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!
Wednesday, April 14, 2010
Posted by Elizabeth at 5:39 PM
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.
Posted by Elizabeth at 6:33 PM
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.
Posted by Elizabeth at 9:37 PM
Thursday, November 12, 2009
Yes we are still here. I haven't forgotten about the blog, but I have had a lot on my mind lately. Where to begin. Mark went hunting with his family last weekend and had a great time. Our bro-in-law, Wes shot a really nice buck so it turned out to be a successful trip. I guess the next elk hunt coming up falls over Thanksgiving weekend so I may be spending it in Pima with my parents. Mom, save me a bed please. Most of you have probably heard by now but a few weeks ago I discovered that I am expecting a baby. Yes, this makes five, and yes, this was a surprise. I am both joyful and afraid and amazed that the Lord would see fit to send me yet another sweet spirit to look after. I am also really sick. This has never happened to me before, and I have sisters who get so much sicker than I am with every pregnancy, so I am not complaining. But it adds another bump in the road for us. One that I know we will look back on as only a blessing.
Mark is hopefully getting a new wheelchair on Monday, along with a bunch of other equipment we have been needing but didn't know about. The power chair he has been using has been so vital to Mark in just getting around and going places, but it is really built for, as Mark puts it "an old lady", and it's definitely time for him to get a chair that fits him and doesn't make his joints ache and his feet swell. The ALS association has been extremely helpful in getting him what he needs and so far has been good about getting back to him and following through with everything. It is getting harder for Mark to stand up out of his chair and it will help to have one that rises up and is taller to begin with.
Other than that things are going along somewhat normally. Football season is over so we all have a lot more time to lay around and Bryce is so happy to eat breakfast on Saturdays and not worry about making weight. Next year he will be in the older division and won't have to be such a slave to the scale. He's far too young to be even thinking about how much he weighs anyway. I am still using essential oils on Mark and trying to eat healthy. It is hard sometimes because I feel so wretched but hopefully it won't last long. Mark is a really good sport about it. He has always been so nice to me when I am feeling like crap (and acting like it too I'm afraid). He still is really good about getting the kids to help out and clean things up for me.
Posted by Elizabeth at 10:07 AM
Friday, September 11, 2009
On March 30, 1981, Reagan, along with his press secretary James Brady and two others, were shot by a would-be assassin, John Hinckley, Jr. Missing Reagan’s heart by less than one inch, the bullet instead pierced his left lung. He began coughing up blood in the limousine and was rushed to George Washington University Hospital, where it was determined that his lung had collapsed; he endured emergency surgery to remove the bullet. In the operating room, Reagan joked to the surgeons, "I hope you're all Republicans!" Though they were not, Joseph Giordano replied, "Today, Mr. President, we're all Republicans."
The bullet was removed and the surgery was deemed a success. It was later determined, however, that the president's life had been in serious danger due to rapid blood loss and severe breathing difficulties. He was able to turn the grave situation into a more light-hearted one, though, for when Nancy Reagan came to see him he told her, "Honey, I forgot to duck".
The president was released from the hospital on April 11 and recovered relatively quickly, becoming the first serving U.S. President to survive being shot in an assassination attempt. The attempt had great influence on Reagan's popularity; polls indicated his approval rating to be around 73%. Reagan believed that God had spared his life so that he may go on to fulfill a greater purpose.
Every day we are faced with several challenges. How we respond and react to those challenges shows what kind person we are. Some people tell me that this disease is "not fair", some people react to my ALS as if I am a "DEAD MAN WALKING". I do not believe this and plan to Fight this disease till I die of old age or they find a cure! :)
I believe that God gives us trials in our lives to see how we and the people around us will react to it. Ask yourself...... How are you dealing with a challenge you are facing in your own life? Are you passing the trials God has placed before you? Is God happy with all of your family relationships? If not, change your life and live each day as if it were your last. Hug your family and friends, kiss and hold your spouse longer, spend quality time with your children, forgive everyone of every thing and forget it happened, right the wrongs in your life, repent, go to church, live your life instead of just going through the motions, and serve people. The more I would Serve in my personal and professional life, the better I would feel at the end of the day knowing that I had helped someone in need. Once a day, do something special for someone you know.
We must focus on what's most important in this life......FAMILY! Take care of them, love them, hold them, cherish them. Any day could be yours or their last day on earth. Treat everyone and talk to everyone as if it were your last day on earth. Your family is all you have....nothing else matters. Satan tries to destroy the family and cause contention. He uses all forms of deceit and trickery to damage family relationships. Satan knows all of us personally and knows which one of our buttons to push to set us off. Such as.... family differences in religious views, political views, Government, education, pet peeves and personal beliefs. All of those things really don't matter compared to family and most of those items change daily. If Satan has caused contention in your family, than he has already started putting a wedge between you and your family members. Don't let this happen or stop it from happening.
This was longer than I expected it to be so I will finish. People ask me how I am so positive during all this. I just say, "How else can I be? Mad or Sad? No one would want to be around me!" :) We must find the ability in all of us to turn a grave situation into a more light-hearted one like Ronald Reagan. Whether you are in my Family, my Police Family, or my friend.....I am your brother and I love you!! Thank you for all of your thoughts, prayers, love and support to me and my family while we continue the fight.
