CALS Roll Call Continued

[ReginaS]

@geneice - ALS and stage 4 lung cancer... My heart goes out to you and your family.

 

[ThisPresentMoment]

Oh geneice, I am so sorry to hear that you're dealing with both cancer and ALS! On one hand, I'm so thankful to live in an age when we have answers or medication for so many things that used to be life threatening. On the other hand, I get so very frustrated with so much of the medical profession. It often seems like they're working for their practice instead of the patient, and no one really listens. Don't even get me started ranting.

Good to see you Sasha!

 

[vltsra]

It's Wednesday...my PALS (limb onset) seems to be possibly experiencing some additional symptoms that could indicate bulbar involvement. We did a pulmonary function test last week and I believe his results indicated his FVC was 71% (but we'll get all the results next week at our first clinic visit). Meanwhile he is telling me he has "foamy white stuff" in his throat or possibly post-nasal drip. I know that PALS experience reflux; does anyone have a recommendation for what they do about this? He says he is not having trouble swallowing.

 

[affected]

V - not sure about PALS and reflux, we never had trouble with that.
I would recommend when you go the clinic you ask for a speech pathologist review.
Of course also discuss the feeling he reports of foamy white stuff, and in the meantime watch him for temperature etc in case he is getting sick?

 

[vltsra]

Thanks Tillie. We just got back from Urgent Care. The doctor there does not think it is bacterial (temperature normal, no other discharge) but says he does have inflamed nasal passages. He also has GERD. He's issued a couple of new prescriptions.

I'm concerned about his deterioration over the past 2 months; he says he is short of breath, tired all the time, not hungry, and his speech is more muddy for lack of a better word. I can't help but think this is the beginning of bulbar issues.

V

 

[ReginaS]

My pALS was diagnosed with GERD and possible asthma and later on it turned out it was neither GERD nor asthma but the onset of bulbar issues of ALS. He also had drop foot. This was at the beginning when we did not know yet that he had ALS. Once he mentioned all the symptoms in one appointment he got a quick referral to a neurologist.

 

[affected]

V - glad you had him looked at, it's always good to get it checked out as we don't want to just presume every change is ALS primary - anything can happen, other illnesses and then secondary issues like aspiration.

I hate that it always marches relentlessly forwards, fast or slow.

 

[ARCG]

Just checking in. We are having a rough go. My pals allergies are acting up and he is miserable. On top of that I got up in the middle of the night Monday and stumbled in the dark, sprained my wrist (don’t think it’s broken) and gashed my head. Fortunately I have lots of medical supplies and found a splint for my wrist. Of course it was my right hand, but I am learning to do everything left handed for now. It feels a little better today, the splint really helps.

He is wearing the mask all day at the recommendation of the nurse as his allergies have compromised his breathing even more.

I got him a bird feeder on Monday and set it up outside as he really loves to watch the birds. Glad I got that done before I fell.

 

[vltsra]

Ouch...sorry you hurt your wrist. I'm sure that doesn't help things. The bird feeder is such a good idea...I got one for my PALS a couple of years ago and have forgotten about it with everything else, but perhaps now is the time to fill it back up with finch feed.

Checking in too and feeling very overwhelmed. My PALS was on a plateau and just fell off the edge. His progression seems to have accelerated in the last month. A month ago he actually went out and played 2 games of pickleball. Now I feel like I am fighting for his life. He had his 1st clinic visit and I am getting calls 24/7 for various visits to help. Yesterday we had the ALS Association rep out to see if we can stay in our house. It will be a challenge but may be possible, but now I have to coordinate calling contractors and getting bids.

The ALS rep suggested a hospital bed which I was trying to fight for, so I have an order for it but now must stop because the ALS Clinic wants me to have a home health care representative out first to assess the home. So now I'm taking calls about that and trying to arrange them to come out as well. I need to get our old mattress removed, but a couple of the companies here in town want it curbside. Then I was trying to retrofit the main toilet with bars and maybe a higher seat...turns out it is an all-in-one unit with a built-in seat, and now the attempt by 3 people just to remove the stupid toilet seat has made it loose, which is worse. The respiratory therapist is finally coming out with the Bipap tomorrow, and so is my SIL which is always a bit stressful for me. I suppose it is a good thing to have us both trained in case I keel over with a stroke. Then I have friends who are very good and kind who are pushing us to move into their vacant house temporarily (which is one-story) and then we would have to move into another place after that. My PALS really wants to stay put if it is at all possible.

