The first bit of advice I received in my ALS journey was “don’t stop moving “. Ok! Solid and simple. Right? But Any sort of motion is in direct opposition to ALS. What I can move requires focus and effort that you won’t understand, even if you are watching me. The fucked up thing is that I feel strong. My legs feel like I can stand right now. Arms too. Yet when I try, not much happens and I get frustrated. This cycle constantly repeats and always ends in capitulation and depression. Over the past three and a half years I’ve gone from a treadmill, but then I got wobbly. To a stationary bike, but then started slipping off. I’ve tried little stepping machines and pedals I can use from my chair. Those work ok to keep the blood flowing but it’s difficult to be disciplined when you don’t get to see results. Ya know? Hmmmm?
Physical therapy is a God send. I get an hour of range of motion exercises twice per week and I love it. We switch between active and passive, upper and lower body and it is the best bang for the buck. I wish I could add a third day but Doctor Insurance says no. Yup. I really want to get into a warm pool once a week for physical therapy. Hell, once a month would be great! Not only is it incredibly therapeutic but it’s liberating. No wheelchair, bed or sling. Just floating. Ahhh. But alas, doctor insurance doesn’t agree. Oh well. Hmmmm.
Obviously moving by myself is difficult and seems to only be getting worse, as expected. So I rely on others to do my moving for me in a constant need of adjusting. Spasticity in ALS is common and with me, it causes my muscles to contract intensely. This used to bring painful cramping but my muscles have weakened and I’ve learned to relax into them so the pain is less. But if my hands are on my wheelchair control when I yawn your feet better be out of the way because my chair just lurches. Ahhh! Hahaha.
I love my wheelchair and the freedom it gives me but getting there, or anywhere is a task that can require two people. I have a hoyar lift which is just a people crane. I have to be rolled over on my side so a canvas sling can be shoved under me. Then I get hoisted into the air like a Scotty piñata and rolled over to wherever I need to go. Wheelchair, shower chair, toilet or gurney. It’s about as helpless and emasculating as a man can get. Especially if the toilet is involved. I know this is ALS Uncensored but I think it’s okay to skip the graphic details of what happens next. It ain’t pretty but it’s real. I go to great lengths to plan my diet and supplements to avoid having to use public restrooms. I’m sure many of my pALS eventually decide it’s no longer worth the effort to leave the house or the general radius from their own personal throne. Can’t say I blame them one bit. Peeing or having an accident is manageable. Poop? As the saying goes, nobody has time for other people’s shit. True yesterday. True today. Ya know? Hmmmm?
I’m telling you all of this to get you up to speed with what takes place on a regular day. From bed to fed is 90 minutes minimum. Add an hour for a shower. So when I tell you that I’m going on an airplane, you can fully grasp the magnitude of what has to take place for that to happen, successfully. With minimal issues or damage to my equipment. Ya know? I’m sure a few of you might be shaking your heads and asking why bother? Why make the effort? Spend the money and time? Why Endure the stress and frustration and impose it upon others? I suppose I have
been asking myself the same questions on some level. The answer probably lies somewhere between I want to and I can. I’m a traveler and explorer at heart and I also want to prove that I still can. Both for myself but to others as well. It takes teams of people and Herculean efforts to summit mountains, explore oceans and rocket into space. Their journey is not so much different than mine. These are my expeditions. Expedition ALS. By conquering the impossible, we conquer ourselves. Right? Right! Hmmmm.
