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

Saturday, January 16, 2010

Hello,

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

3 comments:

{Mullins} said...

Mark you are a brave man. Thanks for sharing your journey. We continue to pray for you & put your name in the temple. Stay strong!

Charlene Taylor said...

Mark - you have friends all over the country who are praying for you and keeping your name on the Temple roll. Laird and I lived in Higley for 17 years and watched Liz grow up; she's the same age as our son Quinn. Your determination to keep working and being there for your family are inspiring. Sorry I didn't get to meet you when I was in Higley/Gilbert in early November 2009. Next time through I will definitely plant myself in your doorway. I'm recovering from bilateral total knee replacement and have a vague feel for the legs not moving component of what you are facing. God bless you and your family! Incidentally, we had 1 girl then 4 boys, just the opposite of you and Liz. Charlene Taylor

Rasheta Family said...

I appreciate how open your are and grateful to be able to read your story. You are such a great guy. We are praying for you, but I would love to do more. Do you guys ever need babysitters, or can I come spend the day with Liz cleaning or cooking?? Be honest! Nik will be donating some time for you! I know you will get what you need.