CALS Roll Call Continued

vltsra

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Dear Tillie and Laurie, can't tell you how grateful I am to both of you for remaining here on the forum. Tillie you always have encouraging words for us CALS. Laurie, your practical and medical experience is so invaluable here. I know sometimes you tell us things we don't want to but perhaps need to hear. Thanks

V
 

lgelb

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Sometimes you can go back with the order and receipt. It depends on whether you are in a competitive bidding area, Ken, whether where the vendor you would be buying it from is in network, etc. And you will likely get scant reimbursement since they don't actually cover "shower chairs" but rather "commode chairs." It is a fixed amount based on your region and the item's code, as with all DME.

Short answer -- if you can't afford the chair on your own, it will may pay (though maybe not much) to go through the process, but you will likely end up with a lesser chair. If you really want the one you found and can afford it (don't forget to price-shop and remember these are not returnable!), go for it.
 

Ken15

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Introduction:

I have been reading the posts on this forum since early 2018.

I guess it is now time for an introduction.

My PALS/wife/Kathy was diagnosed w/ MND in Sept, 2017. This diagnosis was subsequently confirmed as ALS at the Mayo Clinic (FL) in Oct, 2017 and at Johns Hopkins (Dr Rothstein) in Nov, 2017.

In Jan, 2018, Kathy was notified by MC-Jax that she tested positive for the C9ORF72 mutation. This result was separately confirmed at JH. She previously had no known family history of the disease.

We have 4 adult children (ages 35-41), the oldest being an Iraq War veteran (Army) and the youngest is active Air Force. We have 7, soon to be 8, grand children.

Kathy has given permission for her blood samples to be in the CDC ALS registry, the MC database and the Answer ALS project. All 4 children have given blood samples to MC-Jax for research and the oldest has given a spinal fluid specimen for same. Two others plan to give spinal fluid specimens as well.

Kathy has had a fairly steady progression of limb onset and, while she cannot bathe, dress, or ambulate without assistance, she has good breathing, swallowing and voice functionality.

She was recently accepted into the BIIB078 Phase 1 clinical trial at MC-Jax and we will travel there next week for her first treatment. There is a 3/4 chance of getting the drug. As a clinical trial pre-requisite, she was again tested for the C9 mutation and thus was confirmed, yet again.

That's our story. I find this forum extremely helpful as we attempt to navigate and make the best of this disease progression. I hope to give something back in the form of little tidbits of advice/experience not covered by the forum veterans.

Thanks, in advance, for sharing your insight.
Ken
 

Ken15

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If you really want the one you found and can afford it (don't forget to price-shop and remember these are not returnable!), go for it.
I decided that I probably waited too long already, as my PALS is struggling to transfer from walker to raised toilet seat and from walker to stationary shower chair. You can just see the expenditure of energy.

Thus, I purchased it online today (over $200 less than on Amazon) and hopefully it will be delivered within a week or so.

Ken
 

ARCG

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My pals is feeling better, he had an infection and they put him on some new meds, helped right away. Although he is still tired and using trilogy more and this week is taking naps for the first time. Progression, I guess. We now communicate through text mostly and a text to voice system I set up. I know tobii is in our future. Right now he can still use his feet, though can’t walk and I have a foot mouse for him, so he can text.

My wrist is better, although still tender. I will probably go have it crate on Monday, if it doesn’t improve. I have an aide for a couple hours.

The next phase of this is very scary. The team I have assembled is a caring one, but I just don’t know if we are entering the late stages of this, he never had an infection before, but I read they are common in the late stages.
 

ARCG

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Had my wrist xrayed and fortunately not broken, just a bad sprain. Slow to get better because, of course, I continue to use it. Just need to keep wearing the splint for the foreseeable future and pick us a prescription for an anti inflammatory when my aide comes.

Lots of people coming this weekend for family event. Normally in my past life I would be look8ng forward to it, but am dreading it as I am no longer the same person I used t9 be and it is harder and harder to rise to the occasion, so to speak.

Try to end this on a positive note, I am grateful for hospice for when my husband was sick last week I didn’t have to play telephone tag with the clinic and try a bunch of different things until something worked. One call and the nurse came out, prescription for infection and he was better right away. Some day, when I have more time, I am going to advocate for covered qualified nursing home health for all ALS patients. It is the least we can do for their quality of life.
 

vltsra

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ARCG glad it is not a break. Hopefully you can keep it braced so it can heal. I know it's impossible not to use it, right? I know what you mean about having people over - I've had a list of people asking to come and visit my PALS for his birthday tomorrow. He says he is not up for it. I guess I am not up for it either.