So I flew off to Tahoe and I thought I’d chat about what is involved. Everyone wants a definitive guide for what to do and how to do it and it just isn’t out there. Team Gleason and Curbfree with Corey Lee both go a long way to spelling it all out but there are so many moving pieces and parts it’s hard to get to detailed. I’m going to try to fill in some gaps but this is my first expedition so expectations need to be realistic. For my first expedition I’m going to a place that I know well so I can have a few advantages, like having friends to come save my sorry ass when I get stuck. And I will most definitely get stuck. I’m an old Jeep guy. We get stuck for fun. Everyone I know has chains, a high lift jack and a flask. I’m covered. So flights from Tulsa to Tahoe are booked. Flying direct isn’t an option. I chose Delta because I’ve always had great experiences with them and I want every opportunity to pull this off. Ya know? I booked directly with the airline so there is no middleman. Before calling them I had the spec sheet for my wheelchair in hand and I’ll be taking a copy with me. I have also scanned a copy to my phone. The airlines are particularly concerned about batteries and you have to know what you are bringing.
Before I go any farther here, I feel I need to throw in a few disclaimers. No one is paying or sponsoring me. I just like what I like and do what I do based on my own research. I have a Permobile F5VS wheelchair, TD Pilot and I’m stubborn. I also try to learn from the mistakes of the people that came before me, improve, and then share with you. That’s it. Now, back to the show.
Tickets are booked. I have paid up for extra leg room and to be close to the front. Notes of my needs are connected to my reservation and confirmed by phone. I also have the Delta app and a frequent flier number from my past life. They have been informed that I will be bringing my personal power chair to the plane door and requiring assistance, including the use of an aisle chair, to get to my seat. Since I have a layover, I will have them bring my wheelchair back to the plane door so I can use it before the next flight. I’m also doing this so I can see the condition of my chair and to assure that it is with me and doesn’t get lost in the shuffle. Hopefully we don’t land late. Hahaha! To help make my trip through TSA security screening I have a precheck known traveler number. This too is a relic from my previous life and one of my more favorite investments, especially for traveling internationally. I’ve never been much for standing in line. I know being in a wheelchair gets me around a lot of lines anyway but precheck is an extra insurance policy. Many credit cards will pay for this perk. So check it out. Ya know? Of course you do.
Once we’re at our destination we need transportation! Now days, in larger cities, there are Uber and accessibility taxis available but in Reno, not so much. Ideally i would rent an accebile van or suburban from Hertz but the ADA, the Americans with disabilities act doesn’t apply to car rental
companies, so they don’t bother. Fortunately for me there is one company, with one van available for about $200 per day. Yup. And no pictures available. To say that I’m taking a leap of faith is the understatement of the year but everything else has fallen into place so I’m taking the risk. I’ll certainly let you know how it goes.
I’m bringing everything I need except for a hoyar lift. I reached out to ALSA in Reno and they are loaning me one for my stay. They are even having it delivered to my hotel. Pretty nice of them I think. I’m bringing my own sling but this is a great way for them to help me and I appreciate it. Hmmmmm.
My hotel is all set. I’m staying at a pretty nice place that you probably don’t want to hear about but it is what it is and I’m going to tell you about it anyway. Hahahaha! Edgewood resort and golf course sits on the southeast shore of Lake Tahoe and nothing short of incredible. I’ve been going there for special occasions since 1988 and I love it. I also have a few friends that work there so call me biased but if you’re going to Tahoe Edgewood should be on your shortlist. Tell them Scott sent you! Hmmmm.
My other reason for staying at Edgewood was I wanted to make sure I was going to be somewhere that understood my ALS requests and requirements. Many hotels do not guarantee ADA/Handicap rooms. Even some of the best hotels will not guarantee ADA rooms, which of course is absolutely bullshit. I’ve even had manager friends shrug and tell me there’s nothing they can do. One of the problems is that, just like handicap bathroom stalls and service dogs, anyone can game the system, claim whatever they want and businesses can’t really refuse them. Handicapped Parking spaces are almost as bad. If I can’t get a confirmation email for an ADA room, I just won’t risk staying there. Ya know?
But the real reason I booked Edgewood is simple. I wanted to impress my girl. What can I say? I’m a romantic.
Ok. Ok. Ok. I’m stopping here because I want to drop this and start on the second part. It’s probably going to be three parts so stay tuned and remember, it’s only a mild case of ALS. Peace.
