"Getting Ready" Chapter 7

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June 2022 ALSFRS 37

Ask any Vet and they will tell you that at one time or another, the VA (Veterans Affairs) Health care system sucks. Since I am a disabled retiree, all of my care can be conducted through the VA. The VA also has a special ALS team, and they've been doing a very good job. The VA rates ALS at 100% disability, which means on a scale of 0-100%, I am 100%. This matters because if you are 100%, you get max help/benefits in many areas. Health care, tax reductions based on the state you are in, education benefits for yourself and family, free fishing and hunting licenses, and other services depending on where you live.

Shortly after getting the PEG in, we went to see the VA ALS team. Our first visit took place entirely via telehealth. You meet with each doctor on Zoom rotating every 30 min. for a total of three hours. The team consists of my primary Neurologist (also the Team lead), Occupation and Physical Therapist, Pulmonologist, Nutritionist, Psychologist, Speech Pathologist, and Palliative Care. They had me stand up, walk around and do other tricks for them. They also spoke with both Laura and me on my current condition. After the meeting we went into “Ah, ha, ha ,ha, stayin’ alive” mode. Yes - I stood up and did the dance, bell bottoms and all. After all I live “All In” like Jesse taught me. There are very few things an ALS patient can do to prolong life, and even those things are not a guarantee. Use the current drugs on the market, eat well, exercise, and so on.

Riluzole is a medication used to treat ALS and other motor neuron diseases. Riluzole delays the onset of ventilator-dependence or tracheotomy in some people, and may increase survival by two to three months. Radicava works by reducing the oxidative stress in the body. People with ALS have high levels of oxidative stress. Radicava is the second drug administered via intravenous infusions. Initially, patients have a daily infusion for two weeks and then have two weeks' rest. Recently Radicava came out with an Oral version as well.

I started Riluzole the right away. After all, if it works, that could be two months more blogging time. I have not seen any difference, but that’s the thing, you just kind of have to trust that its working. There is no way to tell if it prolonged your life or not because ALS is different for everyone. Since I have had no side effects, I figure I'll just keep taking it. At the time, the oral Radicava was not available and driving to get the IV was not the right fit. I heard the oral was going to come out soon, so I decided to be patient and it released in July 2022. Oral Radicava is taken on an empty stomach first thing in the morning using the PEG. I started my first round in September and was doing well with no side effects until ninth day. On that day, about an hour after taking it, I went to the ER. I felt as if I was being choked and could not get any air. Once at the hospital I was checked out and released after six hours. I was breathing fine and all my blood work came back fine so I went home. The next morning I had a follow up so I took day 10 and within an hour felt the same way. I decided to eat hoping to suck up some of the meds. It seemed to work, but I decided to do a self evaluation. I realized that since starting the Radicava, I was consistently short of breath, bleeding at the PEG site, feeling weaker, and a bit more unsteady. So I stopped both meds on day 11. After a few days, I was feeling much better so I decided no more Radicava for me. If something doesn’t help, I’m not doing it.

Starting in June, Laura and I went to work on getting ahead of all of this. Our mentor Joanie counseled us very early on to get everything you are going to need before you need it. There is one commonality among PALS - each of us will progress and everyone will eventually need the same medical devices, but the timing for when that need arises varies greatly. We started on all the VA documents (and there are a lot of them! It is the Government...), but our Paralyzed Veterans of America (PVA) rep kicked ass and helped us prepare and process most of the necessary paperwork for us, making the process very smooth. If you are a Vet with ALS or know one, contact PVA ASAP.

Within a few months, we had our two wheelchairs (standard and automated), cough assist machine, suction machine, CPAP, new mobility van and all of the supplies for any feeding and medical issues. We still haven't gotten the Depends yet, but I'm trying to hold off as long as possible (I love Laura, but not sure if she loves ME that much yet). I am also an Army retiree and have medical care through my retirement, so where one fails the other steps in and works it out. All in all, I am very blessed to have all the care I need at this time.

When I was working with the dealer for the wheelchair, he came to the house and I got to test drive one he had on hand. You might think, how hard could it be to get a wheelchair? Let me tell you, the wheelchairs on the market today come in different configurations, colors, shapes and sizes, including front wheel or mid wheel drive. There are so many options that it would be easy to get overwhelmed, and if you've never used a wheelchair before, you definitely don’t know what you might eventually need. I went with the Permobil F3 with American flag design. Sounds like the next Talladega Nights movie: “The Permonator F3” 0 to 6 MPH in 2 seconds, starring David DuBois, Living with ALS, coming soon to a theater near you. It can go up to 6 miles per hour, has cup, iPhone and tablet holders, a table and can even raise and lower to help get where you need. It has front and rear lights, blinkers, a horn and even an iPhone charger. The only thing I need now is a cool license plate and flag.

Then it was off the get a vehicle in order to the transport myself and the chair in. Once again, the VA has a program for that and provides a good amount of funding to get one. It takes about two weeks to get the approval paperwork needed to take to a dealer. If researching the wheelchair wasn’t enough, try finding a mobility vehicle. We first thought we wanted a SUV. No way do we want a van - it’s just Laura and I - and only families with young kids drive vans. We were far past our vans days, or so we thought. I got right on it, started doing my research. SUV, mobility, color, make. Well, that went down a rabbit hole real quick - thousands of vehicles popped up. Then I learned there are vehicles you can drive, enter from the back, or from the side (mind out of the gutter people). Do you need a chair lift to get you in? A ramp? Automated or manual? How many wheelchairs do you want in it? After lots of research, Laura and I decided to go with a Hybrid Toyota Sienna, so off to a dealer we went. By now, we knew you purchase the vehicle and they would send it off to get modified. The dealer told us it would be six months to get the van because of chips and supply chain issues and another 2-3 to get the modification. With our tails tucked between our legs, we went home to rethink our plan. Once again, I got on the net and this time found a company Mobility Works who sells modified vehicles and they happen to have Hybrid Toyota Sienna’s. Within three weeks we had our van, affectionately known as "BAB" (Big Ass Beast). The modifications lifted the van more than 6 inches. Next to the standard Sienna, it’s BIG. It has all the bells and whistle the standard 2022 vans have, with mobility features including an automatic ramp that deploys from the side on the push of a button. Although it cannot even get into underground parking lots because it’s too tall, my oldest daughter can stand upright inside.

I have always told my kids and Soldiers for years you have to follow the six P’s, Prior Planning Prevents Piss Poor Performance. It’s now October 2022. We have all the tools we need (with the exception of the home modifications) and we are ready. As I stated at the beginning of this post, the VA has done a great job for me and I have what I need to be prepared to LIVE - not die - with ALS.