Second of three disabled home remodeling experts to come over today. The guy who came yesterday was very nice. He says the best option will be a home elevator, which of course will be costly, but he is probably right. The problem is that the elevator will need to go into the garage where the non-operational sports car has been sitting for 16 years. I have been asking my PALS to please sell it for 3 1/2 years now. So now it is on my ever-expanding list of things that I must take care of. If I can get an elevator installed and the hospital bed my PALS can remain on one floor in our house.

I have an aide coming to help me starting Monday. At least that way I can get out of the house and get some fresh air and take care of doctor's appointments, etc. Sure would be nice to try and get some exercise besides lifting.

V
 

Jrzygrl

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I agree with you both about having people over. Sometimes I just do not have the patience for it. The amount of work it takes to get my DH ready can be daunting. He seems OK when company is over, but afterwards, more often than not, he's exhausted. And cranky.

MIL called DH yesterday asking us to go out to a restaurant for Easter. I have to feed DH and he feels other people are gawking. And then I get a cold meal. Not much fun for either of us. I told him we can do whatever he wants, but I know he very rarely will go against his mother's wishes. Ugh.

ARCG - Try to take care of yourself as best you can. Never easy for a CALS. Glad hospice is helping.

V - Hoping you can get the remodel figured out and scheduled. I want to purge some stuff DH has been hanging on to for too long too. He's reluctantly agreeing to some. Still holding out on others. Having an aide we can depend on so I can get out while feeling DH is well taken care of has been a Godsend. I hope you can get some "Me" time.

Hugs to all!
 

lgelb

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Jersey, my method was to have both plates next to each other and alternate my bites in a 1:2 ratio with his. I would also converse with others at the table so it was less "watch us eat."

To Annie's point, even if you don't have hospice, any doc can write an order for intermittent skilled nursing from a home health agency who can provide it if/as needed as long as criteria are met. Same for PT, OT, RT, SLP services.
 

affected

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ARCG so glad that wrist is not broken, but a sprain won't heal fast when it's being used, so I guess that explains it all. Keeping it splinted and supported at least will help keep it fairly stable.

I'm so glad hospice is working so well for you, it's so important to feel supported and that you get a rapid response when you know something is wrong.

vltsra that aid is going to make a huge difference if you can be kind to yourself with the time he/she is there :) I hope you can get the remodel you need and the decluttering you need too.

It can be exhausting to have people over that's for sure!
 

ARCG

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The family event went well, and it was a nice gathering. Last folks left today, I went to get my haircut, had a volunteer stay with my pals and actually fell asleep in the chair. I am that exhausted, I guess. Weird to experience the outside world..I feel like Imlive in a different dimension

My pals is getting worse, looks weaker. He is experiencing some muscle pain in the wee hours of the morning. He takes meds before bed, but they wear off. He doesn’t want to take any more meds in the wee hours, because the process of getting up and taking the mask off, etc. is not worth it, he said. Are there any time release meds that may help? I have been talking to doctors and nurses but no solutions are forthcom8ng from them.
 

lgelb

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Annie, glad the gathering went well. What does he take now before bed and how many hours does it last?

Also, as you know, it can help to tackle muscle pain with bed angles, pressure boots, cushioning to bend/support the arms, etc. depending on what/where it is.

Best,
Laurie
 
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ARCG

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He takes baclofen and Valium. They prescribed no-car , (spelling?) painkiller. But that doesn’t help at all so he doesn’t take it.
 

lgelb

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Valium won't last all night for most people, and it is a class of drugs where you gradually need more for the same effect. It's a knockout drug, not addressing the pain.

If he gets cold, you could try a low voltage heated mattress pad to help the muscles relax, and for the pain besides the rest of what I mentioned in terms of positioning, massage before bed.

Depending on any other medical conditions/drugs (always check for potential interactions, of course), other options [WITHOUT the Valium] include a low dose of doxepin (6mg if <65 and 3mg if older is the current recommended starting point) before bed, or Ambien CR if falling asleep is an issue as well, either possibly on top of an NSAID like ibuprofen.

Just another note that for PALS who have back, hip or knee pain, raising the feet the right amount in addition to the head can really help, sort of a C shape.
 
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ARCG

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Thanks Laurie,

I will try raising his feet more and I will ask our dr. about the other meds. I like the heating pad idea as well, that may help.

Annie
 
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