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

Friday, January 29, 2010

This week we finally started home school again. Mark and I had been talking about it for a few months, and felt like it was the right thing to do. I have been dragging my feet for a while though, thinking I could not handle those boys every day AND teach them, on top of everything else that is going on lately. But I've been surprised this week. There is a huge element of stress that has disappeared. No more racing them out the door in the morning to try and be on time after being up most of the night and waking up about five minutes 'till they have to be there. No more racing to get home when they get home at 3pm and we are still in town or waiting until 3pm to go anywhere and get anything done. No more homework! No more stupid red light/green light behavior cards to sign every day. No more phone calls from teachers asking if and when we are going to medicate our child. Can you tell I was frustrated? Mark was right, of course, I know this is the right thing for our family right now. We read together, and play together, and eat together whenever we want. We can plan our day around Mark's schedule. Which is a necessity, because some nights we don't get much sleep, and so Mark doesn't wake up 'till after 10am the next morning and it takes us about two hours to get him ready for the day.
I should probably explain why we don't get much sleep. Mark has been having trouble breathing if he lays down on his back. So he sleeps on his side, but he can't just roll over whenever he wants. He wakes me up and I help him get situated and comfortable. And we have to be careful because he does have pain in his left shoulder and his arm gets stiff and sore as he sleeps. He also has to go to the bathroom a couple of times a night. Some nights he wakes up and can't breathe enough to relax no matter what we do. When that happens I help him into his wheel chair and we just get up for a while, go into the kitchen and have something to eat or just talk, or he'll set his laptop on his lap, recline his chair and watch a movie on netflix. I usually go back to bed when he does that, but he does wake me up later to help him get back into bed. Usually this is when the sun is starting to come up and I am up for the day. So forgive me if you come to visit us and find me still in my jammies at 10am. We are tired. A few nights ago he finally decided to use the VPAP machine we have had for three months. And thankfully, it actually helped. He doesn't sleep with it, but just wears the mask for about 15 minutes before bedtime. Last night I think he only woke up twice. What a blessing.
We have so much to be thankful for lately. Every day I am reminded of what a blessing it is that Mark chose to be a police officer. What a wonderful and honorable career, and I can hardly believe the help and support we have received from Mark's fellow officers. They have truly gone above and beyond in their generosity and I am humbled to be on the receiving end of it. The fact that Mark is still able to work is a blessing I am hardly able to express my gratitude for. The police department has made it possible for Mark to work at the station, or even from home so that he can continue to earn a paycheck and provide for us.
We are also very excited to be having a baby girl! We had a bit of a scare a couple weeks ago in which we were afraid I was going to have a miscarriage. But it turns out the baby is perfectly healthy and growing as she should, but I have placenta previa, which may resolve itself by the time the baby comes, and if it doesn't I will have to have a c-section. At first I was upset at this news- a c-section! After having all my babies naturally I assumed this baby would be no different- I can do it, I am superwoman and everything. But then as I was telling one of my sisters about it all she said- a c-section! You won't have to go through labor! She also has had her six kids naturally. So it is starting to sound not so bad after all. Another blessing from heaven to be thankful for. And I am loving looking at baby girl stuff everywhere I go.

Saturday, January 16, 2010


My name is Mark Kelly. I was diagnosed with ALS and March 2009 when I was 29 years old. I just celebrated my 10 year anniversary on January 8 and recently found out my wife was pregnant and due with a baby girl on June 30, 2010. Currently I have four children Bryce who is nine, Hyrum who is seven, Harley who is four, and Bryan who is one. I'm currently working for the Mesa Police Department as a police officer taking reports over the phone and helping patrol sergeants with whatever they need. I have been working for the city of Mesa for the last five years and enjoyed the people that I work with.

In October 2008 I was hunting deer with my family in Flagstaff, Arizona and noticed some weakness in my left hand. I just figured it was cold outside so I ignored my hand. From October 2008 through March 2009 I noticed even more weakness in my left hand. In March 2009 we have a quarterly shoot where we have to qualify with our handguns and assault rifles. In order to be a police officer you have to be able to shoot with both hands. I shot perfectly with my right hand but when I switched the gun to my left hand I could barely hold the gun in my hand. Staff members at the shooting range noticed that I could not hold a firearm in my left hand. Sgt. Warren Solomon was the shooting master at the time and tested my left hand for strength. My right hand tested 80 pounds per square inch. My left hand tested 15 pounds per square inch. They thought I had nerve damage, muscle damage, or ligament damage. From that day on I started working light duty and taking reports over the phone.

After several doctors, neurologists, and specialists they finally told me that I possibly had ALS. I went to a doctor in Scottsdale who had terrible bedside manners and told me there was nothing I can do, and that I had 2-5 years to live. We asked him several questions about possible options and treatments but he just shook his head and said there is nothing we can do. Being frustrated with that I took my medical records to another doctor. We were looking into the Mayo Clinic but my insurance did not cover any Mayo Clinic treatments. So we were forced to look into St. Joseph's Hospital. We continued to go there for about nine months. I would have a doctor’s appointment every three months and every time I went to the doctor's office all they did was test me and measure me. They never offered any treatment, clinical studies, or hope that there is anything out there that can help me. It seemed like all they did was to measure me and test me and react to how my body was reacting. For an example, when I started limping, they gave me a cane. When I could no longer walk, they recommended a wheelchair. When my fingers started curling they recommended a hand brace. They are very nice people, but I don't think they are a very proactive bunch.

I am currently in a wheelchair. I can pick up my legs to move them and adjust them, but I cannot walk. In the morning I transfer from my wheelchair to my shower chair by standing up. I can stand up and lock my legs out but not for very long. Just long enough for my wife to switch out wheelchairs. My left arm is crippled and I cannot use it. My right arm is almost crippled and I can barely feed myself. It's so frustrating for someone like me, who was so active, to now not be able to do anything physically. I used to be very active as a police officer, sports, hunting, fishing, and with my family. Now I can't even walk, hold my boys, or throw them in the air. That's the most frustrating part about it to me, is that I cannot physically be there for my family.

I am noticing problems breathing when I am lying on my back. I usually sleep on my side some haven't had any problems sleeping or waking up in the middle of the night with shortness of breath. It's getting harder for me to roll over in bed, and I get claustrophobic if I cannot take the covers off of me. They ordered me a bi-pap machine to help me breathe if I need it. I do not use it yet and have not needed it. I have not noticed any difficulties chewing, swallowing or talking.

The disease started in my left hand, worked its way up my left arm. Then went down my left leg, then over to my right leg, then up my right arm, now it's working its way to my abdomen, back, and neck. I have fallen about a dozen times, but have not hurt myself yet. My wife Elizabeth has me on a healthy diet. She gives me the combination of vitamins, minerals, oils, fish oils Co. Q. 10, essential oils, and any other vitamin and mineral you think of. I take prescription drugs rilutek and low-dose naltrexon.

I just wanted to update everyone where I am and what I am doing at this point. The most recent procedure that were looking into is a stem cell procedure. Apparently, blood from the umbilical cord has stem cells inside of it and we are looking and to doing a stem cell procedure from the newborn babies cord blood. I don't know how much it cost or who can do it. It's just something we're looking into.

I have this new voice recognition software called MacSpeech Dictate that types this letter as I talk into a microphone. I have used this software to write reports at work. It's been a great help to me since I can't use my fingers and I've lost all my fine motor skills in my hands. Thank you for all of your love, prayers and support during this difficult time for my family and I.

Your friend,
Mark Kelly