This disease is so frustrating. My mother was diagnosed with PLS, symptoms started a little less than 3 years ago. She is falling more regularly now. Three falls in the past two weeks. Trouble swallowing pills, more confusion, trouble raising her arms, and hoarse voice. She is resisting a wheelchair full time, or any help. She uses a wheelchair if it’s more than 20 feet. But now can’t even go that distance. It feels fast, but the doctor says this is still really slow? Does this sound right?
More rapid progression?
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It's fast for most PLS, but if she's getting the benefits that she would for ALS, not sure there's a point to another EMG. But if a dx of ALS would help her in some way, then I would ask about it.
Not knowing what muscles are weak, a rollator might help avoid falls if she is resisting full-time wheelchair use. If she has difficulty swallowing, of course, I would discuss a feeding tube and her wishes overall.
Not knowing what muscles are weak, a rollator might help avoid falls if she is resisting full-time wheelchair use. If she has difficulty swallowing, of course, I would discuss a feeding tube and her wishes overall.
She is currently using a rollator around her home. That’s when she’s falling. She’s being encouraged to get a custom made wheelchair for full time use. She has an air hawk now for anything outside of her apartment. I think for her the ALS dx is more psychological, knowing she doesn’t have to do this for 10+ years. But I guess if we’re being honest we already kind of know that. She asks a lot how long she has to do this and it’s very sad.
Nikki J
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You said in the cals section she lives in a continuing care residence. If she injures herself in a fall she might end up in a higher level of care. If they are having to pick her up frequently that might happen too. I suspect she wants to stay in her current place as long as she can And as I think I said before using the wheelchair more will preserve her independence to transfer longer. I understand wanting it over but I think for most of us PALS what we want most in the least possible time fully dependent
Yes we are definitely trying to preserve her independence as much as possible. She wants to live alone. I’ve explained that a wheelchair will help preserve the ability to do that. She currently has two black eyes and big gash in her head from falls so I think the facility is aware. I’m hoping to get the social worker from the clinic more involved. Maybe someone else can explain it in a way that makes sense to her or maybe it will feel better coming from a professional. I want her to stay in the independent living as long as she can. I just worry with the injuries escalating.
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If she is in a facility where she has to be in one level of care or the other, and she wants to stay in IL, she may be able to have part-time help that you or the facility source.
In some facilities, you can pay a la carte for AL aides' services for bathing, eating assistance, etc. morning and night, say, while staying in your IL unit or room, if you can get around by yourself the rest of the day. I don't know the rules wherever she is.
But with two black eyes and a gash in her head, if you/she is thinking she can go on as she has been and not risk serious injury/death/malnutrition/dehydration and all the rest, you're kidding yourself. Under some contracts, the facility can move her to AL without her consent -- I'd be aware of this, stay ahead of the curve, and don't let things get to that point.
In my experience, nurses and social workers are seldom able to break through serious denial by themselves. Does she have friends at the facility? Have you yourself had a frank convo with her about what happens if she falls hard and spends the rest of her life in bed, in pain or a coma?
In some facilities, you can pay a la carte for AL aides' services for bathing, eating assistance, etc. morning and night, say, while staying in your IL unit or room, if you can get around by yourself the rest of the day. I don't know the rules wherever she is.
But with two black eyes and a gash in her head, if you/she is thinking she can go on as she has been and not risk serious injury/death/malnutrition/dehydration and all the rest, you're kidding yourself. Under some contracts, the facility can move her to AL without her consent -- I'd be aware of this, stay ahead of the curve, and don't let things get to that point.
In my experience, nurses and social workers are seldom able to break through serious denial by themselves. Does she have friends at the facility? Have you yourself had a frank convo with her about what happens if she falls hard and spends the rest of her life in bed, in pain or a coma?
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Yes I am aware and very concerned. I have been trying to hold off using power of attorney as long as possible, and maintain her decision making ability. I agree we are getting towards the end of when that will be possible if she can’t accept more help. Getting her into the facility was a year long ordeal and I’m so glad she’s there! Can anyone explain what the process of enacting POA looks like in a situation like this? What are the steps? How long does it typically take? What should I be aware of?
swalker
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Before getting a wheelchair I had several falls, collectively resulting an a badly sprained ankle, a broken toe, and a broken elbow.
