Question about current symptoms

[taminator]

Hello! I hope I'm posting in the correct place. My Mom was diagnosed in March with ALS. She's quickly progressed to the point she has only enough movement in her right hand to operate her chair. She can also move her feet just a very tiny bit. Basically she's almost complete total care and can't move her body.

Today she's complaining that her legs and arms are going to sleep. She's tried to reposition in her WC (it has all sorts of different functions to change her seating) but it's not working. She's also complained recently that her arms feel like they weigh a ton. She's had the muscle cramps many times but seems to be able to deal with those. She said if she calls the doctor to ask any questions he has to come for a house visit so I told her I'd check with y'all. If anyone has any insight it would be greatly appreciated.

She also gets horrible swelling in her extremities, even when she's been in bed. Not sure what that is from.

Mom has really taken a downhill turn rather quickly. She's starting to have trouble breathing and now sometimes when I call I can hardly understand what she says.

Thank you for any help.
Tammy

 

[rose]

Tammy,

I'm mainly just bumping this thread up, as I don't have anything specific to suggest for your mom. I'm so sorry her progression has sped up, of late. Just know this forum will do all it can to support you, and help you. It may take a while for enough of us to catch this, as its a weekend, and weekends are usually kind of slow.

good luck to you and your family.

 

[taminator]

Thank you so much. Mom has gone downhill so quickly it's shocking. All the doctors told us most ppl live 3-5 years after diagnosis. I don't understand how that's possible. She's getting to where she can't talk, trouble breathing, sleeping a lot, crying a lot, etc. Not to mention she has a hip that needed to be replaced b/c it's bone on bone, torn rotator cuff, and arthritis so she is in constant pain.

I get on the boards and read from time to time when I feel like I can handle it. I've actually learned a lot so thank you to everyone who takes the time to answer questions or talk about what they're going through. Needless to say, devastation is the current feeling for us all.

 

[abbas child]

Tammy, I know there are folks here with more wisdom, but I will tell you my thoughts. Does your mother have a hospital type bed that can raise her legs and her head? It's much more comfortable for me than the wheelchair most of the time, and an alternating air overlay on top of the mattress keeps or at least really helps to keep pressure points continually changing. The ALS association or the MDA in your area may well have loaner beds and also the alternating air overlay. You need to be in touch with them if you aren't already. I've had numbness when lying on my side. It became burning nerve pain before I learned to sleep only on my back. I think your mother probably really needs to change where her weight is pressing.

I think calling the doctor even if it's a house call would be wise. I would also ask about his ordering hospice. Please don't panic. Hospice now can help patients and caregivers without it being "the end" case situation. They would know a lot about how to make your mother more comfortable.. Another option is home nursing care, ordered by your doctor. Personally speaking, if I were your mother, I'd want Hospice, but I don't know your situation or wishes, of course.

I hope you continue to get advice and find help.

Ann

 

[taminator]

Thank you Ann! She does have a hospital type bed that she can raise and lower the head and feet. What type of air overlay do you have?
She had an air mattress in the hospital but it seems there were just so many issues with it. My step-dad spends most of the night trying to get her comfortable in bed. It's like every single little thing puts her in excrutiating pain. She can only lay on her back because of the hip and shoulder.

She has been approved for Medicare. We're contacting them about having someone come in and help my step-dad because he is taking care of her 24/7 and he's not in the best of health himself.

I will talk to her about hospice. I'm sure this will freak her out though. She is extremely anxious as it is now. But I'll try to explain their services (I'm familiar with hospice but didn't know they would come in early in a disease process).

Thank you again Ann so much. I wish I had something to contribute to the boards but this is so new and I live 2 hours from my mom it's hard to be there and have any info of value to anyone else.

 

[ZenArcher]

For her legs compression stockings would most likely help. I have the same issue with my feet and ankles swelling and they help. I'm betting they will help with them falling asleep as well but they are tough to get on, fair warning. Another thought is make sure the footrest on her chair isn't too low.

You posted about the mattress as I was writing this so I'll add I've reviewed the mattress. It is expensive and I think Medicare will only pay for that type if you have active sores but it's worth it. If not there is a ROHO mattress overlay. Also I use sleeping pills (Ambien) to knock me out and keep me out so my wife can get some sleep.

 

[abbas child]

Jeff's comment about the compression stocking is good, and I've used them, but I read about compression wrapping as being even better. Jeff, have you any information on that? Also, IrisMarie had her feet massaged for swelling. Start at the top of the swollen limb, pressing fluid upward slowly, and gradually work down toward the toes, always pressing up and away from the furthest point. This is said to work well but not to last, so getting her reclined and legs elevated higher than her hips ( I elevate legs higher than my head) is needed to follow the massaging.

My alternating air overlay is made by Invacare, and again, is a loaner from the ALSA. Jeff's system sounds a lot better, especially for serious pain. I have sheepfleece on mine which I lie directly on, Tammy. It helps with softening the air pockets as well as generally keeping skin from breaking down. A doctor's order for anything purchased may come in handy for reimbursement. Maybe talk with the doctor about Hospice and let it come to your mother from a professional would be easier? I'll send you whatever I can find in a PM and you can start looking.
Ann

 

[abbas child]

Tammy, look up "Ready Wrap" for wrapping legs, but I'll tell you it's expensive. I cannot send you a private message until you post I believe ten times, so go ahead and post, and I'll be back.

 

[abbas child]

Tammy, I'm not finding anything more in the way of websites for you. I am thinking, however, your mother needs someone trained in moving her due to her torn rotator cuff, hip problem and arthritis. A home visit from an occupational therapist (OT) perhaps could be ordered, who could train your step father. Being moved can look so simple to a caregiver, but cause unnecessary pain. Again, home health nursing and hospice would be good sources. I hope I haven't bombarded you. I need to sign out--midnight here. Best wishes, Tammy.
Ann

 

[Al]

I've been using the Ready Wraps about 9 months now to control swelling. Thay work great. Cost $814 Canadian.

AL.

 

[taminator]

Thank you Jeff! I want to say she had those in the hospital and HATED them (she's extremely particular about anything restrictive).

Thanks!

 

[taminator]

(Pardon all my posts - I'm trying to get up to the 10 mark!) I hadn't heard of the Ready wrap (Thanks Al!).

Ann, she has different therapists who come out. We bought an EZ lift but we're just so limited on how much we can move her at all. My mom is 5'10 and large build. The sling that goes under her arms of course rides up when you lift her, which lifts the arms up and causes the shoulder pain with the rotator cuff. We have a belt that goes under her legs but still have to lift with the piece that goes under her arms. I will have him double check though the next time OT is out.

Will check also on the doctor's orders and getting some type of reimbursement. The money needed is insane.

And no, you're not bombarding me at all. I greatly greatly appreciate everyone's help. I just don't know where to start with getting help for her so I figured I'd start out with what symptoms she's having and go from there.