Today one of my clients asked me what a good time would be for me to come for a meeting with them and the agency they need to work with. Well, there is no good time actually. I've explained the situation and thankfully he is going to set up a call instead. I wouldn't have taken on this project had I known that my PALS' condition would worsen so rapidly. This has been a rough month.

 

[ThisPresentMoment]

Oh vltsra, I know how overwhelming it can be! Even with both Mom and I trying to cover what needed to be done, it was crazy. I was amazed at the number of people in and out of their house. Thankfully they were able to stay in their home by adding a platform and lift in the garage. We used a shower chair from ALS. When Dad no longer felt safe transferring to the shower, we went to bed baths.

For a long time, we were able to use a powered lift seat from the ALS loaner closet for the toilet. Similar to this:

(Commercial link removed)

They also have chairs that roll over an existing toilet. Having them out to assess will help, I'm sure.

I pray for peace and physical help for you and all of our CALS in the midst of the race to keep ahead of necessary changes.

 

[Jrzygrl]

Hugs, V. It is all overwhelming. I hope the ALS Rep can help you figure out the housing situation. We were able to stay in ours, but had to do some major remodeling. All this on top of taking care of your PALS is just so much.

When DH was still able to walk or transfer, we had a Toilevator put under the toilet. It cost about $200 on Amazon and raised the toilet about 3-4 inches. We went this route because we had a bidet seat installed so that he could "take care of things" himself. He now is full-time hoyer lift and using a commode chair, but the regular toilet/bidet was great while it lasted. The toilevator is much more stable than adding a seat on top.

 

[vltsra]

Thank you so much! I will have to look into the toilevator. Unfortunately this morning he was nearly unable to stand. I fear a hoyer lift is in our immediate future. I have had little time to adjust to all of this. Thank heaven for Depends.

Right now I'm waiting for the respiratory therapist to come, as well as his sister. Her concept of helping is bringing food over...which he may or may not be able to eat. I am not going to refuse as I appreciate her intentions. At any rate perhaps the Bipap will help stabilize things and maybe give him a little more strength to get to toilet and shower. With people coming over I wanted to shower him but ended up settling for a wet wipe "bath", change of clothes, shave, and tooth brushing.

Turns out getting the hospital bed has its own set of rules. The dr wrote an order, but then the ALS Clinic called and told me I need to have an additional set of people to come over and look at my house and tell me what I need to do and give me an additional set of phone numbers to have even more people come over to tell me what else I need to do. I am frustrated but guess I just need to follow their rules.

V

 

[affected]

@ ARCG I hope you can spend some time sitting with him watching the birds and allowing that wrist to heal OUCH! I broke a toe by rushing a bit and kicking a chair we used in the bathroom for him to sit on. Really makes everything so hard doesn't it? Hope you heal up fast xx

@ vltsra It's horrible when things happen rapidly. I hope you can find some solutions quickly at least as a fill in. Sometimes as CALS we have to think outside the box too. Our house was not suitable really, but we adapted so many things without huge cost. Chris simply could not get to half the house, and I set him up in the lounge room as it was central and had enough room for all his equipment. It is frustrating though having to follow a long list of protocols, I hope you find your way through the processes.

 

[lgelb]

We used a toilet seat riser with arms short-term. It was pretty stable -- Larry was 250#. But you will want to start thinking about a shower/commode chair.

V, if the doc wrote an order for the bed, you can take it/send to a DME that works with Medicare or whatever your payor is. I've never heard of a clinic or payor requiring a home eval for a bed, presuming you've done some measuring on your own and have room to have a couple of inches between the head and wall, for example. Not to be cynical, but you don't have to help them pad their billables! Of course, if you want evaluation for some other reason...

Annie, no more falls! Hope your wrist is better soon.

Best,
Laurie

 

[Ken15]

But you will want to start thinking about a shower/commode chair.

Thank-you, this is good information.

Question: I found a shower/commode chair and want to buy it NOW and then seek reimbursement from Medicare. Do you know if this is possible? Or, do I need to get the doctor's prescription to my DME vendor first?

Ken