~Mark D. Kelly
Posted by Elizabeth at 4:38 PM
Thursday, September 3, 2009
This post comes from Mark's mother, Carla Kelly. She usually does a much better job of keeping everybody informed. Thanks Carla. We love you.
Sometimes when you get promptings, you really should listen. For the past 3 days I have thought that I needed to call Dietmar. (Mike's Dad) When I called him the day before yesterday, I told him about Mark's condition.
Mark is having lots of difficulty walking and getting up from a seated position. He tries to get up on his own and when he can't, he will finally say, "Well, I can't get up" and then we assist him.
Well, long story short, Dietmar told us that he had Joan's electric wheelchair just sitting in the garage and getting no use at all. He offered it to us and we jumped at the offer. Julia drove to Vegas yesterday and picked it up. Mike took it to the wheelchair store, they put a new battery in it, adjusted it for Mark and VOILE! An awesome new set of wheels for Mark! :) This blessing came to us at the perfect time. We knew that Mark was close to needing it, and he and Mike were looking at 4X4 wheelchairs. Very cool, but very expensive. Now for the funny part of the story.
Let me first say that Mark had a ramp put on the back of the mini van to haul it around and Mike bought ramps so that Mark can easily drive into the house and office.
Of course Mark acted like he had a new toy. He was spinning in circles with it, driving around my house messing up all the rugs and just generally acting like a kid with a new remote control car or something. I got out my video camera, and as luck would have it I did not have it on when Mark decided to speed up the ramp on the back of the mini van. He was on a bad angle going up the ramp (did I mention too fast?) and before Wes and I could blink and react, he had that wheelchair tipping sideways and off he and the wheelchair went off the ramp. (then I turned on my video camera) Dang it, I could have made the funniest videos show! Of course Mark was laughing his head off and Wes and I were scared to death!
Wes picked him up off the ground and we saw that no damage was done. Then I went into Mom mode and had to say, "Well, let that be a lesson to you." Crazy kid.
Mark is still continuing to deteriorate. We pray for the stage to come when this thing slows down or stops completely. We know that he is in your prayers and that is all we can ask. We are asking for more time from the Lord and even a healing, if that is in Heavenly Father's plan. We are doing all we know how to be worthy of this great blessing.
I called Mark this evening at Bryce's Pop Warner football practice. Mark has not been going to the practices because it is too hard on him to walk so far. He said the new wheelchair was awesome and went over all the terrain with no problem at the school. He was doing what he loved, watching his boy play football. These are the things that memories are made of. I will write again when Mark has his Barrow's appointment on the 18th. Until then, and thank you so much for your love and support, Carla Kelly
PS: Feel free to pass this on, or reply to this email.
Posted by Elizabeth at 8:29 PM
Monday, August 17, 2009
I have started this post about ten times in the last two weeks, and I keep getting distracted. In fact right now I have a little person needing my attention.....
Ok- yes, it seems all of the sudden life has gotten busy for us. After a summer of going back and forth about it, I finally decided to put the kids back in school. Things are just too crazy right now for homeschool, and I'm afraid I don't handle the extra stress too well. I have a hard time trusting my kids with anybody else, but they are adjusting pretty well so far. I have to think back on the school I went to- and still turned out ok- and just tell myself they'll be fine. So here is a classic shot of Bryce at football practice- looking at me instead of the coach. It is times like this I am so happy to be sitting on the sidelines watching someone else teach him a little discipline. Not that he's a bad kid, but I'll see him not paying attention or just playing around with another kid and the coach makes them both run a lap. It is very satisfying.
Football practice every night has been difficult on the little ones. It is hard for Mark to go with Bryce because of the heat, and he has to either sit in the dugout where it is hard to see, or stand next to the fence and he gets pretty tired. Most of the parents bring camping chairs but those are too difficult for him to get out of once he is sitting down. So it's up to me to go to football practice every day. I'm finally learning the game and it is fun to watch Bryce work his butt off for two hours, but I miss my little guys while I am gone.
We spent this last weekend visiting my parents in the Gila valley. They moved back to their hometown about a year ago and have never been happier. I didn't think I could bear it if they moved away from the house I grew up in. But they did, and I can. When we go and visit, their little house still feels like home to me. They have a circular sidewalk in their front yard where the kids love to ride bikes, and a big front porch that is perfect for being lazy on. And of course, lots of flower pots and trees and gardens. Can you tell I love it there?
We also drove up Mt. Graham and had a BBQ with my parents, my sister and a few of her kids. So much fun. I loved seeing my boys climb all over the rocks I used to play on as a child. It was really cool and beautiful and a perfect afternoon. I did spend most of my time keeping Bryan out of the campfire and putting his shoes back on, but it was nice anyway. We found a nice spot that was pretty level for Mark to walk on. He has to be careful not to lose his footing and fall down, and always walks with his walking stick.
Here is Harley (named after his great grandfather) and my dad. He has made a miraculous recovery from his car accident in March. He broke his neck and had surgery to replace two vertebrae and fasten a plate to keep them together. He had a fabulous doctor, and my mom takes very good care of him. He says his fingers and toes still tingle on one side, as the nerves are still healing. It is amazing what modern medicine can do, and I am so grateful to have him with us for many more years. It is partly because of my dad that I have such hopes of healing Mark. I know it may take some time, but I know it is possible.
Posted by Elizabeth at 2:26 PM