Here are some items, products and services that I’ve used and reviewed – most of them are Parkinson’s related but there could always be a few on other topics. Check the Announcements area on the right sidebar where I’ll announce new reviews that I’ve added.
How-to: Click on any of the reviewed product names in the gray boxes and the corresponding review will be displayed.
Inbrija
Inbrija
Summary
Inbrija is Carbidopa/Levodopa in a powder form supplied as an inhaler. It is inhaled via the lungs and bypasses the gut. Therefore, according to the documentation, it should cause the patient to ‘kick on‘ in as little as 10 minutes!! However, it is really meant as an ‘add-on‘ therapy to be used for off-times – not as a replacement for regular Sinemet. It can be used up to 5 times per day. The company also notes that it should provide up to an hour or more on ‘on‘ time when used properly.
I had followed this drug during it’s development through clinical trials – I even got accepted to one of the trials but was unable to contact anyone about how to proceed! The reason I followed this drug so closely was that, because it was an inhaler, it bypasses the ‘gut‘ and goes directly into the blood stream… For those of us with ‘off times‘ and a slowed stomach/gut, this would be a great addition to have in our back pocket! Needless to say, as soon as the product became available, I got a prescription to try Inbrija!
I found it was fairly easy to use, and very portable. The company provides a nice ‘pre-therapy‘ kit with documentation on the med, an animated video showing how to use the inhaler (via a mini LCD screen supplied right in the kit!) and a nice carrying case for your inhaler and 1-2 doses of Inbrija.
Unfortunately, at least for me, it has not lived up to it’s hype. There are a number of reasons for this:
1. The drug is supplied in capsules as a powder – which are put into the inhaler mechanism and inhaled. You need to use two of these capsules per dose. I found that the powder is just too ‘course‘ – which for me meant I coughed like mad after inhaling one of the capsules! Sometimes I would simply cough out the dose (which would appear as a cloud of white powder in front of me) – which was a waste since it then didn’t do anything. Plus it seemed I coughed and coughed the remainder of the day. I’ve seen from others that they too have the same issue. In my opinion, the powder in the capsules needs to be much finer than it is today so your lungs don’t rebel!
2. My body’s response to the drug was not as favorable as described in the literature. There were times when, even if I got all the drug to stay in my lungs (not an easy chore), it just would not cause me to ‘kick on‘… And even when I did, I never seemed to get the full response as I did when using the pill form – in other words, I would not get that full, relaxing ‘ahhhh‘ feeling one gets when the pills kick on. This may have been due to me, or my body’s response or metabolism – so others could be different. This is just what I experienced.
3. The cost for this drug is high – especially for those under Medicare or other government system. I’ve heard that the base cost – at the time of this review and without insurance – is roughly $32 per dose; so if you took three doses per day @ $32 each, that would be about $2,800 per month! Even with my Medicare Advantage plan I was looking at over $900 per month! (During the initial phase – if one got to the “Catastrophic phase”, it’s much less expensive and more reasonable) For me, that was simply too much for a drug that causes me to cough all day and doesn’t provide a full ‘on‘ effect!
(Note: Those under private insurance, or those who qualify for assistance – via the company’s discount card or other programs – may be able to get the drug at a much less cost; maybe as little as $30 monthly!)
So in conclusion, for me the drug had too many cons to it – high cost, less effect, and that infernal cough! Of course every patient is different – if you did wish to try it for yourself, you might want to check with your insurance company before asking your provider for the medication, in order to check what it will cost you. Note that in some cases your insurance won’t have Inbrija in their formulary, so in those cases you’ll have to request an exception. Also, if you qualify, you may be able to get a discount card available from the manufacturer that would substantially reduce the cost to you.
CleanCut™ Bath Cut Out and Conversion, Walk-in Tubs
CleanCut™ Bath Cut Out and Conversion, Walk-in Tubs
Summary
In 2020, we had our home shower completely remodeled into a shower that was much more accessible to me, being a PD patient. In addition to replacing all the fixtures, they added hand bars, and lowered the step-in to the shower; this made it much easier for me to get into and out of the shower without tripping. I’m no going to even mention the cost of this upgrade, except that it was five figures!
As some of you know (or will know once I publish my blog post about it) , we ‘downsized‘ in 2021, sold our home and bought a condo. Unfortunately, our new condo had the old-style tub-shower in the master bath (step up and over) and NO hand rails! I immediately had visions of me tripping getting into or out of the tub/shower; but we really didn’t – nor could we at the time – shell out another boo-hoo bucks on another shower remodel!
So before we actually moved, I began to investigate what other alternatives there could be to a complete shower make-over; and I can say that I didn’t think I would find anything safe or reasonable in cost. But that’s when I stumbled across an ad in a magazine for what is called the CleanCut™ System!
So what’s CleanCut™? Well, in a nutshell, they ‘cut out’ a piece of your current tub and install their CleanCut™ modification product/cover over the cut-out… transforming you tub into a step-in shower!
