Sunday, June 22, 2008

"I'm Not Dead Yet..."

Come is a movie quote...what did you think I was talking about! If you don't know what movie it was from the answer is at the end of the post. I thought it was a more catchy post title than "Last week was loads of fun."

Truly, last week we have had a great time. We went to Bear Lake (on June 13) with my parents, sister and her boys. Sunny but cold. Bear Lake blue must be the prettiest color in the world. It is simply breathtaking.

Monday (June 16) we had a Family Night with Jeff's extended family. We usually attend a couple of times a month. Family Night rotates through people, and the host family provides dinner and then we have some sort of a lesson. The kids really enjoy it and the gatherings are a good way to develop/maintain relationships with other family members. On Monday it was at Jeff's Grandma's house. In lieu of a lesson we had a project of installing a fountain and thinning her peach trees.

On Tuesday Claire turned 4 (June 17). We went and got our mother/daughter pedicure and she loved it. So we now have pink toes with the fancy flower detail.

Red Butte Garden is a family favorite. The gardens are well designed for each season. Big enough to be interesting for repeat visits. But not too big that a visit becomes an all day trek. Check it out sometime On Wednesday evening (June 18) I went with some friends who are plant nuts like me or at least had a good time wandering the gardens with us. Here is some of the group modeling our snazzy garden aprons made by a very talented friend, Jen. We are going to plan another outing so let me know if you want to come.

Thursday (June 19) was steamin' hot. We spent that afternoon at nearby splash pad with some neighbors and cousins. Megan was delighted by the jets of water that would spray out of the ground.

Friday (June 20) we had a low key birthday party for Claire. It was mainly cousins and a couple of neighbor friends who came. A great big thanks to Claire's Aunt Kristen who decorated a princess/dragon/castle cake to go along with the birthday theme of "Princess/Dragon" party. Thanks Kristen for the cake. Thank you Mom for all the prep help. And thank you Kim/Kayla for the idea we borrowed!
That night Claire had her first dance recital. We were so proud of her!

Saturday (June 21) a cookout and swim party at Grandma/Grandpa's pool. Here is Grandma LaKay with five of her grandchildren: Claire, Moses, Erik, Megan & Ava.

And the answer for "I'm not dead yet," comes from the movie, "Monty Python and The Holy Grail". This quirky movie has all sorts of quotable one liners. Although if I were to sit and watch it today, I don't know if the movie would seem nearly so funny as I found it to be 15 years ago. Maybe I'll talk Jeff into watching it with me. Who knows, maybe we will still like it.

Saturday, June 21, 2008


Megan and her kissy face cracks us up!

Oh how I have been teased about hugs because of the Funny FUNNY Friends entry. I have a belief that if someone dishes it out they had better be able to take it. So I'm taking it. Let it be known that when talking about hugs,the people I didn't want hugs from were: the checker from Target, or my mail carriers 2nd cousin, or the kid behind the counter taking my order at Papa Murphy's Pizza.

For the record I really wanted to hug the two women who came over this week to help clean my house. I had never seen them before in my life but by the end I wanted to give them each a great big hug! I think we are going to be BFF.

Monday, June 16, 2008

Sunshine Girl

Our Claire is turning 4 on June 17th. I love her sweetness, her goodness and her hugs. It cracks me up how Claire will start singing a random song. She will then have us write it down to put into her "song book", a purple 3-ring binder. I love when we are playing outside and she will come sit by me. I tell Claire that her hair smells like sunshine (because it does) and she laughs.

Growing up I was a bit of a tom-boy and would even cut the lace off of my socks. Sometimes we wonder, "Where in the world did Claire come from?" But let it be known, I am thrilled that she embraces anything girlie, glittery and pink. I told her that on her birthday we would go on a Mom-Claire activity in the evening and do whatever she wanted. She decided we will be going to get pedicures. I'm just guessing the color will

In choosing a name for our girl I liked how one website described the meaning of the name Claire as: Bright, Shining and Clear. That is our Sunshine Girl.

