ALS update

It looks like I'm doing some sort of pose from the movie "Titanic." Haha. At the time I was trying to walk into some crazy wind on top of the Wellsvilles. The photo dating back to 1995 was from another lifetime.

Background: The first ALS symptom was 3 1/2 years ago. Diagnosis was 2 years 3 months ago.

I think we will start at the top and work down.

Speech is continuing to slow down. Not a lot of power in projecting my voice.

My hair gives a thank you to my sister-in-laws, Sandi and Erin. This summer they gave Jeff lessons in how to put my hair in a ponytail. He is such a good sport in so many ways.

My arms and shoulders are weak. If I need to reach sometime that is eye level, I go on my tiptoes because then I am a bit taller and it means 3 less inches I have to lift my arms up. Everything is heavy.

My hands. The fingers are starting to curl in. Some fingers I can't extend all the way. It makes for an funny wave. My right thumb barely moves and for the most part it stays curled next to my palm. I do try to stretch it throughout the day. If I want to grip a glass in my right hand I will use my left hand to position my right thumb and then wrap the rest of the fingers around to grip. Drinking straws have become handy to eliminate the need to lift a glass all of the way. There is concentrated effort to keep my hand steady while using utensils in general. I use my left hand to pick up small objects. When taking my meds. often I will dip the tip of my finger in water and then when I dab at a tiny pill it will stick. From there I just have to lift it to my mouth. For all the zippers on my pants, there are now attached loops where I can hook my finger in and pull up. There is no way I can button my pants and so I use my fastened belt to keep things flat. At church picking up the sacrament bread and tiny water cups is difficult. Trying to shake hands with someone when my thumb doesn't lift up is awkward.

My legs. Balance is an ongoing problem with the result being more falls and more bruises. The real eye opener was when I tripped on a gravel path and went down. I was able to get my arms out in front to break the fall. But there was not enough strength to prevent me from grazing my chin and nose on the gravel. Braces and my hiking pole should be the norm when I'm out. When I don't use them it's because I am being stubborn or stupid. Probably both.

Walking. The heel to toe walking motion has been gone for some time. When I walk in the house without braces I concentrate to get my foot flat because my toes want to land first. It turns into more of a shuffle.

I sound repetitive from previous posts. I think back to a year ago on what I was complaining about then and in comparison to today...back then I had it good! That must mean that I better enjoy today.

(Are these updates helpful? Yes? No? I'll do one more "me" after this and then get back to the kids.)

July 2010 Road Trip

Glacier

Jeff asked where I wanted to go. I requested "somewhere with big wide open spaces and not a lot of people."

It seemed natural that the road trip would take us to Montana.

Erik, Claire, and Megan stayed with my parents while Jeff and I drove north. We took back roads and main roads and saw some of the most beautiful country. After visiting my cousin Jamie and her family, Jeff and I drove to Glacier National Park and then on to Waterton Lakes National Park (it borders Glacier but is on the Canadian side).

I have fallen in love with Montana and can see why someone could go there on vacation and never leave. Granted I was there in July and not January!

In the day to day we are surrounded by so much noise and have access to constant information at our fingertips. I hate when all the "noise" begins to infer with my ability to focus on my children or have an uninterrupted conversation with Jeff. As for the road trip, I loved having a break from computers and television and cell phones (there was a 3 day period where we didn't have coverage) . People are right when they say the phrase "peace and quiet." There is a lot of peace that comes from slowing down and being quiet.

Waterton

We saw lots of wildlife

... I consider myself warned

Popsicles (and the pink cast)

While gelato rules supreme, there is something to be said for popsicles. When I am sitting outside with my kids on a hot summer day a popsicle seems perfect.

and the pink cast close up...

Gelato

(I didn't take this picture)

After Erik had worked on his Great Brain project in school, I thought, "I want to have a Great Brain project too!" So I picked the topic of gelato.

(I admit right here that this was just a weak excuse to eat more dessert...)

My "research" mainly involved taste testing. The gelato from one location was surprisingly bland, while the gelato from another shop made my tastebuds pop. The intense flavor selections are what gets me: Pink grapefruit, guava, passion fruit, key lime, lemon, blueberry, coconut almond, chili chocolate, amaretto, hazelnut and many more. Serving sizes are not so big but this Italian ice cream is so savory you don't need it.

I came up with my two favorite gelato shops, both which also have great panini sandwiches and other menu items.

San Gelato Cafe is on the west side of the valley in the Daybreak neighborhood at 11259 Kestral Rise Rd. Go for a walk around the lake and then head to the cafe for some gelato - yum! (I heard they have live music on Friday nights during the summer.)

Bella Cittas is on the east side at 2101 East 9400 South. If you keep driving east on 9400 South it will take you right up to Little Cottonwood Canyon which is so beautiful this time of year (then again it is always beautiful).

Broken arm for Claire

BEFORE...

AFTER...

