Nina
Forum Replies Created
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I didn’t realize how much traveling you could do even once you’re in a wheelchair. I took advantage of the time that I could and went to see all my friends and family that were out of town and I’m so glad I did that but I could have traveled more once I was in a wheelchair. I feel like I gave up on traveling much too early.
Having read all these comments, I am so glad that I did voice bank early on. I didn’t think it was necessary, but my sister insisted. I am still am not needing it but I am grateful I have done it.it might be too negative a subject, but it would be interesting to find out what other people wasted their time and money on. I would have a lot of comments on that!
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To all the ladies reading this – I have been doing some research on the Purewick external catheter. You put the wick into place between your legs and it vacuums up the urine when you urinate. I’m just not sure how difficult it is to position the wick, and whether you can do that yourself without assistance. Also, what success have you had in motoring outside the house with the Purwick container? Thanks!
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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 preference of having no interventions and agrees it is the best and most natural way to go. He has help me understand what it means to have no interventions. If any of you are using palliative care I suggest discussing it with your counselor there. Very helpful for me. Good luck to all of you and making these very difficult decisions.
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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 degenerated the transfer board just became too unstable. We then went to the Hoyer Lift and I have had only one fall, off the toilet. The Hoyer Lift is very useful for picking me up off the floor. Thankfully, we do have enough room to maneuver it when we have needed it .
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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 a Hoyer lift in some hotel rooms but not in a gas station or rest area bathroom or most overnight accommodations. There must be some way to do a transfer from my motorized wheelchair into a normal accessible bathroom. Very frustrated! This small thing keeps me from traveling. Please help!
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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, does the rotation therapy promised by the Hill Com Sport bed really work? Will it allow enough turning at night to keep my backside off the bed? Thanks all of you for contributing to this valuable thread.
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Just loved reading Rick‘s funny and insightful columns. He will be missed.
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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 interested in whether I would be able to stand and sleep in a chair. Do you think you could post pictures of both of these? I realize you don’t have the chair lift but maybe you could post the link to what you looked at in the show room. It would also be great if you could post a picture of you in standing position in the power chair.
I have some arm strength but absolutely no strength in my legs and it’s making all these aids pretty unusable. But there’s always hope that I will find a solution!
I would really love to find some respite but most of the nursing homes I’ve talked to want me to stay for a month or so.
Like I said, I really appreciate your post. I can see that I am behind on my research and you have inspired me! Hope you continue to find tools to stay self-sufficient. Best, Nina
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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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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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Has there been a trial on this compound? Does it have good results?
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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 problem and it’s pretty weird! But as we know, modesty goes out the window when you’re ill.
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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 was accessible for me. The only advice I would have there if you are remodeling your bathroom do not skimp on space. The ADA provides information about the circumference needed for a wheelchair to turn. Make sure you allow that much space.
I regret not doing more in the kitchen. I know you can add pulldown shelves and lower the sink and stove but since my husband is now on kitchen duty I didn’t want to make it uncomfortable for him. I try to keep things I need on lower shelves.
Most everything in our house works well with the manual chair. But my power chair is a different story. It does almost no good in the bathroom because I can’t transfer from it to the commode. So that is something to consider.
Best wishes to you!
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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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That is so moving. Your love for your twin is evident.
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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 Mary‘s option of using a bedside commode but again I don’t think I’ll be able to transfer to my motorized chair. Next step is the dreaded Hoyer lift.
But what I’m really looking for is a way to transfer from my higher motorized chair to a standard commode. Thank you so much for your suggestions!
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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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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 transferring as we are.
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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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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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Lisa, I agree with Kathy’s comment. I think you should see another doctor ASAP and ask for an EMG. They can diagnose you with “probable ALS,” which I had for almost a year. I even had a specialist at Emory tell me I didn’t have ALS. And it was about a year and a half in that I was finally diagnosed with ALS. Not that I really wanted to hear that but it helped to have som definition of what was going on.
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It seems I have gotten many links over the years to studies that claim to be “breakthroughs.” We have no choice but to be hopeful. ?
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I heard that L-serine was used by some natives of Peru or someplace and they never had a single neurological disorder and so the people researching the natives developed it as a antidote for a range of neurological disorders. I took it for almost 2 years with little negligible effect and then I read that it can cause intestinal issues and I think I experienced a little bit of that so I quit. I still have about a half a bag if you want it…
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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 any 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.