Over the past two years, Hal has gone from being considered an “athlete” to being so weak that most “disabled” modifications are not enough. It has been if nothing else, an education. For the whole family.
When Hal the “athlete” first started experiencing problems (that we eventually found were part of his ALS) , he was running over 50 miles per week at a good clip – training seriously to qualify for the Boston Marathon. A local Rheumatologist we consulted was confident that Hal’s muscular soreness and fatigue were a normal part of aging. He advised Hal to back off on his training. Hal followed his advice, but continued to get weaker, and started to develop subtle speech abnormalities. Six months later, when Hal was finally diagnosed with ALS, he was still able to run at a much better than average pace for his age. No longer considered an athlete by his performance level, he was still considered “fit”, well above average in strength, lung capacity, and endurance. Some of the medical professionals we saw locally and at UCLA did not appear to be too concerned at that point. They tried to reassure us that Hal’s progression could be very slow – that it might be several years before he needed assistance with daily activities. Some extended family members also tried to reassure us – after all, although Hal was not up to his usual level of fitness, he was still running, talking, eating, he looked strong – why worry about the probably distant future.
Do I wish they had been right! But unfortunately, Hal’s progression was rapid, even though his general heath and fitness were superb at onset. Hal ran a half marathon on September 4, 2009 – one month after diagnosis. The way he describes it, that race “used up his running muscles”. After that race, he was only able to jog, and for not more than a couple of miles. But when compared with the general population, Hal was still “normal” and healthy. By November 2009, Hal had to give up even jogging. By early December, he was walking with a cane. He still managed to walk 2 miles, with breaks, and would still take the dogs out occasionally. By January 2010, he was using a walker and needed to rest after a few hundred yards.
In March 2010 Hal and I visited his mother in Texas. We took along Hal’s first motorized wheelchair – a small, transportable one without back support. By then, Hal fit into into the “disabled” category. He could still enjoy activities, but needed to prepare and plan so that he would not overtax his muscles. He could still eat, although he needed to be careful and eat slowly. He could talk, but not too loudly, too fast, or for too long. He could type, but his typing speed had slowed from 120 words per minute to at best 60 words per minute. He could hold things if they weighed less than a pound or so. Despite these limitations, travelling was fun.. An adventure. And modifications to allow for his disabilities were everywhere.
As 2010 progressed, Hal continued to weaken. He became more disabled – but still fit into a handicapped or disabled category. It was only recently that we became aware that most assistive and adaptive technologies are no longer relevant to Hal. He cannot be simply categorized as “disabled” now. He cannot write, and types with one finger of his left hand . His speech is difficult to understand. His hands are too weak to hold most things. When we travel, the focus is not on adapting things so that he is able to participate in various activities – but on his being kept safe and comfortable. Even for short trips, we need to bring his large, motorized wheelchair. A manual wheelchair is not sufficient – his wheelchair must not just provide transportation, it also needs to offer the tilt, recline, and elevation functions that supply back and neck support and offer us a way to move him into and out of the chair. Sitting upright in an airplane for over a couple of hours is very difficult for him. Plane changes are fraught with potential for losing his wheelchair, and other mishaps. Any place we stay overnight must not only be wheelchair accessible, it should also have a hospital bed, room for his Bi-Pap equipment, and some way for him to get to and use the shower and toilet. Just a ramp, shower bench and grab bars are not adequate. Being labeled “wheelchair accessible” no longer necessarily means “appropriate for Hal.”
There is no category for Hal now – no mass grouping with appropriate accommodations that allow him to easily travel and experience different, fun things. It has become very difficult to find places to go or stay that are set up for his needs. We can’t even go into most people’s homes. Because of this, trips and and touristing have become so much more challenging than they need to be! And he wants to and should be able to travel and enjoy life..
Now the good news: I actually found a hotel (the Mirage, Las Vegas) with patient lifts, adjustable beds, and other really cool accommodations. Places like that do exist – ya just gotta look hard to find them.
Las Vegas, here we come. . .