New Forum Participant

[Calvin-CALS]

Hi, All,

I've been a member of the ALS Forums for a while and even posted a question or two. But this is the first time I've posted to this subforum.

I'm the primary caretaker of a good friend of mine, Patti. She was official diagnosed in November 2013, and she's been living with me since July 2014. At first, she didn't need a lot of help, of course. But as she's been living with me, her needs have increased.

Well, she fell getting out of the car Monday when her legs collapsed under her. Up until then, she'd been able to get in and out of the car with a lot of help and the use of her walker. But that's over. She's been basically in bed for the last week because she's afraid to walk, even with her walker, and quite likely it's not a good idea for her to try. We do have a transfer chair, so I can get her around the house, but no way to take her to the doctors, let alone anything fun.

That's bad enough, but we have a bunch of balls in the air right now getting her DME. These are all things we started on many months ago because we knew she'd need them eventually, but bureaucracy (United Health Care, government agencies, doctors, etc., etc.) have dragged things out. So while we're managing all that, NOW is when she needs the stuff. "Eventually" is today.

What she needs and is still struggling to get:

1. Rehab chair
2. Hoyer lift
3. Wheelchair van
4. Long term care insurance benefits
5. Hospital bed
6. Bi-PAP

Oh, and have I mentioned incontinence also started this week? Yeah!

This week has been very f***ing tough in a way it hasn't been up until now. It's a blizzard of sh** at once!

After doing what I could about the practical problems, I realize that I also need emotional support. So I'm writing this post, and I plan to participate in this subforum pretty much every day.

Hello!

 

[affected]

Welcome properly Calvin

What a friend you are to take Patti into your home and become her CALS. Not an easy task and you are facing a heap of hurdles that I can't quite imagine as I was lucky enough to always have equipment here before needed.

I hope some texans can give you some help in these issues in a real way, I can only offer emotional support from Australia. This we all can give in abundance.

 

[Calvin-CALS]

Thank you, Tillie!

 

[GregK]

Calvin call your local ALS Association chapter and speak with them about your 'list'. They may have some of it in the loaner closet.

 

[djbailey]

I have just joined the group myself but been on this journey for about a year. Our first preliminary diagnosis was in January 2014 with a the second opinion the first of March. Getting equipment can be a real nightmare. It took us from May to October to get the powerchair. All the paperwork got delayed and then we switched the first of September the Medicare as my Wife's disability started. What we did in BCBS then had to go to Medicare for approval. Bottom line is start everything early as you can get a doc to write that you need it. Let it sit in the corner until the day pops up that you need it. Everything will be going smoothly and then all of a sudden your PALS can no longer do something. As the lone caregiver for my wife, I now how overwhelming your days can get. Push your ALS or MDA chapter for loaner equipment. Most of the time they have it, even if it may not be the right size it will get you by until the insurance comes through. Make sure she gives you the legal documents to act for her and then be the squeaky wheel. It is unfortunately true that the pains in the ass get taken care of first in many areas.

 

[Barbie]

Hey Calvin--

I didn't see the PWC on the list--has that been ordered? have you called the ALS clinic? jump on them and get the ball moving. the ALSA chapter in your area may be able to help you as well. they hopefully will have a loaner closet for things you need right now. also may be able to talk and work with the clinic to get stuff going. I would guess that the most important items are the PWC, the hoyer lift and the bipap. work on those for now. the lift and the bipap are quick items and the PWC takes the longest of any item you will need. if it is ordered, then there may be a loaner you can use. or, if she can sit up right, a scooter may work for her short term while you wait. it is awful to be stuck in bed.

the only thing that should take any time is the wheelchair...everything else is pretty fast. is Patti a vet? I am asking because of the van you have on the list. not usually covered by anyone unless you are a vet. if she is, then I have heard the PVA is awesome. I am not a vet family so I only tell what I have heard from others.

In our county we have a free bus that will pick up disabled people and take them to doctors or shopping. you may have that... or some mobility companies rent wheelchair vans for the day as well.



hang in there.

 

[MaxEidswick]

>Push your ALS or MDA chapter for loaner equipmen

Ditto that! check w/ the houston mda & alsa too!


