My wife was diagnosed with ALS 2 years ago. It has been rather slow in progressing. She was using power scooters and going to move to a power wheelchair. We just got a hospital bed and are considering a Hoyer lift. Does anyone have any advice? We always seem to be behind the curve. She is basically a paraplegic at this point.
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Diane H
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Check here for info on choosing a lift and how to get through the process and paperwork of getting the right power chair for you, for now, and for down the line.
ALS: From Both Sides
ALS: From Both Sides
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Ron,
There is also an equipment sticky and many good threads (see Search link in reverse type near top of every page) on lifts and power wheelchairs. I hope your wife continues her slow progression.
There is also an equipment sticky and many good threads (see Search link in reverse type near top of every page) on lifts and power wheelchairs. I hope your wife continues her slow progression.
krnNdug
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Ron,
Sorry you are here. You should check with the local ALSA or MDA chapter. We had a home visit and they suggested items we never would have thought of and then they provided them from the loan closet. They lent us a ramp, rolling toilet/shower chair, bedside grab bar, toilet grab bar and last and definitely not least a bidet! They also made suggestions on what we can do, should do and will need to do regarding our living space. Granted, we knew much of this but it was very helpful having another set of eyes. They also have lent tobii and dynavox systems.
Doug
Sorry you are here. You should check with the local ALSA or MDA chapter. We had a home visit and they suggested items we never would have thought of and then they provided them from the loan closet. They lent us a ramp, rolling toilet/shower chair, bedside grab bar, toilet grab bar and last and definitely not least a bidet! They also made suggestions on what we can do, should do and will need to do regarding our living space. Granted, we knew much of this but it was very helpful having another set of eyes. They also have lent tobii and dynavox systems.
Doug
Diane H
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A female urinal can be a standard, very inexpensive one but I recommend one that is spill proof. The brand I have is Spil-Pruf and is sold on Amazon. It comes in either clear or dark blue.
krnNdug/Diane H
Thank you. We have so many issues I don't know where to start. An als rep is coming here Wednesday. The last few days my wife has suffered from panic attacks and anxiety over going so often to the bathroom. Is this typical? Any suggestions on what to treat panic with?
Thank you. We have so many issues I don't know where to start. An als rep is coming here Wednesday. The last few days my wife has suffered from panic attacks and anxiety over going so often to the bathroom. Is this typical? Any suggestions on what to treat panic with?
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Hi Ron,
You might also check out the female UriBag for when you are out w/ her chair.
Our combined top recommendation on power chairs and lifts alike has been to measure the home and person, and understand the tradeoffs before ordering. For example, since your wife has had slow progression, a folding lift might be in order if you plan to travel. If you have acreage, she may need a rear or front-wheel drive chair; mid-wheel drive is normally recommended otherwise.
And in the case of the PWC, explore all avenues for funding the seat elevation feature, which some PALS have received insurance reimbursement for and others have not.
If she is heading into a power chair, you will also want to look into shower and commode chairs.
You might also check out the female UriBag for when you are out w/ her chair.
Our combined top recommendation on power chairs and lifts alike has been to measure the home and person, and understand the tradeoffs before ordering. For example, since your wife has had slow progression, a folding lift might be in order if you plan to travel. If you have acreage, she may need a rear or front-wheel drive chair; mid-wheel drive is normally recommended otherwise.
And in the case of the PWC, explore all avenues for funding the seat elevation feature, which some PALS have received insurance reimbursement for and others have not.
If she is heading into a power chair, you will also want to look into shower and commode chairs.
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Ron, this sounds like two issues, going often and panic about it. Urinary frequency can be a big problem for women, even without ALS. Has she addressed that problem with her doctor?
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Ron,
We've been using a sling/lift combination for some time. We elected to procure a lift that was portable as my wife still goes into work with me each day. It folds into an easy to transport package (or easy for us with our conversion van). We also purchase a sling that I still believe to be the very best thing that we've actually spent out-of-pocket money on. If it were to become damaged or lost I'd immediately purchase it again. I did write a review on it back in June. It was titled, "A Sling Like No Other". I'll post a link in the thread right behind this as it might go to moderation.
We use the sling daily for toileting, getting in and out of bed and for getting in and out of the reclining shower chair. I'm sure that we're well over a thousand sling events... and every time I have to use it, I'm thankful for finding this particular sling (Thanks again, Diane H!). The lift we purchased was the non-electric... and it really works quite well. I will admit, however, there are times when I wonder if it would have been worth the additional cost for the electric version. But then I'd have just another item that would have to be kept plugged in and charged.
