Gil's Story

I have been diagnosed with ALS. My name is Gil, I’m 54 years old and married to my beautiful wife for 25 years. We have two sons, 24, and 22 years old. Our youngest son is married and they have a daughter. I woke up yesterday morning/noon thinking what am I going to do today? Oh boy, my legs are really hurting and feel like they are lead weights. Yep, got to get up to take my meds. I sure need them right now. My wife knocks on the bedroom door, my mother is on the phone. She calls just about every day and I’m happy she does.
Six or seven years ago I remember playing basketball with my sons. I was never that good at this game but playing with/against my sons was always fun and I actually won a few games. I’m trying to play defense one day, I’m moving my body in front of him only my legs aren’t moving- I fall. As the months past I began to notice several stumbles and stiffness in my legs. After several doctors/tests, nothing definitive was found. I thought, I was just getting older(yipes!). A few months later I fell again, this time down the stairs to the basement floor, thankfully with no major injury. A couple neurologists and more tests later- I was told it was ALS. Finally I knew what I had but this doesn’t sound good. I was told it I had a slow progressing form of the disease. You ever feel good and yet scared at the same time?
At that time I felt some disbelief, fear, anxiety, anger, sadness, stress, etc. Later I thought, so these are the emotions of someone with a fatal disease and you really don’t understand until you’ve been there. I read a lot of information regarding the disease. I coped thinking, ”Hey, I’m still in pretty good shape, I’m not going to let this change me and burden my family. I have my faith, my family and my friends.”
Five years later in lifes journey, I’m using a cane and 4-wheeled walker to get around. I am laided off from my work and currently on temporary disability. I still drive but getting in and out of the car is the difficult. I fatigue easily, experience nausea, soreness/cramping in my muscles, take several medications, can’t sleep well, or sleep a lot. I have realized the change in my health and the probable decline I face which will or could become a burden to my family. Some days, I’m tired of feeling bad. Yes, there have been changes. Thankfully I was wrong about my thinking!
The Effect of Changes
I have ALS.
• What I did not realize is my wife has ALS. No, she doesn’t have the disease but she has me. If I’m struggling with my health she feels even more helpless. She is with me everyday and needs support as much as I do. We’re both committed to learning to adjust together. I have learned to appreciate all she has always done, even more. Really!
• My family and friends know this and want to help. I would refuse help still trying to do what I felt able. My mistake! I need their help and they need me to let them. To have friends or family visit, call or send cards is so encouraging! At first I thought it was “nice”(and it is). That said I don’t know of too many people who don’t have “busy” lives and yet, many have taken time to do these and other things for me. I am so thankful for them!
• Where would I be without all the healthcare professionals (at U of M) who are there to help as only they can? They have become an important part of my life and I am thankful for them. The ALS Association. What a wonderful resource. The Michigan Chapter in Troy has been a great support for my wife and I. Meeting and sharing with people who are going thru similar experiences is encouraging for all.
• The Lord knows this. God has been and is my(and my wife) strength! The Lords’ Church(the people) have shown me how to encourage and bless others by their wonderful example. I believe He has given me an opportunity to bless others. I have come to appreciate the simple experiences of my life. I never thought I took for granted any one I hold dear. Wrong (again)! I have come to a greater appreciation of all my family, friends, and others who face illness or injury. Instead of drowning in sorrow for myself, I remember my family and friends have their own daily struggles too.
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I have a 3 year old granddaughter, Adreanna. She knows I’m not able to do what I have in the past- chase her in the yard, carry her when she is tired, and take long walks. Yet, she still enjoys the things we can do together like read books, push her on a swing at the park, play games on the floor. If I get up without my cane, she runs to get it for me. She offers to do more than she is physically able yet understands she has limitations too. Her focus is on what I can do, not papa is sick. She does this with a wonderful smile and attitude. She is a wonderful example for me. She is my Joy!
Admittedly, I do not understand all the difficulties more typical ALS patients and caregivers courageously face each day. I’m simply saying I feel able to relate a little better with the emotions of any person who is struggling with an incurable fatal disease. I’m still learning from meeting others with severe illness. I have sometimes thought of how close to death I have often been just driving a motor vehicle. God has given me time to bless and encourage others in ways I am able, by listening, sharing, and/or just being there.
In closing, I recently “dug up” a wedding anniversary card I received from my wife a couple years ago. The cover read:
“Love is not counting the years, love is making the years count”
I tried using the word “life” in place of the word “love”. They both sound good to me!

Mary Kay's Story

My name is Mary Kay and I am a 74 year old ALS patient living in northern Michigan.



