Nina

Thank you for all these thoughts. More of you want to have no interventions than I would have thought. When I see Steve Gleeson with all with all his devices and interventions I think that is not for me, as much as I admire and appreciate him.

I have a palliative care counselor who has been very helpful on this issue. He is supportive of my…[Read more]

Thank you, Mary. I was told by a local fire fighter with that you cannot call EMS for a fall without going to the emergency room to get checked for injuries. I am happy to know you can call for a”lift assist.” We had many falls (no injuries)  while I was trying to transfer from-chair or bed to wheelchair to commode via transfer board. As my core…[Read more]

Hello all – I have limbic ALS and now have no use of my legs. I use a Hoyer lift and a motorized wheelchair. I am very frustrated that I can’t travel because of the inaccessibility of public bathrooms. The “accessible bathrooms” work for a manual wheelchair but my motorized wheelchair is just too big to get close enough to the toilet. I can use…[Read more]

Thanks everyone for all this valuable information. I am paralyzed from the waist down and have a hospital bed that allows me to raise my head and my legs.  But I sleep all night on my back . No bedsores so far but my OT is worried. He thinks I need to be rolled from side to side at night but I wondered if Len’s bed is another solution. Len, do…[Read more]

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]