Barrows Neurological Center

For those who haven't yet heard anything about the doctor's visit on the 19th, my apologies, please read on. For everyone else, I guess you know where to get up to the minute news (thank you Carla). :) Ok, so we got to the Barrows Neurological Center at St. Joseph's Hospital at 0930 and made our way to the MDA clinic on the 3rd floor. I was lost until we got there. Mark has always been good at finding places, one of his many cop skills. We were shown into a little exam room and there Mark was visited by four MDA people, and the doctor. First we saw the physical therapist, a wonderful lady named Deb who tested Mark's arms, legs, fingers, toes, measured the strength of his grip, and watched him walk down the hall and back. She gave him a prescription for a hand brace that will keep his left fingers from curling while he sleeps. Because of the muscle loss Mark is unable to straighten his fingers in that hand and when he wakes up in the morning his hand is tight and it hurts to stretch out his fingers. So a brace will help. She also wrote him one for an ankle brace, but he wants to try some active ankles first and see if that helps him walk without such a gait. She was surprised at the strength he has in his hips, legs and right arm. The weakness is still pretty concentrated in his left hand and just starting to affect his left foot. She also mentioned the possibility of Mark using a cane. And of course Mark is all for it- as long as it is the kind with a hidden sword inside. That sounds really safe. I wonder if the insurance will cover that.
Then we talked to two other people from the MDA who organize the clinic and who we are supposed to call at any time with any problem or concern. They were all extremely friendly and helpful. Next the social worker, who was very pleased to learn about our incredible family, friends, and fellow officers who have been so supportive throughout all of this. Did I mention these people are nice? I know if we ever need her services she will be a great help to us.
Then finally the doctor came in. He said the last blood and urine tests came back showing nothing out of the ordinary. Bummer. He scheduled one more blood test, something they missed the last time around, apparently. He also talked about the possibility of Mark's ALS being familial, meaning hereditary. We don't know of anyone else in the family who has ever had ALS, but because of his age, he thinks there is a good chance of it. Mark asked him how young was the youngest person he has ever seen with ALS, and he answered- you are. He said there have been rare cases of very young people, children, getting it, and in those cases it is always familial ALS. A DNA test will tell for sure, and if that is the case, he was hoping Mark would be willing to participate in research trials. Nice. Ever get the feeling that you can't totally trust a person? Then he asked if we had filled the prescription for Rilutek, which we hadn't, and he asked why. At this point my stomach is in knots. The truth is that I am totally against this medication, for the simple facts that it is the only chemical approved my the FDA for ALS, and it is expensive. They can't prove that it does anybody any good, because everybody who takes it dies anyway. What they do know is that it damages the liver. And for this reason the doctor wants to have Mark get his blood drawn once a month so they can monitor the level of damage. Insane. Having said that, I told Mark that whether he takes this Rilutek or not is ultimately his decision, and if he decides to take it, I won't make a fuss. Even if it means I have to literally bite my tongue.
So that pretty much sums up the visit. Oh we did get a handicap parking decal application to take to the MVD. That will be nice.
As far as diet goes, I am still in the "thinking about it" phase for going gluten-free. We've cut out the obvous sources of gluten like bread and tortillas, but I haven't figured out the substituting aspect of it, like using rice flour and I don't even know what else. So I've basically been cooking a lot of meat and eggs and serving it up with a lot of veggies and fruits, and raw milk. Nothing fancy, but the kids keep asking for toast and for me to make cookies. I got a case of cherries on Saturday from a co-op I buy from and made all this cherry jam and then I realized- what the heck am I going to spread this on? rice cakes? what am I doing? I guess I still have a lot to learn.