Five years ago something strange happened. It seemed as though all my friends were going deaf at the same time. No matter what I said people would ask me to repeat, sometimes more than once. I didn’t realize my speech was so slurred people could not understand what I was saying. Not long after that I noticed that my face was beginning to droop. I didn’t make a connection between the two conditions. Looking at my face I thought I had suffered a little stroke. Since I seemed in good health I didn’t give it a second thought. Next I started drooling. Again I didn’t pay any attention, thinking it was a sign of old age. It would be close to a year later before I was to learn the real cause of my symptoms. I was still not a believer, but a trip to Mayo convinced me that I did have ALS. My ALS is bulbar which makes it impossible for me to speak or swallow.



The long trip home from Mayo gave me many hours to ponder my predicament. I thought of my friend who had died of ALS twenty some years ago. He was totally paralyzed and unable to speak, lying in bed in a nursing home. That thought struck fear in my heart, and also made me realize that I had a limited time in which to finish anything important that I had not yet accomplished.



I made some decisions and wrote my final list before I reached home. I figured it was my life, my disease, and I could make my own rules. I would not dwell on ALS, nor would I talk about it constantly. If people asked me how I was doing I would say it was a good or bad day. Nothing more. I would resign from the organizations I had been involved with and spend what time I had left with my family and friends. I would get my Trust in order, finish the book I was writing, and have an elevator installed in our home. I started praying that God would keep me calm, positive and productive. I soon changed that prayer asking to be calm, positive and patient. My disease affected many people in addition to myself. Learning how to be patient with them is not always easy.



Along the way I learned some important, and often disappointing lessons.
My biggest disappointment was how little knowledge the medical community had about ALS. That set me off on a mission to educate as many people as possible. I learned that I had to be pro-active and creative. After all, this was my only body we were talking about and it was very important to educate myself, not just about the many unpleasant symptoms, but also about what equipment was available and what kinds of help was available in our part of Michigan. I built myself a network of helping people including Denise George my ALS Michigan Patient Services Coordinator, and a file of equipment information. I was ready. When it became too difficult for me to swallow I knew I needed to be fed by tube. My family and friends put together a website where they could sign up to come help feed me. I talked with my pharmacist about which pills could be ground up to go in my PEG Tube. When I reached the point that I was regurgitating the food from the tube which caused choking and aspirating I knew I needed a tracheotomy. When my muscles failed to the point that my mouth would no longer open wide enough to brush my teeth comfortably and I was unable to spit out toothpaste I started using a child size toothbrush and mouthwash. Toothpaste made way too much foam and mouthwash was easier to deal with. My educational mission for both myself and others goes on constantly.



Today my arms are beginning to weaken but my legs are strong. I am hooked up to a system twenty four hours a day that keeps my trach well humidified. Another machine is hooked up in the evening to feed me by food pump over night. I need to use a nebulizer four times a day and an airway clearance vest twice a day. Each morning and evening someone has to suction out my trach to keep my lungs clear, a job that takes about an hour and a half. It seems my life is controlled by equipment, care, and helping people.



My symptoms have gotten worse in the past five years but I try to keep my attitude the same, praying to be calm, positive and patient. Each day my life is a challenge. I like to look at it like an adventure in which I get to make my own decisions.



Back at the time I was diagnosed with ALS one of the things on my list that I wanted to accomplish was to finish the book I was writing. Having the book to work on was a real blessing for me, giving my mind a positive place to be every day so I didn’t have time to worry about my ALS. Keeping busy and positive has been a very important part of remaining in somewhat good health both physically and mentally. I did finish the book. In 433 pages Torch Lake, the History of Was-Wah-Go-Ning includes 673 maps, drawings and old photographs and a story covering 10,000 years of life in the area where I live. A major undertaking even for someone in good health. For me it was a lifetime accomplishment and a miracle.

A Letter for Washington

This letter comes from Donna Mund. It is a perfect example of how powerful individual stories are in our efforts to advocate for ALS!

Dear Honorable Congressman or Senator:

My husband Lyle Mund was diagnosed with ALS in February, 1992. It has been many years of watching a wonderful man struggle with doing what we deem to be easy and ordinary. For him the work that would take us 10 minutes can take an ALS patient an hour to do.

