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.
Come on...it 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."
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 www.redbuttegarden.org. 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.
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!
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.
