What should I request at Clinic tomorrow?

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Good for you, I have learned in this game there is no such word as hurry or as fast as you can. Be patient or you will wear yourself out. Always looking forward to tomorrow.
Al
 
Thanks, Firefighter, good advice.

But I want to get my foot braces before I can't walk any more!
 
My husband was rapid progression, so waiting around was not an option.

There is a tricksy balance between being a squeaky wheel that gets the attention and overturning the cart :sneaky:
 
Yup. No more Waiting. Delays. Dropped balls. Etc not an option anymore.
And....sorry but why why why? Why do we have to put up with a low level of care? It took the clinic 2.5 weeks to order the hoyer lift. I gave up
Waiting. asked PCP. 2 days. Nope. It is just not right.
 
I can often answer how, when, were, who, but why oh why - that's the one I can't ever understand ....
 
Al.
Some PALS are fast progressing and cannot be helped by an overwhelmed clinic. One month ago Tom had a weak stand and could shuffle a few steps. He was able to enjoy his cake on his 70th birthday, Jan. 6th. Now....he cannot stand or walk. As of yesterday he will no longer eat by mouth. Only enteral feeding.
You are wrong to criticize other PALS or CALS.
Everyone is different. And the purpose of this forum is to support one another, even when we may not agree with them.
Your post made me nauseous.
I am fighting for my guy. And yes. To me....its all about him.
 
My feeling is that doctor's orders should be acted on within 24 hours. If that is unrealistic in this day an age then certainly by 72 hours. A clinic 72 hours behind in processing physician orders is overwhelmed in my opinion.
 
Al, my husband was gone 11 months after diagnosis. He went from running his own cafe, doing all the cooking, ordering, cleaning, staff managing and client interaction, to gone, within a year.
Thank you for your opinion, but your situation is not at all typical of most PALS. We try to constantly give information here on our own experiences but everyones mileage varies. You are happy to wait and let things go slow, as an extremely slow progression PALS. That is valid. The OP has no guarantee of being slow progression.

Please don't make a PALS feel they have no right to good care and dignity in how they are dealt with.
 
Mary and all, as Tillie notes, progression rate varies widely in ALS, and in the States, the extent to which BiPAP, feeding tube placement, Hoyer lift, hospital bed, etc. are ordered by the clinic's neurologist(s) or turfed out is not any kind of standard and will depend on the team at hand. PTs and OTs may not sign orders, but often generate them for a physician's signature. And there is not an academic medical center that is not severely understaffed.

The justification for reimbursement is a Byzantine process that has nothing to do with clinical necessity, and Medicare defaults lag PALS' actual needs, e.g., power lift, power bed, tilting bed, to the extent that loaners and cash can save in the end. Everyone should be trying to get a ResMed BiPAP, etc.

Past BiPAP, there are severe shortages right now of many types of equipment, most of which is manufactured in Asia or Mexico. A DME can push back any time and say they are out of whatever. They often juggle inventory by contract, not need. It is always worth contacting multiple in-network DMEs. A clinic will typically stop with its favorites.

Therapeutically, the bulk of what PALS need relates to physical medicine & rehabilitation (physiatry) more than neurology. But the "system" has made neurology the specialty called on to do certain tasks. PALS can and should call on whatever specialty applies, as well as their PCPs. Neither may have anything to do with the clinic or the center it's housed in.

If you like the people at your clinic, and you're getting something out of going, you should go (or log in). If you don't, many PALS are able to look elsewhere, go less often, or stop going. But I wouldn't apply any set in stone standard for responsiveness, with so much that is out of their control.
 
Al,

Not to pile on here, but three weeks to put in an order is ridiculous. It says they don’t have enough staff to process their paperwork efficiently for all their patients. It’s the clinics responsibility to hire enough people to deal with the paperwork of order submissions. It is not selfish or ridiculous to expect them to appropriately staff their clinic. I got this at my first ALS clinic and switched to another and they process orders very quickly.

I have also been issued a variety of prescriptions and orders throughout my life and never had it take three weeks to submit the paperwork. When you’re dealing with a fast moving life threatening condition, it’s not unreasonable to ask the providers to work at a normal speed.
 
The clinics are funded by your tax dollars and donations, it's all about money. If your clinic is under staffed then it's probably under funded. ALS has a hard time financially both sides of the border I know as a strong contributor here in Canada what it takes and the work that goes into it. If you really need the device go out and buy it. We are struck with this terrible disease and like all the others it takes money to combat it and time, not every one can be at the front of the line. For those that care Iam wheelchair bound in that I purchased and I have a feeding tube and I live in a full care nursing home I can not speak the only communication I have is my iPad. Always looking forward to tomorrow.
Al
 
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"For those that care"
Yes.. We do care about you.
 
In Canada is there the option to go some place other than an ALS Clinic? What options are there?
When there are other options why stay someplace that isn't satisfactory?
 
The clinics are not funded by taxes here in whole as in Canada, Al. Academic centers get some tax dollars but not on that scale.

In the States, there is a robust infrastructure for let's say, cancer, that is a combination of public and private funds. You can go to a Comprehensive Cancer Center (funded in part by the NIH and I worked at one) and a lot of services/resources are open to you.

For rare diseases, the "normal" cobbled-together, definitely underfunded at the patient level, system just doesn't work as it does with cancer. The big bucks are not being spent for direct support, equipment, or innovation in ALS. But there is a massive ALS fundraising/executive apparatus that takes a lot of money to maintain. And the latter is certainly true for cancer as well, just that there is more of a balance, because the process of awarding funding is, let's say, a bit less insular.

Al, to your point, ALS indeed has funding issues on both sides of the border, but in many ways it is more about where funds go and who spends them than not having any.
 
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