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

Sunday, June 28, 2009

Movie Night

Another week, more of the same. I am still waiting to hear back from the MDA clinic about the hand brace. Right now he is using a Nikken wrist wrap that I bought at the beginning of all this, before we knew what it could be. It looks like the top of a sock, but it's pretty sturdy and tight so I put that onto his fingers at night and it keeps them from curling up so much. It doesn't really do the job though. I think I need to make a few phone calls today and get him a real brace. Another thing I keep thinking about is Low Dose Naltrexone. It was first recommended to me by my mom's Doctor (who doesn't know me or Mark, he just told my mom to have me research it). So I looked it up and there is a website that describes it and says it will help. But the Doctor at Barrows is not optimistic and won't write a prescription for it. Which is really irritating because apparently we can't get it without a prescription from a neurologist. He says it wouldn't be harmful, but he isn't aware of any benefit. Remember this is coming from the man who says that Rilutek is harmful and might have a benefit. My question is -How could an "educated" person say something so idiotic?
Mark spent one morning making "wish-lists" with the kids and writing down all the things they want to do together, places they want to go. Bryce and Hyrum just wanted to go fishing, and Harley said he wants to go to church. Good boy. Then later he sort of caught on to what kind of list they were making and said- Disneyland! The best part is after they made this list Mark said "Ok, now, what are you boys going to do for me so we can do all these things on the list?" And they made an even longer list of all the jobs and chores and they would do- and then they went to work. It was a very productive morning. It sort of wore Mark out though. He gets tired and needs to rest throughout the day when he is up and trying to get things done, so he often feels quite exhausted by the end of the day. Lately we have been making a habit of watching a movie with the kids after dinner. Sometimes this is fun, and sometimes this drives me crazy because I would just rather have the house be quiet before bedtime. But I can't complain. He'll watch any movie with me, even my favorites which are historical dramas or musicals- movies he'd never watch without me, and I'd never bother to watch them by myself. At the end of My Fair Lady was the first time he actually complained- I have to admit, the ending stinks in that movie. But he liked it because the professor spends the whole movie complaining about women. Very entertaining. And the kids look forward to it because we make popcorn. Yes, after that post about the popcorn popper Mark went out and bought me one. It was a nice surprise and the boys were ecstatic.


Amy said...

That is irritating that he won't write the Rx you want. Couldn't Dr. Lamb write it for you?

Tara said...

I am Brad Thurston's daughter. He told us about the fast for Mark a while back and we have been praying for you guys ever since. Thanks for all the updates on how you are doing. You are married to a wonderful man, it was fun growing up with him.
Tara Kimble

{Mullins} said...

hey liz-my friend tom who works with mark said they're having a fundraiser. where can i get details?? he sent me a pic of the fyler on my cell phone but it was too small to read, lol! thanks! hoping & praying for your fam! xo kelli {payne}

{Mullins} said...

k nevermind-doug sent it out on fb. we'll be there!

Rasheta Family said...

I have made Nik watch all those old movies. Like Seven Brides for Seven Brothers, Singing in the Rain, The King and I. He always falls asleep. They are good sports.
What is the info on the fundraiser?

lyz's world said...

hi Liz, love your family dynamic! love your guys' strength. We'll see you at the fund raiser!

kim sherwood said...

Hi LIz This is Kim Matt and I just got done reading all your blogs. We think about you and Mark often. Your doing a great job Hang in there you all are in all our prayers.

Dawn said...

Hi Liz - My husband Jerry works with Mark & told me about what has been going on.
We are keeping you all in our thoughts and prayers!

A friend's father was diagnosed with ALS a little over 3 years ago and was only given estimate of 3 months to live. He was a cop also. She said if you contact the ALS association - they will loan any type of equipment needed and are a great support; also ALSTDI.com - they are a group out of Boston trying to find a cure & they teach an ALS 101 class that she said was very helpful. Her father started off at the Mayo Clinic & they were not happy with his treatment or the bedside manner of the staff there, now he goes to Todd Levine (neurologist) with Good Sam's hospital - she said he is amazing and she would highly recommend him! Her father has been in several studies through his doctor & she believes they have helped tremendously considering how well he's done despite the initial prognosis.

We wish you all the best!