Debbie Zolnierowicz
Forum Replies Created
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On the scooter or “beginning” power chair end, I would suggest something front-wheel drive, like the Pride Jazzy Elite. My husband has used one pretty successfully in our rural yard/drive/gravel lane. He’s only been stuck once, and it was pretty nerve wracking. We have been lucky to use one from the Les Turner loan closet – because it’s only been 6 months and it’s no longer suitable for his needs.
Every person with ALS progresses at such a different rate and with unique needs. I would recommend that you address your question to a PT or OT at the ALS clinic. This resource has been a blessing in helping us in my husbands transition. A year ago he was walking with a cane. Tomorrow we are trying out his second Permobil power chair. The ATP who fit his first loaner chair was able to quickly see that my husband needed a chair with better rise and tilt to assist him exiting and entering safely, as he’s 1 foot taller and 100# heavier than I am. I feel really lucky to be able to try out these chairs on loan from the foundation. We are not only transitioning from rollator to power chair, but it’s also proving valuable at his desk, the kitchen island, the dining room table, and the puzzle table (success tbd still lol). I can’t wait to use it outside at his workbench and the gardens.
I wish you luck in finding the right solution for you!
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My husband also has slow progression lower limb-onset. Onset 2018, diagnosis 2020, and he is now using a walker. He can still get in and out of bed on his own, but only because of our bed.
We have a fully adjustable king-size bed, ours is from Serta. We’ve had the bed for over 15 years – the platform really does last that long! The platforms are actually twin XL and we’d used them synced to raise and lower as one. When we needed a new mattress this year, we decided to disconnect the platforms and get a “split king” (which is really just 2 twin XL mattresses). We had the flexibility then to get different types of mattresses, but we ended up choosing the same. We did switch to tempurpedic proadapt, primarily because of the supportive edge that is critical for getting in and out safely.
It has a zero-g setting, which places the feet slightly above a slightly elevated head. Then you can adjust it from there, including adding lumbar adjustment. He sleeps in modified zero g all night now, and this has really helped with back/leg pain and breathing (he uses NIV, but has been a CPAP user for 15 years).
As his spouse, I do miss being able to snuggle. But the dog is usually there anyway lol. As his caregiver, I’m relieved that he can get a great night of sleep every night. Getting in bed is slow but doable, but getting out is where this bed is so helpful. The head section moves up to a sitting position, and it’s much easier for him to move his legs off the edge & stand up using his walker.
When we went on our annual family trip this year, we were both anxious about being without his bed – both in terms of getting out, and his sleep position. We bought a few items that were not terribly expensive, but they made a world of difference and still have some use at home.
Contour Backmax Plus – foam cushion system that allowed him to sleep in zero g position.
Stander Stand Up Couch Cane. This is a bed table on steroids. It gave him enough leverage to push up, and I locked arms with him to support the upward motion. It also provided greater stability when he was getting into bed and adjusting.
Stander Bed Caddie 2085 – this is actually a “bed ladder” which we attached to the foot of the bed and provided a sturdy handle for my husband to pull/stabilize. We didn’t use this so much, because locking arms and pushing off on the couch cane were sufficient.
SitNStand Portable Lift Chair – we didn’t actually purchase this for the bed, but rather to convert recliners to a lift chair and to aid in rising from the dining chair, bedroom chair, lawn chair, etc. But we discovered that with a little maneuvering, he could sit on it on the bed & use it to raise him forward slowly to standing. Seriously the best $500 we’ve spent related to his ALS. We use it every day at dinner table and a few times a week on the back deck.
I hope this post is of some help!
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Do you see a pulmonologist at ALS clinic? In addition to the medications mentioned, a cough assist device and suction machine can help.
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John, your explanation really hits home. My husband started using a cane about a year ago, and he stubbornly stayed with it until this last March. He has a “field” job, and he was out making a visit when he fell in the parking lot. He wasn’t hurt physically too much, but it opened a lot of questions at work and definitely hurt emotionally.
Before my husband needed mobility aids, I was one of those people who “watched”. Mostly waiting on stand-by, wanting to let a person exercise their independence but keeping an eye open “just in case”. Now I approach it a little differently and try to offer assistance without questions, just a smile and a helping hand. And I’m definitely more comfortable looking AT a person using a device, and trying not to “look past their disability”. I mean, how can you look past it? Why should we? Compassion, dignity, and inclusion are my approach now. I feel like the people who acknowledge his limits and address him in a caring way make a bigger impact than those who just try to “treat him like normal”.
I’m rambling now, but the point I’m trying to make is that you may be surprised at new connections you make when you make your decision to move to a walker. People in the periphery of your life can mostly connect to their own limits or those of someone they know. And the people closer to you might feel a little relieved. The more comfortable you are with expressing your level of comfort or fatigue, the better for you!
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Medicare does not cover “convenience items”, even though they support ADLs (activities of daily living). For instance, a transport chair and scooters are only covered if it’s primarily to be used in the home for ADLs, yet most of us think of their benefit OUTSIDE the home to maintain quality of life and to seek medical care. To be fair, Medicare covers what they are statutorily obligated to cover. The laws for coverage are slow to change…remember that dental isn’t even covered, and most drugs are only covered with optional Part D plans. Many private insurance companies don’t cover these things either, but if you have an FSA or HSA through your employer, these are reimbursable items. Surprisingly, Medicaid plans cover more of these items because their covered members are some of the most medically fragile in the community. It’s absurd that in a country with our resources, the US still has such an archaic vision of what constitutes medical need. But I digress…
But you are right Katie to bring up the foundations and associations! We work with Les Turner, and the DME available through their loan closets is great. We’ve even tried out a few versions of power chairs (not permanent chairs, these are not custom at all). When my husband can’t use the SitNStand any longer, I will donate it to them so another family can benefit.
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I have worked in home infusion and home medical equipment for most of my adult life. There are a lot of confusing rules, some of which are different between Medicare and private insurance.
This is one of the reasons I support a single-payer system! We spend too much administratively on differentiating coverage, in prior approvals, appeals, claims processing, etc. It would be great if all of those resources went to expanded coverage with one single system, including affordable options.
Back to infusion though…Medicare Part B doesn’t cover oral drugs. However when the drug must be administered via IV, voila. Covered. As a matter of fact, it’s somewhat concerning that there IS an oral option now, because Medicare could stop covering IV option. Part D drug supplement is where coverage would be seen, when they get around to adding it to the formulary. Notifying your local US Rep about this concern is a good place to start.
There is a loophole in some of this Medicare coverage, and that’s with the Medicare Advantage plans. They MAY opt to cover it. Open enrollment is a ways away (fall) but it gives you time to research if such a switch works for you. You’d want to research coverage of the other drugs in your regimen, as well as other therapies and treatments. And of course, whether or not your physicians would be in network.
And hence my reason for saying that we spend too many resources in differentiating coverages.