Lyle has endured alot over the past years. He can still do many things that a "normal" person can do. It just takes him a bit longer to achieve what he needs to do. I, as his spouse, do not try to interfere when he is doing things even though I know that he is struggling. I don't think it does him any good to treat him as if he were dying. I sometimes forget that he has this mean disease. I just treat his as I would treat any other person. He is still able to drive which is fantastic. The problems that we run into are really embarrassing for him at times. He has gone to gas stations and pumped gas and when he is done paying for it, people that are there call the police thinking that he is a drunk and that he has had one too many and should not be behind the wheen of a vehicle. He has been pulled over so many times I can't even count. He sometimes jerks the wheel when he has a muscle spasm which leads the police to pull him over thinking that indeed he is drunk driving. They ask him to step out of the car and to do a field sobriety test or breathalizer test. Lyle informs that he is not able to do the field sobriety test or the breathalizer due to his ALS. But, he will always offer to go to the police station and take a blood test that will prove that he is not drinking. He does not even drink alcohol in the first place. We are so used to it that we have the papers that legally prove he is able to drive on the roads. Lyle has to go to the secretary of state every 2 years to get a drivers road exam. He passes them every time and carries papers that show he is a responsible driver.

Lyle would do anything if someone would only give him the chance to work. Most employers are worried about the liability. He is willing to sign a waiver stating that he will not sue if he gets hurt. We think they should have something available for the handicapped in the area to do for work. Something structured around handicapped needs. He contacted Michigan Works and was invited to come to a workshop that would help him to find a job. They told him of the success rates that they have. When he got there, they tried to help him build a resume. That is all they had to offer. It is very hard to build a resume for a person who has not worked for 20 years. He only wants someone to look past his disability and to see his ability.

We once went to the Department of Human Services to try to get food stamps. We were denied. They had the nerve to tell Lyle to divorce me and then he could get all the help that he needed. We consider this an insult. We now go to food pantries for food. At least they don't tell us to get a divorce. We do not believe in divorce and think it ludicrous for someone to suggest it in order for us to get a little help. We did not even get a raise on his social security this year. He only makes 632.00 per month on social security. As you can see, we are not rich by any means. Also, that 250.00 that the government gave to us last year as his incentive was deducted from our income taxes. We got the double whammy. Thank you for this. There are some months when Lyle has needs that our finances can not cover and then we have to make the choice of paying the utilities or getting what he needs. I can tell you that his needs come first. I have had to juggle things for many years and will continue to do so, but it would be nice to have the government stand behind the people who are the forgotten ones who suffer from terminal illnesses and their families who choose to stand by their side until the very end. I am one of the people who will be here no matter what and consider it a priviledge to take care of someone who is so special and dear to me.

In closing, I am praying that you will read this letter from me knowing that we are your constituents and we also have a voice. We are voters and will let our voices be heard. I want to know that my senators and congressmen care about what is going on in my home and in the homes of other people who suffer these terrible illnesses that can only have one tragic ending. The loss of a person due to not being able to find a cure. I hope that you will consider finding funding for research. We could use that. That is the only way that we can conquer this disease. I will continue the fight for the rights of people with any sort of handicap and to remind all that they are citizens of this great country just like you and I are.

Thank you for your time and I hope that my one little voice will be heard loud and clear in the halls of Congress in Washington, DC.

Sincerely,
Lyle and Donna Mund

Brian's Story

– YouTube viewers usually visit the site to watch the latest Lady Gaga video or to see the recently documented gaffes courtesy of celebrities and other public figures. However, Brian Schnurstein has utilized this forum to educate people about ALS (amyotrophic lateral sclerosis), the progressive neurodegenerative muscular disease he was diagnosed with in March 2010.
“Imagine (a film about ALS),” the title of Schnurstein’s 13-plus minute video, chronicles the important moments of his life and also informs its viewers how he plans to confront ALS, otherwise known as Lou Gehrig’s Disease. For his role in raising public awareness about this disease, The ALS Association’s Michigan Chapter recognizes Schnurstein along with his wife and primary caregiver Lindsay and their daughter, Kylie, a toddler, for exemplifying the spirit of “ALS Across America” during May, which is ALS Awareness Month.
The “ALS Across America” national campaign honors people fighting ALS and their caregivers as role models. These individuals inspire The Association and the ALS community as they make a positive difference by spreading awareness about ALS and by living their lives to the fullest. People with ALS typically have a survival rate of two to five years from the time of their diagnoses.
“Imagine (a film about ALS)” showcases photographs from Schnurstein’s wedding and his daughter’s birth and uses well-known songs, including John Lennon’s piano ballad “Imagine,” to convey the mood of the images shown on screen. The video asks its observers to “Imagine living a good life” or “Imagine taking a battery of tests” to uncover an illness. This poignant yet compelling piece also features footage from baseball legend Lou Gehrig, and it illustrates how Schnurstein believes a cure for the ALS does exist. Since its release in February 2011, more than 1,100 people have viewed the video.