For us, the change from scooter to power wheelchair (PWC) was difficult transition. We had the PWC before she really needed it... and for traveling, she preferred to drive the scooter up to the front passenger side of our van, be helped to a standing position and then into the seat. When she began having difficulty standing, even with help... and when she fell that first time and we couldn't get her back into the car, even with help (required an ambulance to get her home)... we looked into the conversion van. Once we had the van that we could drive her PWC into, it was like a whole new world opened up to her. Suddenly she wanted to go places again. One of the first places was to go shopping (something she'd not done for months). We went to Walmart and she was like a kid in a toy store. I think she spent over $500 that first time out.
The point is... with the right equipment, we really can get out and do things. With the portable hoyer, sling, conversion van and PWC, we can now take trips and stay away overnight. For us, the only limiting factor has been time between bathroom stops... but there are ways to extend even that or to minimize its impact. The right equipment makes such a difference. I don't fuss and fret when slinging her up... which makes her feel more comfortable and less imposing on my time. I think that is extremely important in the day-to-day of ALS.
I hope the two of you are able to find the tools that make this a much easier process. Keep asking questions... lots of wonderful people who are on this same ride and have some great advice...
Jim
We've been using a sling/lift combination for some time. We elected to procure a lift that was portable as my wife still goes into work with me each day. It folds into an easy to transport package (or easy for us with our conversion van). We also purchase a sling that I still believe to be the very best thing that we've actually spent out-of-pocket money on. If it were to become damaged or lost I'd immediately purchase it again. I did write a review on it back in June. It was titled, "A Sling Like No Other". I'll post a link in the thread right behind this as it might go to moderation.
We use the sling daily for toileting, getting in and out of bed and for getting in and out of the reclining shower chair. I'm sure that we're well over a thousand sling events... and every time I have to use it, I'm thankful for finding this particular sling (Thanks again, Diane H!). The lift we purchased was the non-electric... and it really works quite well. I will admit, however, there are times when I wonder if it would have been worth the additional cost for the electric version. But then I'd have just another item that would have to be kept plugged in and charged.
For us, the change from scooter to power wheelchair (PWC) was difficult transition. We had the PWC before she really needed it... and for traveling, she preferred to drive the scooter up to the front passenger side of our van, be helped to a standing position and then into the seat. When she began having difficulty standing, even with help... and when she fell that first time and we couldn't get her back into the car, even with help (required an ambulance to get her home)... we looked into the conversion van. Once we had the van that we could drive her PWC into, it was like a whole new world opened up to her. Suddenly she wanted to go places again. One of the first places was to go shopping (something she'd not done for months). We went to Walmart and she was like a kid in a toy store. I think she spent over $500 that first time out.
The point is... with the right equipment, we really can get out and do things. With the portable hoyer, sling, conversion van and PWC, we can now take trips and stay away overnight. For us, the only limiting factor has been time between bathroom stops... but there are ways to extend even that or to minimize its impact. The right equipment makes such a difference. I don't fuss and fret when slinging her up... which makes her feel more comfortable and less imposing on my time. I think that is extremely important in the day-to-day of ALS.
I hope the two of you are able to find the tools that make this a much easier process. Keep asking questions... lots of wonderful people who are on this same ride and have some great advice...
Jim
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The link to my review: https://www.alsforums.com/forum/tips-tricks-gadgets/25805-sling-like-no-other.html
Diane H
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Zoloft works great for me. I was having full blown, heart thudding, blood pressure soaring, breath gasping panic attacks over my breathing. Not as a result of actually being short of breath or congested -- simply from thinking about those things happening! A good call system helped but Zoloft was the solution. After being on it for just a couple of weeks I was relaxed and able to contribute to problem solving rather than freaking out. It also relieved a load of depression I hadn't believed I had! No more bursting into tears at every problem. That was a huge change in both my ability to cope as well as in my husband's. He was so frustrated and upset by my tears and panic attacks that we were both unecessarily stressed, angry, and miserable. I had no side effects from the Zoloft.
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I also used zoloft and was very happy with it - at first I was tired so I switched from taking it in the morning to at night. Before I felt like I was always silently screaming inside...
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