Saturday, June 14, 2008

Five o'clock shadow

I'm not talking about the face here. Our lawn is the subject. Ever since we have moved here Jeff has become obsessed with the idea of having a perfectly green lawn. And so going back to last fall he enlisted no small amount of chemicals as his ally in this quest. This spring the fertilizer came out again and again in generous portions (4 different kinds so far).

Wha-laa, the result is a lovely emerald green lawn. There is another side affect and it is that our lawn now grows so stinkin' fast! We mow it and I swear come needs another clipping. Seeing that Jeff is quite pleased with the green factor and because our lawn area is so small we just keep mowing.

Funny FUNNY Friends

Laughter may not always be the best medicine but it does work wonders! In dealing with ALS Jeff and I use humor whenever we can. The situation is beyond our control and this is just how we cope with things. Lucky for us we are the same on this matter otherwise one of us would have a lot of hurt feelings.

We are also so lucky to be in a neighborhood where we are surrounded by some really wonderful and quite funny people who love to laugh as much as we do. I was given a stack of cards from a friend that come from the website They were quite appropriate in a delightfully inappropriate kind of way (the woman who created them also lives in our neighborhood). I have received so many funny emails, stop by visits, a big bouquet of balloons with funny sayings hand written on them. Today some good friends brought over a bucket filled with goodies, along with "The Bucket List" movie, and a bucket list paper with the first line item being that we need to spend more time with them. I love the dry humor.

Then there are my fellow Garden Geeks who I love and adore. Always something to say about anything and everything other than ALS. The one exception was when I received this email from a Garden Geek with some button ideas. I had mentioned at one point that there was a family friend whose husband had cancer so she had a button that said "Cancer Sucks". I said "Amyotrophic Lateral Sclerosis Sucks" wasn't nearly so catchy. Here are button ideas from her responding email (a little background...If I don't know you I'm not an overly touchy feely person and these people know it...) so here are some from Shelby:
-If you don't know my middle name don't hug me
-Yea, I have what
-Must be under 40" to Hug
- I really don't want to hear it. Really.
-First, let's talk about you.
-Dinner? I prefer cash.
-If you Yoodle, then I'll Talk.
-Hug me. Let's get it over with.
- Hugs? I prefer cookies.
-Hugs? I prefer plants ( hahahha.)
--Have you heard the bad news...Rebecca's a Republican (he he he)
-Well..Hurry up and Hug me I haven't got all day.
-Limit. 1 question per visit.
-Stop. Share that hug with someone else.
-Think like a tree and Leaf (oh, I'm a true geek)
-blah, blah, blah
-I declare war!
-Hug or question. You pick.
-I'd rather be in Mexico .
-Don't make we wish I would have stayed home.
-A penny for your thoughts. Really. I charge.
-Put up your dukes ALS. I'm ready to fight.

Amyotrophic Lateral Scler-whatsit?

Amyotrophic Lateral Sclerosis. First let me apologize for the dreary first entry. I DO NOT want this blog to be a boring dialogue on health. But there are people with questions and so this can hopefully answer some of them.

I was diagnosed on June 3 with ALS, also known as Lou Gehrig's Disease. ALS is a neurodegenerative disorder in which specific nerve cells degenerate and die. The muscles then atrophy. There currently is no cure. Go ahead and google ALS and the outcome is dismal. I've been staying away from all the ALS websites, it is just too depressing.

