Nina

Just loved reading Rick‘s funny and insightful columns. He will be missed.

I have to agree with you, Duane. For those of us who are in the late stages of ALS it’s hard to cheer for anything treatment that will prolong our lives. I hope that those of you who are in earlier stages and are doing the research will find the right path for you and help future pals live longer and better lives.

Len, this is such a useful post. So much great information. I have a couple of questions that I hope you can take time to answer. One is – what is a motorized chair lift? I have no strength in my legs and wondered if I could use such a thing.I think I know what it is and it would not be usable for me.

The second question is about your PWC. I am i…[Read more]

I don’t have pain associated with my ALS but I do have a condition called trigeminal neuralgia and I have been reading about the use of ketamine to treat it. It’s supposed to be good for all neurological disorders. But it is a hallucinogen which scares me . Has anyone used it? Or even researched it?

I would also be interested in the effectiveness of an overhead rail system. What does it accomplish that a Hoyer lift can’t do? Assuming you have room for a Hoyer lift, which we do.

Has there been a trial on this compound? Does it have good results?

I love my sketchers! I’m in a wheelchair so I don’t walk in them but they slip on and off so easily and they don’t look too shabby with pants.

I’m eager to hear at the adaptive clothing zoom meeting what they suggest for pants to wear in the lift that are removable for going to the bathroom. I’ve only seen one possible solution to this prob…[Read more]

Lisa covered a lot of what I would say. I also have limbar ALS and was able to convert our living room to a bedroom in order to stay on the first floor. We had a ramp built and we’re lucky to have wide doorways and nice hardwood floors in our old Victorian home. The big expense was the bathroom. We added a roll in shower and sink and vanity that w…[Read more]

I really admire all of you.  So far, I have not lost my voice but I’m guessing that’s ahead. It worries and depresses me that I will have to adapt to all the equipment/software  you are talking about. I  just don’t feel like I’ll be able to do it. You all inspire me.

That is so moving. Your love for your twin is evident.

Lake Meri,, I am having trouble transferring to the commode. My motorized chair, which I prefer to use, is too high and too wide to make the transfer. I can’t get it close enough to the commode. Now I am transferring from my motorized chair to the manual chair every time I have to use the bathroom. Tiresome and tedious. I guess I will consider M…[Read more]

Dear Jim, thank you so much for your advice about transfers even though it is difficult to realize there are no easy answers. The time may have come for me to start using mechanical devices. It’s hard to accept. I’m not ready!

Thank you Patty. It sounds like you are in the same place I am. We have a Hoyer lift but we don’t use it because it’s kind of scary. We also have a transfer belt which we should be using. We do use a sliding board for one of our transfers. In the meantime we are trying to refine our positioning and technique and see if we can continue tra…[Read more]

There’s lots of good ideas here. I have poor circulation and DVT so I use compression socks often. I found socks that zip up and it makes it much easier to put them on.

I am exactly where you are Cindy. I am wishing now that I was not a slow progresser! I try to focus on what I am thankful for and to keep staying in contact with friends and family. They uplift me.