Our CleanCut™ Step Installed on our tub
We had ours ‘professionally’ installed via a company in the Kalamazoo area called Mobility Plus of Michigan LLC. Now, there wasn’t any reason why I couldn’t have simply purchased the kit from Amazon and, using their instructions and template, did the install myself… except: 1 – I didn’t have the equipment necessary to ‘cut out‘ a portion of my bathtub; 2. Nor did I feel comfortable – in fact it made me kind of nervous at first – doing it myself; and 3. I wanted Mobility Plus to also install a couple of hand rails in order to completely ‘transform‘ our shower into a safer place for a Parkie to get himself clean!
So here’s the process: First, you, or your installer, have to purchase a CleanCut™ kit – Amazon has these kits available for purchase.
CleanCut™Step Installation Kit
The CleanCut™ Step installation kit includes the following items:
• One CleanCut™ Step (narrow, medium or wide)
• One CleanCut™ Step Support Box Structure (large & small box)
• Template to be used for cutting the tub
• Two tubes of required adhesive and angled extension nozzle
Then, using the kit, you place their ‘template‘ in the proper place on your existing tub, as per the instructions supplied in the kit. Then use the template to ‘mark out’ the area to be cut out. Once marked out, the proper tools are used to actually cut, or remove, that section of tub. (Note: This can be a complicated, noisy, and messy thing to do. Unless you’re good with tools and know what you are doing, it’s my opinion that you leave installation to the professionals).
Once this is done and the cut out area prepared you then place the CleanCut™ step into place. Now, I’m going to stop here and mention what types of CleanCut™ steps they have available. First, they have probably what I consider is their most popular(and the one we purchased), the CleanCut™ Step. It’s their most affordable and most popular product, available in white and beige, and in 3 sizes:
Secondly, their CleanCut™ Ultra-Low Step. This model adds Step-In Accessibility to tall, higher profile tubs! It also is available in white and beige.
Then there’s the CleanCut™ Door:. Now this is a unique model. For all the other options, once you have the c process done to your tub, it becomes ONLY USABLE AS A SHOWER! Baths are a no-no, for obvious reasons (unless you like having a pool of water on your bathroom floor!) However, if you want a step-in shower, and still want to use it for a bath, you can get the door model. It adds a water-tight door for taking a full bath! Just step in, then take a bath or shower. It features a left or right hinge configuration, and allows for an easy bathing solution:
Finally, there’s the CleanCut™ Convertable. It features a water-tight insert that configures from step-in to full bath in seconds! It configures as a traditional bath or step-in shower, but has a removable, watertight insert that locks and unlocks quickly. The company claims it’s heir fastest growing and most versatile product:
All of these options are described on their website for more information.
Anyway, back to the installation. Once the step is in place and verified to be correct, adhesive and caulking is applied, and the process is complete! We had to leave it alone then and let it stand for 48 hours before we could use it, in order to make sure it’s settled and the adhesive has cured. Once the 48 hours were up, we were able to take a shower with our new CleanCut™ converted tub!
I first have o say this has been a God-send for me! I’m able to easily step into and out of the tub/shower with much less chance of tripping and falling. I know this is going to be helpful in the coming years as my PD advances. Plus, this whole thing, including the two installed handrails, cost a FRACTION of what a full shower remodel would have cost!
The people at Mobility Plus did the install job in about 3 hours; they were efficient, knowledgeable, and cleaned up the area completely when they were done (be aware the sawing process does create quite a bit of mess and dust). I would highly recommend them to anyone in the SW Michigan area wishing to have a CleanCut™ system installed.
So far, I couldn’t be happier with our CleanCut™ tub! I feel safer, it cost me less dollars – all in all we are very satisfied with this product and I highly recommend it to ant Parkies out there in need of a safer bathroom!
The New Parkinson’s Disease Treatment Book
The New Parkinson’s Disease Treatment Book
Summary
I wholeheartedly recommend this book to any Parkinson’s patient wanting to know more about the disease and the various treatments available. It is very comprehensive – even I learned quite a few new things from this book, such as ways to increase the efficacy of current medications (like adjusting the timing of your meds). I found the topics were broken down very well, and that makes it easier to look up information at a later time. Not only does it describe what Parkinson’s is and how it affects the brain, but also discusses symptoms associated with PD and the various treatment options – even includes a great chapter on DBS (Deep Brain Stimulation)!
About the only negative things I can say about the book is:
(1) It’s not as relevant today as it was previously, since it was last written/updated in 2015. The basic principles of the disease are the same, but a lot of other items and medications have changed, and/or been proven/disproved.
(2) Because it is so comprehensive, some may find parts of it boring, and/or difficult to maneuver through. And (3) As books go, it isn’t cheap (but the Kindle version is less expensive). None of these were were big concerns for me, as the great amount of information was worth it.
But all in all, I found this a great book and reference guide, and recommend it to my readers with PD or those who wish to learn more about the disease.
The Schwinn Meridian 7-Speed Adult Trike
The Schwinn Meridian 7-speed Trike
Summary
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