A Little Reality

Every 3 months, Jon has an appointment with the ALS clinic at Hennepin County Medical Center. This clinic has figured out the right way of caring for people with ALS.

When Jon has an appointment they put us in a room and every practitioner imaginable comes right to us. The neurologist, respiratory therapist, occupational therapist, speech therapist, dietician, ALS association representative, social worker… and I know I’m missing some! Imagine what it would mean if this was not the case. The number of individual appointments Jon would have to make and get to each month. The driving, waiting and scheduling would be a complete nightmare. Life would be consumed by appointments.

Not only do they make it easy to receive care, the people are wonderful. And since it’s Jon, we spend most of our time laughing and having a good time!

Jon had his 5^th appointment last week. He is a full year into his diagnosis, so I thought I would give you an idea of some of the changes that have happened over the last year.

Last August, Jon’s speech was slurred enough to notice, but he was completely understandable. This August he is often asked to repeat himself.

Last August, Jon was feeling a little weak, but was still able to do almost anything. For example, I remember that it wore him out, but he was able to run the chain saw and pull some major growth out of our pond. This August, Jon has a very difficult time doing anything with his arms. Washing his own hair is a challenge, he uses both hands to get a drink, and uses a straw because it is difficult to get the glass to his mouth. To clean his ears with a q-tip in the morning, he needs both hands to have the strength to keep his arms up that long… you know…like five seconds.

In February, our family  went to Disney World (which really is the happiest place on earth, as it turns out). Jon walked around without any trouble from morning until night. We didn’t waste time! OK, he was tired at the end of the day but we all were. Now Jon uses a wheel chair if he is doing anything more than walking into a building.

Last summer, Jon would get a little more winded than usual when exerting himself. This summer, Jon started using a BiPAP machine to help breathe while sleeping at night. He gets quite winded walking upstairs and has a hard time breathing while lying on his back.

Last August, while Jon was already weaker, he had good muscle control. He could stand on tiptoes with both feet. Now he can’t get up on his toes, and can’t even lift the toes on his left foot.

A year, Jon had zero issues with eating and swallowing. At this point swallowing is taking effort and he has a tough time moving food around his mouth. This summer, he had a feeding tube installed (that is seriously the only word I can think of. I recognize that it sounds like he is a car, instead of a person). He doesn’t use it yet, but the surgery was less risky now than it will be later.

Last August, Jon was managing the operating room at one of the biggest hospitals in the state. Last spring he left work to be home with our kids. This a total benefit of ALS, by the way. There aren’t many of those, but this is definitely one of them!

When I stop and think about these things, there have been some big changes. But that’s what they are…changes. To his body. Jon is still the guy he’s always been. We laugh all the time. We talk about our day and what we want to do with our lives. He yells at our kids. (He also plays with, teaches and loves our kids.)  He reads books, we watch movies, we hang out with friends… We totally love our lives.

Earlier this week he randomly told me that he feels totally normal…until he tries to move. Yep, ALS is tough. But life is still pretty great.

Perhaps most importably, Jon can still dress like this. Yes, he is THAT ridiculous.