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

Wednesday, April 14, 2010


I just wanted to update everyone on my situation, how I am doing, and how I am feeling. First off, I want to let everyone know that Elizabeth is doing fine with her pregnancy and she is due June 30. The boys are doing well and they are enjoying playing with their new go-kart. There is a governor on the go-kart so they don't drive too fast.

My mom and dad want us to move in with them so they can help us out more. Elizabeth should not be lifting me one month before her due date and two months after the baby comes. So someone needs to be close by to help move me around so Liz can concentrate on taking care of the baby. Which means me to my next topic. We are probably going to move from Queen Creek to Gilbert. Right now we are looking for a rental house in my parents Ward so they can help us with getting the kids to church. Elizabeth does not want to move in with my parents because she loves her privacy, being able to walk around the house in pajamas. Also that she loves cooking for us, cleaning for us, taking care of us and disciplining the children without an audience. I don't blame her, she just wants the place of her own.

For the last two months I have been battling a chest cold and cough that does not seem to want to go way. My lung capacity is at 60% so it is hard for me to cough up phlegm and clear my throat. It is also hard to blow my nose. My breathing capacity seems to have gotten worse from this chest cold. When I was being tested for allergies the doctor told me I was his second worst case that he's ever seen in Arizona. So I believe my allergies are playing a significant role in my lung capacity, which is probably 40 or 50% right now. I am using any by-Pap machine before I go to sleep at night to help stretch out my lungs and help me breathe. Eventually, I will have to wear it throughout the night. But right now, the system I have right now works. My voice seems to have gotten weaker. I do not know whether it's from the lingering cold or ALS. But my voice has gotten softer. And I cannot talk as loud as I used to.

My muscles seemed to be getting smaller and smaller and I am losing motor skills in my right arm. I've lost all my fine motor skills and it is very difficult to sign my name or hold a pencil. All the muscles in my body are getting tight. When I wake up in the morning I am very stiff and it takes me a while to get the blood pumping in the morning. About the only thing I can do right now is lift up my right arm a little bit to control my power chair. I can no longer move my toes or fingers on my left hand. I feel like a mix between a quadriplegic and a newborn. All of my senses are heightened and then sensitive to touch, light and sound, but with all of the emotions of an adult. My legs are getting skinny as well as my arms. And all of my body fat seems to settle around my abdomen, thighs and buttocks. So it feels like I'm getting weaker and fatter. All the calluses on my hands and feet are gone and my skin is getting very smooth like an old woman. This is frustrating to witness.

I am also losing the ability to control my emotions. I cry easily, I get upset at my kids faster, and when I start laughing it is hard to stop. I also get upset faster if something doesn't go my way or there is an itch I cannot scratch. Lately, my eyes are itchy and watery and it feels like little bugs are crawling on my face and over my body. So you can imagine how frustrating it can be not being able to scratch an itch. My brother Mitchell who is serving on a mission talks to a quadriplegic man and asked him what the biggest challenge he was faced with everyday. The man thought for a second and told him his biggest challenge and enemy every day was the common housefly. I would agree with that because when flies land on me it drives me nuts that I cannot shoo them away. :-) Here’s a funny story for you!

The other day my dad and I were crossing the street when I accidentally ran over his toes with my power chair. My dad started yelling at me to watch where I was going and I started laughing. I was laughing so hard and long that I lost control of my power chair and started driving into the middle of the intersection. At this point, my dad was very upset with me and told me to control myself and to get out of the intersection because the light was turning green. I eventually regained my composure and was able to drive out of the intersection unscathed. Thanks to a few courteous motorists who understood that a handicapped person had lost control of their power chair! :-) I can only imagine what those people were thinking as they were waiting for me to cross the street. Probably something like, "come on you retard"! Ha ha! My dad and I have a good laugh after that.

What's funny about being in a power chair is that people think you are actually more handicapped than you actually are, so I get a lot more help and sympathy from strangers that I do my own family! For an example: when I'm driving through Wal-Mart in my power chair and I accidentally run into someone, totally my fault, they will apologize to me saying that it was their fault and they should've watched where they were going. For those of you who know my personality, you know that I've played pranks and jokes on random strangers. I love laughing and joking around all the time. It's even fun to make fun of myself from time to time. Here is something random: I keep having dreams every night that I am either walking or running or doing something physically active in my dreams. I've never had a dream yet where I am in a power chair. I have a lot of cop dreams where I'm chasing someone, pointing a gun at them or arresting them. A lot of high school reenactment dreams, where I am back in high school, but with the knowledge I have now. You tell me what my dreams mean! :-)

In May, Elizabeth and I are going to the Gila Valley Temple dedication, so that will be nice to visit family and friends in Pima, Safford, Thatcher. Elizabeth told me that she feels no stress whenever she visits her mother and father. She doesn't have to worry about the kids, cooking or cleaning, and believes that her mother can just take care of everything for her. I miss the days where I could let Elizabeth take a break for the day and I can watch the kids, clean the house, and cook dinner to help her out. I miss holding my kids, throwing them in the air, jumping on the trampoline, and chasing them around. I miss working as a police officer on patrol. I miss picking up my wife and carrying her around the house and holding her.