Welcome



Max - Monday, January 12, 2015 3:35:53 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[gooseberry]

Welcome Calvin. As you have discovered, this disease is a rollercoaster ride. Hang on! We are here for you. The local ALS chapter is a godsend and will help with equipment. Call them for best results. We have found a lot of very gently used equipment in our local hospice stores and goodwills. My mother in law is a big fan so keeps an eye out. Lastly, the insurance nightmare is ugly. I can empathize with you. We have had an ugly time getting things approved. You need some anxiety meds so you don't kill anyone while dealing with the insurance crazies. They don't use sense just read a script. First denial for dme is a paper pusher, if you appeal, someone with knowledge in that area reviews the appeal. So the for the bipap it would be pulmonologist.

Good luck, we are here for you! Steph

 

[Calvin-CALS]

Barbie, the PWC is what I called the rehab chair. Patti got the prescription in August. United Health Care approved the base and battery in December, but no other features – not even a controller! It's useless. We're working with Patti's employer's advocacy service to get it all worked out, but it's dragging on. UHC says the doctor didn't fill out the paperwork right. I want to get everyone in a room together and start smacking heads together.

 

[Nuts]

Hi Calvin, and welcome. Wow, what a wonderful friend you are. As you know, you are in for an all consuming journey--bless you for taking it on.

What a nightmare so far! Is Patti being treated at an ALS clinic by someone who specializes in ALS? It seems odd that someone with experience would mess up the PWC paperwork...

I'll second Stephs recommendation for antidepressants. A year into our journey I knew I needed some, but didn't realize how bad things had gotten until the Lexapro kicked in. I Skyped with the grandkids yesterday and my son called this morning to tell me that it was good to see his mom again... Take care of yourself.

 

[Nuts]

Calvin, I just had a thought. Have you tried local thrift stores looking for a commode chair? Often things like that can be found, barely used, for a reasonable price. It might help you if you can't get loaner equipment...

 

[Calvin-CALS]

Hi, Nuts,

The problem is that Patti needs a bariatric commode chair. I might get lucky if I shop around, but it's not likely.

I saw a perfect one months ago for $25 being sold by the side of the road in some tiny town we were passing through on vacation, but she didn't want it because it wasn't just what she needed, and she was expecting to get a 3-in-1 any day via prescription.

Alas later, United Health Care (and I'll keep using the SOBs' company name!) turned down the 3-in-1 as a "convenience item." Wish I could turn back time to that day!

 

[Calvin-CALS]

Hi Calvin, and welcome. Wow, what a wonderful friend you are. As you know, you are in for an all consuming journey--bless you for taking it on.

What a nightmare so far! Is Patti being treated at an ALS clinic by someone who specializes in ALS? It seems odd that someone with experience would mess up the PWC paperwork...

I'll second Stephs recommendation for antidepressants. A year into our journey I knew I needed some, but didn't realize how bad things had gotten until the Lexapro kicked in. I Skyped with the grandkids yesterday and my son called this morning to tell me that it was good to see his mom again... Take care of yourself.

Hi again, Nuts,

The doctor who prescribed the rehab chair is at a university MLA clinic. And he is a specialist in ALS in particular. His research centers on familial ALS. I don't know if it's his error or United Health Care's, or something else.

Actually, I'm already on anti-depressants and anti-anxiety medication, which predates Patti. Maybe that's a good thing. I'm keeping an eye out and watching for things I do that make me anxious and depressed, like minimizing my feelings until they sneak up and overwhelm me. One of my best friends is a psychologist, and he's making a point to tell me if I start showing signs.

 

[smoochiegal]

Calvin,
God bless you for helping a friend in such a BIG way.
It sure feels like all of a sudden that we NEED these things NOW..
No matter how we try to be proactive and plan there will always be a time when we it sneaks up and takes us off guard!
Keep plugging.
Keep posting we are here for you!
Cheryl

 

[Nuts]

Calvin, I'm glad you have friends looking out for you, too! That insurance company--wow. I wonder what would happen if you contacted someone much higher up the chain and ask them how, after last years ice bucket challenge, their claims people could be ignorant of the realities of ALS. A little trick my father taught me that works--go straight to the top, where a high powered assistant will fix the problem in order to keep it off the boss's desk. If they won't fix it inhouse, a little social media action might get their attention. It sounds like you already have a pattern of poor response that they might not want publicized.