"Those who tell you something cannot be done have never done anything that required faith in God." Jen Backus

Sunday, June 21, 2009

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.

7 comments:

Amy said...

Mix your cherry jam with plain yogurt. Yummy!! There are really good recipes for gluten free cookies - they're pretty easy to make. Bread however is not so easy. There are some recipes that aren't terrible and if it's been a long time since you've had bread it will be easier to eat it. But maybe they've improved the recipes in the past few years. You should be able to get all the specialty flours and such that you would need at Sprouts and even the health food section of some grocery stores carry a surprisingly good selection.

Becky said...

serioiusly call me. I can make any recipe gluten free. from cookies to biscuts to bread. and from the recipies you already have. even sugar free if you need it to be. cherry jam would be great on some biscuts.

Elena T said...

Have you been to Shar's baking place in Gilbert? I think they have some great resources for gluten-free baking. I hope Chad calls Mark soon because I'd love to get together with you and swap info.

Also good luck with the Ritulek. Thank goodness for the Spirit, or how in the world would we make these crazy decisions?

Mary-Sunshine said...

Liz~

Annie told me the other day about Mark. I am sorry. My father-in-law was just diagnoised about a month ago with the same thing. My mother has been doing all sorts of things to help. If you want to talk to her about it, here is her email.
Laura.Compton@srpnet.com She has also done lots of research, as I am sure you have. But, just in case you wanted to email her and talk to her. We will be praying for you and your family.

Mary (Pugmire) Lee

Deanna said...

Hi Elizabeth
I appreciate the updates and your sense of humor. You are a great wife and mother!

Danny Smith

The Bostock Fam said...

hey liz,

this is Rachel (bradshaw) Bostock I was friends with KT Payne and hung out with you a couple times! Hang in there. We are praying for you. If you are interested in going gluten free I can give you a lady in my wards number and they are 100% gluten free because her son has an illness and can't have any gluten. so she could give you recipes and things. She is a super person to talk to about gluten questions. I know sprouts has gluten free brownies and cakes. and walmart carries a lot of gluten free 2. most of their stuff says right on the label gluten free.

Brian Duffin said...

My friend in NY lives gluten free. Check out his blog for information and recipes: http://redhatmandan.wordpress.com/.

He tags all of his posts on gluten as "Gluten Free Diet." Just glock on the tag and you will see all posts related to the topic.