Featured Family: Eric Fox

VICTORY THIS WEEK!
Victory! Senate Passes the ALS Registry Act, the United States Senate passed the ALS Registry Act!! Thanks to your outreach, we have just won a huge victory for people with ALS and their families across the country. We have made a difference! The bill now heads to the House, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. We will keep you updated as the bill moves toward enactment into law. Also, It's Official!!!VA to Grant Benefits to All Veterans with ALS
We did it! Tomorrow, September 23, the Veterans Administration will publish regulations officially establishing ALS as a service connected disease! Effective immediately, all veterans with ALS will now have access to the highest level of VA benefits without having to prove that their disease was caused by service in the military. This is a tremendous victory for all veterans and is the culmination of years of work by The Association, our VA Issue Team and veterans across the country. It is clear that our outreach - testifying before Congress, partnering with the VA, advancing research to identify the connections between ALS and military service and educating the public about this issue - have paid off. The Association has championed legislation (H.R. 5454) that would have established ALS as a service connected disease. However, thanks to our efforts at Advocacy Day and throughout the year, this legislation no longer is needed! ALL Veterans with ALS Eligible for Benefits This new policy means that ALL veterans with ALS will receive the benefits they need, deserve and have earned. Importantly, it is broad in scope and applies to all veterans diagnosed with ALS regardless of when or where they served and regardless of when they were diagnosed with the disease following service in the military. A summary of the regulation can be found here. The text of the regulation is available here.Tomorrow and in the coming days, The ALS Association will post additional information about the regulation, including answers to frequently asked questions, an overview of benefits available to veterans with ALS, as well as guidance veterans can use to obtain service connected veterans benefits.The ALS Association would like to thank VA Secretary James Peake, Congressman Henry Brown (R-SC) and Senator Lindsey Graham (R-SC) for their efforts to work with us and the ALS community in support of veterans across the country. We also would like to thank all veterans with ALS whose outreach to Congress has helped make this important benefit possible.Additional information will be available on our website on September 23. If you have any questions, please do not hesitate to contact the Advocacy Department at advocacy@alsa-national.org.
Congratulations to everyone!

Featured Family: Barb

When I was a little girl I would watch “The Love Boat” every Saturday night with my parents. I would fantasize and think that it would be so cool to be treated like royalty and everyone pampering me.........and now here it is years later and I am sailing on “The Love Boat.” Though it is very different than the one I anticipated, it has been quite a ride.

You see, in 2001, I was diagnosed with ALS. I was 56 yrs old and filled with hopes and dreams as a wife, a mom and a grandma. Our family was devastated by the diagnosis. I would much rather be sailing in the ocean basking in the sun, running around checking out touristy things and eating all that good food; but that was not to be. Instead my ship is my disease and my captain’s chair is my wheel chair. I could explain how we dealt with the devastating news when I was diagnosed or all the everyday feelings I have dealing with ALS, but I would much rather take this opportunity to tell you about my “Love Boat” staff. Only by the grace of God and the support of my “Love Boat” Staff have I been able to not only weather the storms of this devastating terminal disease but also to still enjoy the wonder and goodness of life.

My “Love Boat” staff is the best. It consists of my husband, children, grandchildren, family, friends and church. Not every day is smooth sailing, we encounter rough seas and high winds, but we also see some beautiful sunrises and sunsets. My husband Cecil is my first mate and major caregiver. He has retired early to help me with my daily care. I have my own personal attendant, personal shopper, personal trainer, personal handy man, personal chef and personal companion. He is my legs, arms, teacher, encourager and supporter physically, mentally and spiritually. He is a very, very patient person. I am not. I guess God had this all planned out when we married and I am so thankful for that. I lean on him and he is always there for me. There is no one like him. I repeat, there is no one like him. My crew is our children who also play a vital role. They encourage us and are always willing to help out.....phone calls, food, housecleaning, yard work, building ramps, praying for us and their faithful visits. My entertainers are my grandchildren ages 3 - 12 who each do their part in their own small way...pushing my wheelchair, giving us hugs, making us laugh, combing my hair, reading me books and coloring pictures for me. My deckhands are our family, friends and church who offer care and support to both me and Cecil. Our family, pastor, friends and church community support us through prayer, meals prepared and visits. Everyone is so willing to help and makes us feel so loved and blessed. It is often very humbling and hard to accept all of this help but I thank God daily for placing my “Love Boat” staff in my life.

Every day I think of this verse "This is the day that the Lord has made...Let us rejoice and be glad in it." While I do not know what each day will bring, I do know who is in control each and every day. God is my Love Boat Anchor!!! He is the one who has provided my "Love Boat" staff here on earth. As my family and I struggle with everyday situations we are learning to put our trust in God. There are many days I fall short of that trust. But I am learning to "let go" of my personal pride, my fears, my life and entrust it to my heavenly Father. Indeed, He will never leave or forsake us. We are learning to lean on and depend on Him daily and "Let it go" and give it all to God.

