Cook Clan vs. ALS: Update

Well, it has been some time since I've written a report for you all about dad's condition. We were happy to ring in 2007 together in the Austin area. Mom and dad are finally getting settled into the new house. Dad has been watching LOTS of TV on his new 50 inch television, including the Chicago Bears. He is totally stoked about the upcoming Super Bowl.

Dad has limited mobility now and spends most of his time in his electric wheelchair. He got a new one in late November to replace the one we had borrowed from the MDA. The new wheelchair is quite snazzy and can recline as well as elevate. With it, he can get his body in just about any position he wants. This is great because it enables him to change positions throughout the day.

His neck is very weak these days and he can no longer lift his head from his chest without some assistance. His solution is just to tilt the wheelchair back til his head and neck are in a comfortable position. Dad is still able to walk and does go to and from his chair to the bathroom and bedroom. He likes to walk short distances like this and the doctor encourages him to maintain whatever mobility he can.

His arms continue to be weak and are mostly useless most days. However, some days, he can lift his hand to his head to scratch it (or flip the bird.. hehe). He has quite a bit of shoulder pain, probably due to the fact that he must sleep on his side (due to a choking sensation). Because he sleeps on his shoulder and isn't able to change positions much during sleep, his shoulders stay pretty sore. We went to the ALS clinic earlier this month and found out that frozen shoulder continues to be a concern and that if he develops it, he would be in quite a bit more pain. But, the physical therapist recommended some stretching exercises I can do on him each day. We call it his PT (pain and torture) and even though he doesn't look forward to the pain of raising his arm, we get a kick out of the jokes.

Our major setback of 2006 was in his breathing. His vital breathing capacity in September was in the 60s. When he went to the ALS clinic in December, it had dropped to the 30s, a major concern to everyone. With ALS, forced vital capacity is used as an indicator of survival and disease progression. The major contributor to a longer life-span for ALS patients is the bipap (breathing) machine. Because he is losing muscles that help him breathe, he uses the bipap as sort of an external diaphragm, forcing air into his lungs.

In the fall, he had some trouble with the bipap and was reluctant to use it. Because he wasn't using it regularly, he lost some ground. Unfortunately, this isn't ground that can really be gained back and the decline was pretty severe. The doctor indicated that if he continued to decline at that level, he'd have a matter of months to live. That's the bad news. The good news is that if he can maintain what he's got, he will increase his longevity. Of course, he came back pretty depressed from that appointment and was as hard on himself as the doctor was. He has been back on the bipap en force and is using it for long stretches of time now, even though it remains uncomfortable for him.

Dad can happily still eat but now almost exclusively eats ONLY the things that he loves... lots of ice cream cakes! It is just too much work for his jaw and neck muscles to invest a lot in anything difficult to chew. Still, I am amazed to see him put away multiple Jack in the Box tacos or chicken wings... some of his favorite eats. He and mom watch his weight very closely since he cannot gain too much (because of the peg tube installation) and cannot loose too much. Mom gives him a meal replacement shake feeding at least once a day in his feeding tube, sometimes more and he's been maintaining quite nicely.

All in all, dad is in good spirits and enjoys getting out and about. We've had some cold weather and have tried to stay out of it as much as possible. We're definitely looking forward to some warmer temps and the Spring activities that come with it. We often think of you all and are benefiting from your thoughts and prayers. We hope that you are well and that we will see you again soon.