The "before" picture was drawn by Claire shortly after we got our trampoline a month ago. And the "after" x-ray was taken Thursday evening as a result of that same trampoline!

Following the accident we took her to a nearby hospital thinking it would be a simple 3-step process: x-ray, cast, home.

The x-ray revealed a nasty break and we were told to go to Primary Children's Hospital. Jeff drove her there and she went in for surgery around 11:30pm. The surgeon set Claire's arm via x-ray, as it wasn't invasive, and put in 3 pins. After she set her arm the first time Claire's arm had turned white and she could not find a pulse. The surgeon removed the pins and re did the procedure. Following the surgery the dr. found a pulse on her arm below the break but was still concerned that the blood flow to her lower arm was being limited.

At 6:00am Claire went in for surgery #2 with the same orthopedic surgeon, along with the chief vascular surgeon and a Fellow. They sliced open her arm and found that when the the bones had been reduced (put back together) her artery had gotten caught and pinched between the bone. So as the orthopedic surgeon was putting the bones together (again), the Fellow lifted up Claire's artery so it wouldn't get caught, and the vascular surgeon put in the pins ( for the 3rd time).

The orthopedic surgeon performed 11 surgeries on Thursday night/Friday morning, and 6 out of the 11 surgeries were trampoline related. Of course we asked, and no, there is NOT (or ever will be) a trampoline at her house.

I joined Claire and Jeff after surgery #2, and spent the day at the hospital. I know it wasn't a life or death situation, but seeing my child laying on the bed hooked up to an I.V. was unnerving. Claire spent Friday night at the hospital so they could monitor her and make sure things were working properly.

She came home Saturday morning her arm was all wrapped up and in a sling. Megan saw it and said, "That's a BIG band-aid!" I have always thought Jeff was a great dad and these past couple of days again proved it. He has super-dad status!

Fortunately, before this week, we haven't had to spend much time at Primary Children's Hospital (once for a few hours when Erik was a baby). Having been there I can say we were impressed with the care that Claire received. Everyone we interacted with was great.

The whole thing turned out to be more than the 3-step process we had hoped for, and we are glad to have her home! (Claire should get a cast on Wednesday.)

Alan

This past Saturday we went to the funeral of my Aunt Julie's husband, Alan.

Alan was described as being a man of courage, strength, kindness and faith. His garden was so beautiful they said he didn't have just one, but two, green thumbs.

Simply by being around Alan made me want to try and be a better person. He was an incredible man.

Statistical Likelihood

Statistical Likelihood. I heard Jeff say that term in passing conversation and it got me thinking about my June 2 clinic visit.

What is the likelihood of a person spending an afternoon discussing options on adapting to and coping with an increasing debilitating motor neuron disease, ALS?
About 1 per 100,000 people.

What is the likelihood of me taking Quinine?
Quinine is a drug used to treat malaria and severe muscle cramps. In my case it would be used to treat my nightly leg cramps. The clinic pharmacist mentioned its $200 a month price tag. Yikes $200? It wouldn't be my most expensive med, but that is pricey. I said that we would price check on that drug with my sister who lives in the D.R. Congo because surely they have it there. The pharmacists response was to say, "You are freaking out the pharmacist with that talk about purchasing meds. from Africa!"

My sis. did check prices for me and said their Quinine comes from France and if purchased from a reputable pharmacy it runs around $8. So my answer is that I don't know if I'm going to take it. My main concern are potential negative side effects so I ought to study it out more.

What is the likelihood of me implementing the various suggestions I received like getting a light weight wheelchair for Jeff to push me in, and start using my hiking poles for added balance in everyday walking?
Not going to be happening yet for the wheelchair, but the hiking poles...I am getting closer to accepting that.

Here is where someone says, "Janae, why are you being so stubborn? If you were to implement these devices you could conserve your energy and be able to enjoy some of the activities you enjoy. Sure you can't walk all the way around the lake, but if you took a wheelchair you could walk part of the way and then Jeff could push you the rest of the way."

And now here is my response. I am not so worried what people think, I am more bothered by the patronizing treatment that sometimes comes when people realize you have a physical disability. The other day I was struggling with a relatively simple task. Afterward a stranger who was standing nearby smiled at me and said, "Good job!" I know her intentions were good but it left me feeling like a 5 year old being patted on the head.

I'm still here mentally. I know when you are staring at me and your whispers are not as quiet as you think they are, so just go ahead and ask your question. It's okay. Some days I respond with unintended irritation & sharpness. My apologies in advance.

On this one the clinic staff are right (ouch, that was hard to say...haha). I need to let go of my pride, accept the wheelchair advice, and recognize and appreciate the good intentions and kind acts.

I truly am grateful but still struggle with how to be gracious.

What is the likelihood of a cure being found anytime soon?
There are so many studies being done. Research on how to cure the disease and research on what causes it in the first place. Unfortunately there aren't definite answers. This of course means I had better warm up to the idea of a wheelchair.

That is it for now.