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.

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.

Family Vacation

Well we are home from Utah and had a wonderful time visiting Mark's family. Thanks to my awesome visiting teachers, we came home to a beautiful clean house. Thank you thank you thank you. It made my job of catching up so much easier. Cedar City, Utah was beautiful and cool. Everytime we go we say how nice it would be to live there. Mark and the two older boys spent most of Friday fishing on a little boat with Grandpa Loveland and Uncle Benny. Mark came back to me pretty sunburned, but he said they had a great time. Mark took this picture of Grandpa Loveland.

The boys were in heaven and caught these fish. They really wanted to take these beauties home to fry up but I was afraid they wouldn't keep too well in the back of the car for six hours.Grandma and Grandpa Loveland have the sweetest little garden and backyard, and I loved wandering around out there and taking pictures of my boys. Something about gardens and roses and fruit trees, just makes me feel at home. It was wonderful.Not long after we arrived Mark asked me why my nose was all yellow. Excuse me? I had already been around with Bryan smelling all the flowers and had gotten pollen all over myself. Oh well.

Strawberries growing like weeds! Harley kept sneaking outside to snack on them.
And here is Bryan playing in the sandbox. Getting good and dirty and loving it.

Mark is doing well. I know it did him good to get away and see all his family, even though it was tricky to remember all his vitamins and oils at the right times every day while we were traveling. I have to be honest though, he is getting tired of taking all the supplements and juices all the time. I really wish he could get everything he needs from the food he eats and not have to swallow a bunch of pills throughout the day. So I am trying to do more in the way of nourishing, healthy food, and trying new recipes. I have to say the family does not always appreciate my experiments. I win anyway though because the only snacks in the house are healthy ones. Do I sound like the food police or what? Oh well. That's ok with me.
I am also considering going gluten free for a while- although I know this is a big deal I think I can do it. I already miss homemade bread. Oh well. I was doing some research and found a website that described what one should eat to allow the body to heal itself. It is basically the paleolithic or "stone-age" diet. I generally stop paying attention at the word "diet" so I had never heard of this, but I am learning about it and I think with some tweaking it could fit my standards. You eat a lot of good proteins and fats, lots of fresh vegetables and fruits, and avoid any processed foods. You also avoid carbohydrates and dairy products. And here is where I would tweak it a bit. The website says this about dairy:

"Amazingly, many dairy products contain monosodium glutamate, or MSG. As you know by now, MSG is a potent neurotoxin. According to the Truth in Labeling Campaign, powdered milk contains MSG as a result of the way the product is manufactured.

"Ultra pasteurized" dairy products are processed with a higher heat, resulting in a break-down of more of the milk protein, which then contains free glutamic acid (MSG). Domestic cheeses that use pasteurized milk in place of raw milk are also a problem, as are any dairy products with carrageenan added to them, such as whipping cream, chocolate milk, buttermilk, cream cheese, cottage cheese, sour cream, and ice cream.

This is a long and exhaustive list, those of you who do not have an actual allergy to casein (milk protein) and lactose (milk sugar), may be able to use raw unpasteurized dairy products. There are companies that sell these products on-line."

Yay for raw milk. We are so blessed to live so close to my sister Melissa, who has a few milk cows and a lot of extra raw milk. Maybe someday I will be brave enough to get my own cow, but for now I am so happy to send Bryce over on his bike to get a gallon jar of milk in his backpack whenever we run out. He loves having this "job".

Mark was feeling nauseous for a day last week after drinking the clay and hasn't been able to touch it since. Even when I cut the amount down to 1/8 teaspoon in a glass of water. I hate to not use it when I know it works, so we compromised and put some in the bathtub for him to soak in. It actually looked a lot like the ditch water I use to swim in as a kid. And he said it made him feel "a little bit nauseous". I think I was using too much too soon. So I'm trying to focus right now on detoxing at a pace that doesn't make him sick, and yet is still actually detoxing. The essential oils I am using are quite potent and are a priority, three times a day. There are a few good ways that I know of to use oils (and I am very new at this) but the easiest is for me to put the drops into an empty capsule for him to swallow. And sometimes I will rub them into his feet. I know this is probably the best way, and Mark would prefer it, obviously, but I can't make it part of the schedule yet- I am still in the phase of parenting where the evenings are chaotic. Dinner needs to be put away, bedrooms need to be tidied up, and everyone needs a drink and a snack, and there's always one who claims to be starving and hasn't eaten anything all day. Of course he waits until bedtime to tell anybody. Some nights I fall asleep putting the baby to bed and neglect everything else. When I get up in the morning to my messy house I just have to tell myself -I am doing my best, my kids are happy and know that I love them, and the Lord will make up for the rest.