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Nina replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 1 month, 2 weeks ago
Just loved reading Rick‘s funny and insightful columns. He will be missed.
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Susan and
Nina are now friends 3 months, 1 week ago
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Nina started the topic ADAPTS transfer sling in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 months, 2 weeks ago
I have recently seen reference online to ADAPTS transfer slings. They were originally designed for emergency evaluations from airplanes and burning buildings etc. but can be used for more every day uses like transfers to dental chairs and swimming pools. It’s basically a padded sheet with four handles. The videos make it look like it’s pret…[Read more]
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Nina replied to the topic What's the latest news on AMX0035? in the forum Research Topics 4 months, 1 week ago
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.
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Nina replied to the topic Modifying your Home in the forum Living With ALS 5 months, 3 weeks ago
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]
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Nina replied to the topic Pain management and ALS in the forum A Forum for ALS Caregivers 8 months, 1 week ago
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?
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Nina replied to the topic Modifying your Home in the forum Living With ALS 8 months, 1 week ago
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.
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Nina replied to the topic Sodium phenylbutyrate powder in the forum Living With ALS 9 months ago
Has there been a trial on this compound? Does it have good results?
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Nina replied to the topic Dressed with Success: Adaptive Clothing for Living with ALS in the forum Living With ALS 9 months, 1 week ago
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]
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Nina replied to the topic Modifying your Home in the forum Living With ALS 9 months, 2 weeks ago
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]
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Nina replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 9 months, 2 weeks ago
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.
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Nina replied to the topic In Loving Memory of my twin who last her fight with ALS in 2020. in the forum In Loving Memory 9 months, 4 weeks ago
That is so moving. Your love for your twin is evident.
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Nina replied to the topic Share your tips for dealing with embarassing "bathroom" topics in the forum Living With ALS 10 months ago
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]
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Kathryn F. Kennedy and
Nina are now friends 1 year, 1 month ago
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Nina replied to the topic Help with difficult transfers in the forum Living With ALS 1 year, 1 month ago
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!
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Nina replied to the topic Help with difficult transfers in the forum Living With ALS 1 year, 1 month ago
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]
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Nina started the topic Help with difficult transfers in the forum Living With ALS 1 year, 2 months ago
I have limbic ALS and have lost almost all use of my legs. Now I’m losing abdominal strength. My husband has been helping me with transfers but some of them are getting very difficult. He’s 72 with a bad back. I wonder how other caretakers and pALS have dealt with this. Hoyer lift? More time in bed? Any other ideas?
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Nina started the topic Ayahuasca or micro dosing for ALS in the forum Living With ALS 1 year, 4 months ago
Has anyone experimented with hallucinogens for coping with ALS? Writer Michael Pollen has discussed it quite a bit and I recently saw this article about it. I am moderately interested but would love to hear about anyone else’s e…[Read more]
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Nina replied to the topic cold and swollen feet in the forum Living With ALS 1 year, 4 months ago
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.
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Nina replied to the topic Keeping a positive Attitude in the forum Living With ALS 1 year, 5 months ago
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.
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