“The video is emotional, but more importantly, it is educational. Its viewers see and learn about ALS and how the disease attacks the nerves and eventually paralyzes the entire body,” says the chapter’s executive director Stacey Orsted. “Viewers also get a better understanding of how physically limiting ALS is. The video has an inspirational ending, indicative of how Brian has inspired this chapter and us all.” To watch “Imagine (a film about ALS),” click http://www.youtube.com/watch?v=vwOcDTlf058.

Aside from creating this video, Schnurstein, 30, has worked closely with the chapter in raising awareness about Lou Gehrig’s Disease through several fundraising ventures involving his family, friends and co-workers. More than 100 people participated in the chapter’s annual Walk to Defeat ALS® in his hometown of Portage in September of 2010. These individuals who were members of Schnurstein’s Walk team, dubbed “Brian’s Bullpen,” raised more than $10,000 that went toward research and patient services programs for the chapter.

Other events that raised funds and awareness for ALS have included a golf outing which occurred in the summer of 2010 that involved dinner, entertainment, a raffle, and a silent auction and a fundraiser at a local restaurant that Schnurstein’s associates from his workplace Stryker organized for him in the fall of that year. Both events respectively raised $75,000 and upwards of $12,000.

As part of ALS Awareness Month, The ALS Association hosts the National ALS Advocacy Day and Public Policy Conference in Washington, D.C. May 8-10. The conference is the single largest gathering of the ALS community and empowers people with ALS and their families with the ability to play an active role in advocating for a treatment and cure. This outreach to Members of Congress has helped to achieve many significant victories for people with ALS from waiving the 24-month Medicare waiting period for people with ALS to improving benefits for military veterans with the disease, who are twice as likely to develop ALS as the general public. The conference also helped lead to the establishment of a Nationwide ALS Registry and has more than quadrupled annual government funding for ALS research. The Association encourages people with ALS to enroll in the National Registry; visit http://www.alsa.org/als-care/als-registry to find out how.

According to Orsted, Schnurstein, Lindsay and Kylie along with Schnurstein’s parents Ray and Wendy and his older brother Steve will attend this event to advocate for people with ALS in the nation’s capital with other members of the ALS community. As constituents of the State of Michigan, they are eager to personally share Schnurstein’s story with Rep. Fred Upton (R-MI 6th District), who is Chairman of the House Energy and Commerce Committee, which has jurisdiction over health care issues that impact people with ALS.

The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

ALS Awareness Month is Here!

Today marks the beginning of ALS Awareness Month. Another year has gone by in our battle against ALS. Even with all we have accomplished this year, this month always seems to remind me of how much is left to do.

This month The ALS Association, Michigan Chapter will be posting the stories of our PALS each day. We hope that it will serve as a reminder to all that we must never tire in our advocacy for those affected by this terrible disease. We will be asking that anyone willing please send us their story and a photo so that we may share these not only on this blog, but during our visit to Washington DC next weekend. Members of our staff and volunteers will be meeting with Michigan Senators and Congressmen to ask for their continued support for the National ALS Registry and for $15 million dollars in funding for ALS research through the Department of Defense. Please consider helping us in our efforts by sharing your ALS journey. You don't have to be a PALS to write a story. Everyone who has had their life affected by this disease is welcome to contribute.

I know that asking others to share this often emotional story can be difficult, so I thought I would start this month of stories with why I am an ALS Advocate and how my life has been impacted by Lou Gehrig's disease. My dear friend, Regis Kleiss, is just 27 years old. He has had ALS for 3 years.

I met Regis while we were still in high school. He was an extraordinary athlete and the picture of health. He was an active, strong young man who hoped to be a mechanic. We have remained friends through the years, and I have been witness to Regis's battle with ALS.

Last night, I attended Regis's birthday party. I bent beside his power wheelchair to listen to his quiet voice and helped him to eat his meal. I gathered with 20 other members of his family and friends to celebrate in his honor. Despite being contained in his chair, Regis beamed. His vibrant spirit transcends his disease. And though it broke my heart that he could not clap along with the music with the rest of us or sing along with band, his demeanor renewed my dedication to what I do.

I will participate in ALS Advocacy this month for Regis and for every other PALS and family I have the honor of working with on a daily basis. Thank you, Regis, for allowing me to share your story and to advocate on your behalf. I know someday we will find a cure!