I want to thank all my friends and family members who have showed us an outpouring of love and support while we are in the midst of our trials. I never thought that anything like this could ever happen to a young family. It amazes me how many people that I don't know come up to me introduce themselves, and tell me they know all about me and my situation and what I am going through. It strengthens my testimony when I see people I don't even know, come up to me and offer their services, advice and opinions, because it shows me the great love that our heavenly father has for us to send his children. He sends my brothers and sisters here on this earth to help strengthen, edify and sustain his children in their time of need. Prayers have been answered. Blessings have been poured out upon us. I plan to stay here and be here for my children. I plan on using every medical device to keep me alive, conscience and breathing, so I don't miss any moment of my children's lives. I plan to be there for my children and fight this disease till they find a cure or I do!
-Mark Kelly


Anonymous said...

Mark and Liz, Greetings and love from Liz's old Higley neighbor, Charlene. I'm recovering from removal of a malignant brain tumor that has stolen much of my vision and left me with a questionable life span. But at nearly 65 I have a different perspective on facing the trip through death. I figure my challenges over the next year will surely be patience and trust in the Lord. I cannot imagine your struggles, being so much younger. All I know is that God has a plan for each of us and loves us perfectly. Being human and so limited in our understanding makes it so difficult, doesn't it? I'm praying for you two and your family. Wish I could be there to help in other ways. God bless you with additional courage and strength. I heard something in the hospital that lifted me: I don't know what my life holds, but I know WHO holds my life in HIS hands. Perhaps that will comfort you as well. All my very best wishes and love! Charlene Taylor

Donna said...

Mark and Liz,
Thank you for sharing your life with all of us. I know that can be hard. I admire your honesty and I feel your strength even though I can't fully understand the pain you must experience daily. I am so thrilled for the baby that is coming to such a sweet home and to so many brothers. May God continue to bless and strengthen you.

Marty Murray said...


I sent you a couple of emails before and I am not sure if you got them.

I read a little of what is on you site and your can do attitude is part of what it takes to solve als.

I have the another ingredient, expertise.

I have been working with people for about ten to fifteen years, helping them solve challenging life problems.

After working with people to solve multiple sclerosis, I contacted someone who had been diagnosed with als, thinking that it sounded similar so maybe it would fit my skillset well.

As it turns out, solving als has been more challeging than solving ms. Still, I have found it to be totally solvable and I am getting pretty good at helping people diagnosed with als to get healthy.

I have a website at www.creatingparadise.net.

Also here are some other kickin resources.

This paragraph makes a good prologue for the rest.

"In the United States, Dr. Phuntsok observes that Western doctors are “always telling patients that they are sick or that they will not live and have no hope.” This creates fear and negative feelings, which contribute to the poisons and leads to greater illness. In Tibetan Medicine, illness is never classified as disease but rather as an imbalance that...is considered to be treatable. Patients need to hear this, he says, to be reminded to have faith in the body’s healing powers and to be reassured that they will be all right. He says he considers this his greatest obstacle in treating his Tibetan patients in the United States and that he must spend considerable amounts of time talking patients through these new “Western” anxieties and fears."

This short piece on mind body healing was written by a guy who has been conversing with me for a while.


Here is a link to an overview of Bruce Lipton's book on how biology is influenced by the environment and the mind.


This article discusses the work of Gabor Mate who has looked into how stress and the way one handles emotional issues can contribute to the development of illness, including als.


This is a video interview of Gabor Mate, which would be worth your watching three times, it is so full of ideas.


This article discusses how changing lifestyle and meditating can change what genes do.


In this article, the writer presents a conceptual framework for understanding mind body healing and discusses her path to health.


This is the link to the website of Craig Oster who is in the process of solving his als problem.


Here is a video of Craig Oster standing up unassisted for the first time in a while.


This website was created by and is managed by a person, who has essentially solved his als problem. It has hundreds of pages covering a wide variety of als related topics and has good ideas regarding solving als.


So check it all out and give me a call or drop me a line.

You can solve this and I can help.

Travvis said...

Hey Mark,

I really admire your ability to continue looking at the bright side of things; it's Christlike, to say the least. Ever since I heard about what you and your family have been going through, you all have been in my prayers often, and you will continue to be.

Much love and care,

Travvis Dahl