Things I wish I'd known about earlier that make life easier with ALS

[adozi]

• Female urinal
• Check for medical equipment resources available (loan closets, AT4all, etc). There is a lot of used equipment out there, and you'll need money.
• Ventilators are portable. We can roll around with them.
• Get the wheelchair you'll need, NOT a scooter (as soon as possible, prescribed by ALS clinic )
• even if you're getting eye gaze technology (also, eye gaze technology exists), print a few pages from speak book dot org
• Invisible hinges
• get the shower chair you need (head support, open butt, etc)
• although the computer part of a Tobii is durable, the eye gaze cameras are not.

 

[Nikki J]

Thank you Ashley!
I would add get things before you need them. Everything takes longer to get than you could possibly imagine. Don't wait until the last minute! Whether it is wheelchair ,eyegaze,hospital bed alternating mattress....
If you are going to do feeding tube do it when your breathing is good,
Research like crazy options like dps and tell your neuro and pulmo that you are interested if you are

 

[adozi]

If you're a premenopausal woman, get a Mirena IUD. Birth control and periods dwindle to nothing. Trust me, you're going to have enough to deal with, Without periods and babies!

 

[adozi]

Yes, Nikki! Feeding tubes make life so much easier! And do consider a diaphragm pacing system before your lung capacity gets too low. It will be sooner than you think, and it can add over a year to your life.

 

[nebrhahe53]

My insurance wont pay for these things until they are "medically necessary"

 

[adozi]

Do you qualify for Medicare? If so you can wait until you get it if needed. Explain things to them, and have them schedule all the Evaluations ahead and of time. If not, you could ask your doctors to lie, or lie to them. I don't think you can fake a swallow test, but you can tell them you're Choking when you swallow and have Trouble every mouthful. For other medical equipment, look for used equipment resources. Good luck.

 

[lgelb]

Neb,
Any plan, even a self-funded one, has an appeals procedure if they deny a procedure as not medically necessary. The DPS has an HDE for ALS and that should be cited if/when you appeal the denial. The DME benefit for a speech-generating device should be clear and present on the plan's Web site or within your Certificate of Coverage. Most plans, again, follow Medicare criteria for DME.

 

[Toughguy]

Thanks,
I'm writing for my wife
ALS diagnosis in Phila, 05/2013
Rick S

 

[adozi]

Dental bite blocks. I just found out about these just last week. As the disease progresses, your bite reflex may be triggered by brushing teeth, putting your teeth, toothbrush, and caregiver's fingers in danger.

 

[AfraidButNotAlone]

Man you hit it right on the head. I wish I had a female urinal.

 

[Atsugi]

A little flashlight for looking into our PALS mouth. It's a garbage can in there.

 

[adozi]

You are poking fun, Rob, but it is really great! It's so easy for guys... You can pee anywhere. Imagine having to transfer to a toilet every time you have to pee. Now imagine your caregiver has to put A complicated sling on you and use a lift. Let's say six times a day. Imagine not going places at all for more than a couple of hours, unless you dehydrate yourself. I was actually considering a suprapubic catheter. It's made a huge different in our lives. All thanks to Diane, whose instructions gave me the confidence to try it..

 

[SMP51]

ramp the stairs and make everything you can a smooth transitions early on. constantly just re adjusting things is a waiste of money, just get it done. and make th bathroom as wheel chair assessable as you can

 

[adozi]

Good point. Always think, is this going to work for me in the future, when you make a purchase or renovation. something as simple as a small ramp can make your life easier.

Get an AFO (ankle foot orthotic) if you have a foot drop. Doesn't have to be prescription. Don't get an expensive one unless it is fitted by a professional.

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