The neurologist think that I have had ALS for over a year now. My symptoms go back to last spring when I was pregnant with Megan. It was relatively easy to ignore many of the symptoms because I was pregnant. Then my thinking was, "I just need to get back in shape". So here is an overview (kindof long and I don't care if you skim or skip):
Spring 2007- Noticed and commented to my OBGYN that my reflexes seem overly "brisk" and leg cramps were much worse than with the pregnancy of Erik or Claire. A lot of muscle stiffness.
July 2007- Megan was born (Wha hoo!)
Fall 2007- Workouts were difficult because my muscles seemed so weak. Gait for left foot changed, it was now more of a slap (I thought it went back to when I twisted ankle in May). I stumbled and tripped more often. Hand grip noticeably weak.
January 2008- I went in for a routine physical and to ask about me possibly having carpel tunnel. The Nurse Practitioner said to wear braces at night. I began training for the Ogden Marathon with some neighborhood friends. Emotions seemed a bit more extreme...things were so sad or so so so funny (turns out to be one of the symptoms).
March 2008- I quit training because instead of getting stronger, my body was even more weak. My arms became tired from holding Megan for long periods of time. I experienced difficulty putting together snaps on baby clothes, changing diapers, and turning doorknobs etc. first thing in the morning.
April 2008- Had a visit to an Orthopedic specialist for carpel tunnel. After a follow up visit she said I didn't have it. But had run a few other tests which all came back negative.
Early-May 2008- I met with a Sports Medicine Dr. about my gait. He gave me some physical therapy exercises to do for 3 weeks and if there was no improvement then he would order an EMG to explore the option of possible nerve damage. No improvement so he ordered an EMG for my legs.
Mid-May 2008- Realized weakness was not due to being out of shape...but this is muscle atrophy I'm dealing with. It was starting to get scary.
Mid-May 2008- My muscles began a near constant twitching (fairly subtle, but I can feel it occurring throughout my body) and occasional arm cramps.
Late-May 2008- I visited an Internal Medicine Dr. and gave her a rundown on every seemingly random thing that had happened. This was two days before my EMG appointment so she ordered in some testing to be done on my arms too.
May 30, 2008- EMG (think needles and electricity) was done on my feet, legs, hands, arms, back and neck. She tested over 30+ muscle groups and it was awful. I asked her if she ever watched the movie Ghostbusters (remember the early scene with Dr. Vincman...however you spell his name). After the results she told me she was very concerned and wanted to get me in ASAP to the Motor Neuron Disease Clinic by the university hospital.
June 3, 2008- Worst day of my life to date. I went to the university clinic and met with a Neurologist there. He had me give a run down on everything and did additional EMG testing (only 4 muscles this time). He then shared his impressions on ALS and asked me to come back the next day with Jeff. I went home and cried.
June 4, 2008- Jeff and I were at the clinic for 4 hours. We meet with another Neurologist who gave the same diagnosis, a dietitian, pharmacist, occupational therapist, nurse, rep. from the muscular dystrophy association. I told Jeff I would feel a whole lot better if I could do an EMG on someone. But really it was a very comprehensive visit and everyone was so kind and helpful. I'm scheduled to return every 3 months.

Phew. What we have told the kids is that Mommy has a disease that makes her muscles sick so that they are not strong anymore. She will be sick for a year. It is a starting point at least.

In the last week and a half Jeff and I have been through every possible emotion. Finally this past Sunday we felt something new. Peace and comfort and that everything is going to be okay. I don't know what "okay" means. But still, it is going to be okay. I accept the diagnosis of ALS but I still hope for a best case scenario. Which in my mind is that the progression will stop and I can maintain my current condition. It isn't naive to hope for something. Although to cross that invisible boundary line of hope and then plop into denial isn't healthy. I will keep on hoping but to be honest the level of muscle atrophy I've already experienced terrifies me. But come on, to wallow in self-pity and depression would ruin me.

On Jeff: He is amazing. Truly amazing. And hands off ladies I have dibs on this guy for eternity. I don't want what he is experiencing and what he needs to be overlooked as he goes through this with me.

Lastly: I am so appreciative to all of the help and support we have received so far. I am recognizing my limits and so I pace myself more. I'm ready to move on with life and don't want to dwell on a diagnosis (today I worked out at the gym, ran errands and spent the afternoon at the park with my friends and our kids). I don't like being the center of attention and especially pity attention. Ugh. So please don't look at me with teary eyes and think "oh poor Janae". Wipe your eyes first. Thanks.