New to forum, venting, & questions...

[amandaw120]

Hi,

I am new to this forum. My mom (62 years old) was diagnosed in November 2013 with ALS. She moved in with me so I can care for her. She has progressed extremely fast. She has no use of her legs or arms. Her right hand she can use her finger a little, but it is extremely difficult. Her breathing was down to 56% 6 weeks ago (it probably would have been lower if they didn't let her recline when taking the test). We go on Friday again to have it tested, but she already says she can feel her test tightening. Speaking is also getting very difficult for her. She gets tired very quickly and her voice is soft.

All I ever hear from the doctors office is that ALS isn't painful. My mom is in pain ALL day. Both her feet are dropped, she can never get comfortable. The slightest crease in a sheet bothers her. She hardly wears clothes any more because any ripple bothers her. Does anyone else have this problem?

We use the hoyer lift to get her on a PVC shower/commode chair but it's getting very difficult. To use it in the shower, she is upright too long and it is getting harder for her to keep her head up. To go to the bathroom, it is also getting extremely difficult. She has a hard time going to the bathroom in a depends. Anyone have any suggestions on this? Our sling for the bathroom doesn't support her neck, anyone know of a better sling?

Does anyone know a psychologist that Skypes or Facetimes that knows about ALS and can help her cope with this? 6 months ago, my mom was fine and now she has this horrific disease that has taken away ALL her independence.

I probably have a zillion other questions, but will start with these. Thank you for the help.

 

[MaxEidswick]

Hi, Amanda --

Sorry to find you here, but welcome.


>6 months ago, my mom was fine and now she has this horrific disease that has taken away ALL her independence.
>I probably have a zillion other questions, but will start with these.

You will find help and support here, I am sure.

Kind regards and 'Hi' to your Mom!

 

[Nikki J]

I am so sorry. Do you go to an ALS clinic? While ALS is not sensory the effects on the body and the weak muscles can cause tremendous pain and they should know that and treat for that! There is such a thing as a reclining shower chair which might help a bit. There are also female urinals do not know if that might be helpful
Would she consider hospice services. It is a lot more than just giving morphine at the end. They could help manage her pain and support both of you

 

[Annie's Phil]

We used an Invacare divided leg sling with head support. It worked very well, and is much better for an PALS than the type without head support. She might find that she is more comfortable if she leans forward into the sling straps and let them support her on her shoulders. That position will also allow her to stay suspended over the commode while in the sling. You can lower the sling so that she is in contact with the commode seat but the straps are still taut so she can use them for support. It will probably take a little experimentation to determine which strap loops to use on the front and rear straps. The Invacare has 3 loops on both the front and rear straps. You can find it on amazon among lots of other places.

You might want to consider a bidet seat for the toilet if you don't already have one.

If your shower will accommodate the length, a shower chair that tilts back a bit will keep her much better supported than one in which she has to sit upright.

I would suggest you do range of motion exercises for her. These are very important, especially for the shoulders because frozen shoulder can set in very quickly if the ROM is kept exercised regularly, and it is very painful if allowed to develop. But it's also important to keep all of the body's muscles moved through their range of motion or they become painful and the PALS will be in constant discomfort.

Welcome the the forum, though we're all sorry that you have reason to be hear.

Phil

 

[SMP51]

Hi,


All I ever hear from the doctors office is that ALS isn't painful.

I probably have a zillion other questions, but will start with these. Thank you for the help.

oh that makes me angry! please get your mother to an ALS specailist or at least an understanding neurologist. Your mother does not need to be hurting and a doctor just saying she doesn't hurt in his opinion does not change the fact that she does.

 

[Santa joe]

I wasn't prepared for the pain associated with ALS. My husband has pain in hands and neck constantly. He is now on oxycodone for pain that has been increased. Sorry you have to be here with all of us but glad you are. You will find this forum to be a source of comfort and knowledge. There are so many Pals and CALS that are caring, compassionate and supportive. You are not alone.

Debbie

 

[zoohouse]

Sorry that you find yourself here. Phil said it extremely well.

Paulette

 

[MaxEidswick]

>My mom (62 years old) was diagnosed in November 2013 with ALS. She moved in with me so I can care for her.

Hi Amanda, I forgot to mention in my earlier post how wonderful I think it is that you are there to help your mother through this very difficult time.

I, also, am 62. My little girl is going to be 32 next week. She is currently working on her Masters and doctorate in neurobiology in Germany.

I'm sure your mother is very proud of you. Keep up the good work and hang in there.

Max

 

[affected]

welcome Amanda though I'm so sorry you find yourself here in this elite club!

I remember in the early days my husband and I would say how grateful we were that at least ALS isn't painful ...

Then as his shoulders and arms wasted the pain started and it has been freakin cruel!

Phil has given a great description of the kind of equipment that could help with those tasks.

 

[adozi]

Try a female urinal. In bed put a towel over an absorbant underpad until you get the hang of it. Prop her legs up on pillows and bend them out. Basically the most undignified position imaginable. Make sure the entire vulva is covered by the urinal opening. When she is finished, lift the urinal up. You will be tempted to move it away from her before you lift it because you'll be afraid you'll hurt her. Resist that impulse, because you'll spill. In a chair, have her sit on a towel and use that to pull her forward so her pelvis isn't pointed down. Oh and lean the chair back first. Repeat & have toilet paper ready. This has made my life a lot easier. I hope it helps you all too. Best, Ashley