Defeated and worried

[starente15]

I've tried explaining to my mother the importance of my father getting a customized PWC. For his future needs, comfort, etc. and that Medicare only pays once so it's important we get the right thing.

She went to the doctor yesterday to have a note signed for the order and they faxed it to the medical supply company to get a standard, off the shelf power chair. She said that the office staff told her that me and my brother can't say what he needs. This guy is primary care doctor, not treating him for ALS.

I don't know what to do anymore. I was trying to help ensure they did things the right way to avoid financial burden in the future but she trusts this doctor's opinion on everything. I guess this just a vent at this point. I don't even know what to think about how this could turn out.

 

[Green Queen]

Your mum sounds like my nana. She is convinced when we go to sydney next month they are going to cure me.
I reckon you and your brother need to drop hints etc, you know leave brochures etc, so she thinks your idea is her idea.
All the best with a solution.
God bless, Janelle x

 

[Alana]

Your comment on this Star reminded me: This guy is primary care doctor, not treating him for ALS.
I went to our primary and wanted him to sign off on a disability card for the car. The doctor looked at me and said I can't sign this your husband is not needing a wheel chair yet! I almost laughed at him. I'm trying to be one step ahead of the game and he couldn't understand. We'll only start using it when it's needed. After giving him a lesson on my husbands needs he signed the paperwork.

And heads up for anyone else requiring a placard, go to your local AAA (USA) much easier than the DMV.

Wishing you the best for the next round. Blessings Alana

 

[tripete]

Star if you can contact her ALS nurse. Let them know the situation and the name and phone number of the regular doctor. I know mine would try and get it fixed. I am sorry that you have to go through this.

 

[starente15]

Thanks! I've just reached out to the Physician's Assistant at the clinic. She's helped me get a lot of other things done. Just hope she's not on vacation!

 

[starente15]

That's incredible Alana. Ironically this guy did sign off on our disability placard! Even when you're trying to stay one step ahead, you're usually three steps behind. It feels like trudging through quicksand most days. If this guy knew anything about ALS maybe he would have suggested my father see a neurologist five months earlier when his head was dropping, his voice was changing, he was falling asleep constantly (one time in the car in the driveway!) and he lost 40lbs.

The best part, yesterday he wrote down "progressing rapidly" which freaked everyone out. I see my father every 6-8 weeks and believe that although he's continuing to progress, it's on the slower side.

 

[Atsugi]

Star, your lessons learned are important for everyone, thanks.

After diagnosis, we NEVER saw the primary again. Everything was coordinated through the ALS clinic.

Many times, you won't be able to help your parents, and you'll see them make mistakes. The best thing you can do sometimes, is simply be there and keep their spirits up. Just my humble opinion.

 

[gooseberry]

Star, I second Mike. Steve no longer sees his pcp. Everything is done thru his als physicians. They write every med he needs and get treatment for him if anything comes up. They don't put it off.

 

[lgelb]

It works both ways. We generally didn't find ALS clinics as helpful as PCPs. But no doc nowhere should be ordering a stock chair for an ALS pt. (I assume you mean custom measurements weren't taken and nothing was specified beyond the seat dimension, or something of the sort.)

Since Medicare only pays for one in a blue moon, I'd get the order rescinded, if necessary by calling your mom and/or the doc until s/he calls the company. Whatever angst that entails isn't a candle to your dad suffering in his last months or years, and I'd say just that to all and sundry.

 

[starente15]

It all worked out in the end but it was a battle. My parents insisted on having the order filled (stock chair). I told my mother I have given her all the knowledge about this situation that I have and she will have to do what she will with it. If she needed any help she could let me know but there was nothing else I could at this time.

My brother and sister in law begged and pleaded for them to reconsider but they wouldn't. The next day she must have gotten nervous because my brother drove them to the medical supply company. The people there said, "we didn't know he had ALS. This chair might be ok now but won't work in the future." My mother sat in it and said it was very comfortable and it was also too small for my father. They cancelled the order and left with the form which we'll take to the clinic on Friday.

 

[tripete]

Glad it seems to have worked out.

 

[cheerleader]

A suggestion- a great addition to the permobile is a cup holder attached to the arm. Helps keep it easier to hydrate without asking someone to get the drink. This can be ordered to come with the wheelchair. Donna

 

[Nuts]

Star, you are doing a wonderful job and your parents are very fortunate to have you helping them through this. I'm so glad the chair order was cancelled and your dad will get a proper one. Whew!

 

[starente15]

Thanks everyone. That was a close call! I know it's hard for my parents to accept help and actually, just to NEED help like this. They also trust everyone which is nerve wracking. On to the next thing!

 

[gooseberry]

Crisis averted! Great job!