We really don't want to fall, because the injuries from falling can complicate and already complicated medical condition.
I was more resistant than most to getting a wheelchair. My doctor recommended I get one, and I thought "no way". I procrastinated for over a year before I made an appointment to check out wheelchairs. The morning of the appointment, I almost cancelled it, as I really did not want or see the need for a wheelchair (I am a bit dense!).
The wheelchair place had over a dozen wheelchairs for me to try. The person I was working with knew how to get me to want a wheelchair. She sat me in a specific wheelchair and then moved out of my line of sight. Without a wheelchair, repositioning myself to see her was doable, but required a surprising amount of effort. With the wheelchair I was sitting in, I simply moved the joystick until she was back in my line of sight.
That was the "ah ha" moment for me. I ordered a wheelchair that day, took deliver 4 months later, and now have a stable of 5 wheelchairs.
I doubt I have ever been so wrong about anything in my life as my stubborn refusal to get a wheelchair for over a year.
I don't know how to convince others that wheelchairs are a vast positive rather than the negative I perceived them to be, but perhaps sharing my story can help.
Steve
We really don't want to fall, because the injuries from falling can complicate and already complicated medical condition.
I was more resistant than most to getting a wheelchair. My doctor recommended I get one, and I thought "no way". I procrastinated for over a year before I made an appointment to check out wheelchairs. The morning of the appointment, I almost cancelled it, as I really did not want or see the need for a wheelchair (I am a bit dense!).
The wheelchair place had over a dozen wheelchairs for me to try. The person I was working with knew how to get me to want a wheelchair. She sat me in a specific wheelchair and then moved out of my line of sight. Without a wheelchair, repositioning myself to see her was doable, but required a surprising amount of effort. With the wheelchair I was sitting in, I simply moved the joystick until she was back in my line of sight.
That was the "ah ha" moment for me. I ordered a wheelchair that day, took deliver 4 months later, and now have a stable of 5 wheelchairs.
I doubt I have ever been so wrong about anything in my life as my stubborn refusal to get a wheelchair for over a year.
I don't know how to convince others that wheelchairs are a vast positive rather than the negative I perceived them to be, but perhaps sharing my story can help.
Steve
Nikki J
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Steve that is so interesting. And your wheelchairs have surely helped you live such a full life!
I think wheelchairs and feeding tubes are 2 of the 4 things that improve quality of life ( the others being respiratory support and communication devices) yet are commonly resisted. Aside from the injury issue and the prolonging independence issue there is also the conserving energy issue which means she would feel better physically and have more energy for things she wants to do
I think wheelchairs and feeding tubes are 2 of the 4 things that improve quality of life ( the others being respiratory support and communication devices) yet are commonly resisted. Aside from the injury issue and the prolonging independence issue there is also the conserving energy issue which means she would feel better physically and have more energy for things she wants to do
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A custom one is like a lift chair on wheels. Everywhere she goes in it will be so much more comfortable than an Air Hawk. I have a Matrix (very similar to Air Hawk) but my custom PWC supports my back, legs, neck and arms. I sink into the ROHO cushion. The elevator function is wonderful and can bring her up to eye level with people she's talking with.
I do hope she decides to get one.
I do hope she decides to get one.
monique92760
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I was diagnosed with ALS last August 3rd. I only had a mild foot drop issue of my right foot. Both of my legs and some core stomach muscles and lower back muscles are now useless. Everyone's journey is different. I am thankful I purchased a power wheelchair early on because it kept my days purposeful which is the positive energy one needs to deal with this crappy disease. Try to stress to her the CONSERVATION of energy a chair offers.
Thank you for this advice. I worry that I will get a call saying she’s seriously hurt herself. But I also want to respect her wishes. It’s a tough place to be. She is sounding more positive about at least trying the power chair.
Her diagnosis has unfortunately been changed to ALS. I’m not sure it changes much, but it makes me feel less crazy watching the decline and feeling like it’s been dramatic. Any advice on how to prepare once swallowing and voice start to be impacted? She is in early stages with a lot of coughing and clearing her throat. She has medical directives that say no supplemental nutrition, or ventilation of any kind. I’m hoping those decisions are still years away. But I know timing is something no one can predict.
