days and a headache but that's it. Hope that its effective!

Steve - thanks for your encouragement and advice. I've been concerned that the time to get a chair might be delayed due to Covid. I got my scooter from Mobility Solutions here in Amarillo and think they are great people. I think NuMotion is the DME that usually works with the Houston ALS...

Thanks Kim!

Thank you Laurie. I've thought about Albuquerque . My neurologist here sent me to the Houston clinic originally - he has a good relationship with Dr Appel there. I've asked them about Albuquerque and Dr Appel said the doctors there are excellent. I might make the switch. The info you sent...

I know I'm going to need a power chair - and that time is getting closer. I can still walk around my apartment, but some days not so good. My ALS Clinic has said that I will need to come there to be evaluated for need & qualification (Medicare). Its 700 miles away and I don't think I can...

I have a lot of let pain. Mostly muscle aches. Sometimes in my neck, which is weak. I can still walk but if I walk more than 1500 steps a day I really pay for it with pain in my legs. I do think its exertion related and this pain has been going on since a couple of years after diagnosis...

Have been taking it for quite a while. No side effects that I have noticed - other than it helped with speech & chewing/swallowing

The National ALS Registry is collecting all types of data from patients. They have very extensive surveys - which you don't have to do all at once. the site is cdc dot gov forward slash als. It is the only illness registry mandated by Congress (you're not "mandated" to participate, but the...

My clinic always tells us not to lose any weight. I had lost 8 pounds and they immediately wanted to know why -- i.e. was it deliberate or was there a problem. The dietician told me that when you lose weight, you are losing good muscle cells along with the fat cells. Dianne

For our cruise, we've used Allianz. They cover all pre-existing conditions. Don't know if that's available to you in Canada or not; I get it through my travel agent. Dianne

Definitely get an accessible cabin, unfortunately there are not a lot of them, so they sell out way in advance. I've been on Royal Caribbean twice - one good experience and one horrible - and Norwegian 3 times. Norwegian seems to have better shows. I would recommend that you rent a scooter...

For cruising I'd recommend a scooter (I've tried both a wheelchair & scooter rentals). The scooter gives you more independence -- I can go somewhere my husband doesn't want to, or if he's napping, etc. etc. We found that sometimes its difficult to push a wheelchair over the carpeting on the...