There will be a day when my "Love Boat" will dock. I am ready for that day. I will rejoice on the day when there will be no more sorrow, no more sickness and I will meet my Savior face to face.....what a day that will be. But, for now I keep sailing along, keeping my eyes focused on the final journey, and enjoying each and every moment that I have with my "Love Boat" staff. I treasure the song,

"You raise me up, so I can stand on Mountains.
You raise me up, to walk on stormy seas.
I am strong, when I am on your shoulders.
You raise me up...to more than I can be."

Whenever I hear it I'm reminded of all my caregivers. You are the ones who God uses to raise me up. Everyday you are there for me to help me stand and walk, to keep my spirits lifted and give me strength to face the day. My God, my husband, my children, my grandchildren, my family, my friends and my church, thanks for treating me like royalty and pampering me. Thanks for being my "Love Boat" staff!!! I love you!

Barbara Harkema

Featured Family: The Noeskes

Thank you to Todd & Keri Noeske who were willing to share their story!


In February of 2003 my mother began having problems with balance and moving her legs. She could not walk down a wheelchair ramp. The doctors began doing tests. As they did more and more tests (too numerous to recount) they were painstakingly working their way toward a diagnosis. A diagnosis that can be made only by ruling out every other possible diagnosis. She was diagnosed with ALS in the spring of 2003 which was then confirmed after she spent a week at the Mayo Clinic undergoing the same tests and more in August of that year. Our family was introduced to a new world of possibilities for the future. Where we had spent the previous fall looking at 5th wheel campers and talking about retirement plans with my parents, now we were trying to figure out where to put a wheelchair ramp and how to get in and out of the brand new Ford F-150 they had just bought to pull that 5th wheel in a few years. Decisions for the future became a frequent topic of conversations. Decisions like never being placed on a ventilator or not performing CPR if a life threatening emergency happened. My wife and I also had to make some decisions, what kind of impact could we have on the lives of my parents over the next few years. My wife had just started nursing school, we had been married for a year and a half and my son was turning 5 years old, starting school himself. We chose to do whatever it took to be a part of their lives as often as possible and support them with any decisions that had to be made. We also made a very important decision that has shaped the rest of our lives as we learned the life expectancy for someone with ALS is 2-5 years, time for more children so they can have some time with their Nana. We did not have our other children because my mom was sick, we had them so she could be as much a part of their lives as possible. We hoped and prayed that time would be long and they would have memories of her but we also knew that it might be short.

We never found the magic wand that made the experience easier, it's not there. We struggled to respect the wishes of my mom and that was to remain at home. My dad continued to work full time. After a hospitalization for blood clots in the lungs that lasted from before Thanksgiving until the New Year, my mom was not the same. She could no longer pull herself to a standing position and walk to the bathroom. My dad would come home on breaks and at lunch to help her to the bathroom. We hired a caregiver for over a year to help alleviate that strain during the day. Where one strain was alleviated, another was born. A caregiver was a blessing, paying her was a curse. Of course we did not have handicapped accessible anything in the home, so remodeling a porch into a bathroom was the next step. Then when she could no longer sleep in her bed, a hospital bed was moved into the living room. My dad slept on a bed pushed right up to the side of that bed and they always made sure to share the covers. A ramp into the yard made going outside easy during those beautiful summer months. We were lucky to have assistance from the ALS Association who seemed to know so much more about ALS than we did...They gave us a mechanical lift, helped with appropriate wheelchairs and so much more support. We still needed to care for my mom at home though, that is where she wanted to stay.

Over the first year of Josh's life, my mom continued to live with the disease and we spent more time than I can remember on that route from Kalamazoo to Jenison, Josh probably could have driven it. As she continued to fight and my wife moved through her second year of nursing school, we decided that it was time for that third child. We wanted to give her that dark-haired granddaughter she had always wanted. We wanted her to be able to hold another grandbaby and have pictures of her with that one too if possible. We also wanted to be able to share her name with that child. She would not make it to that third grandchild's birth but at least she was able to laugh with us that God had it in for my wife and it would be another boy coming along. She named that angel before he was born and his memory of his Nana is that she named him and their initials are the same.

As the summer of 2005 approached, my mom was no longer able to talk with us, but it was amazing how she could still tell us exactly what she needed with her eyes or her lips. We would spend 30-40 minutes at night positioning her hands, her legs, her neck...everything. There were pillows specifically for her right arm and ones specifically for her left. There were blankets for behind her head and a hand towel for just a little extra height behind her neck. She went to bed after 9pm on Tuesdays but had to be in bed and comfortable by 8pm on Wednesdays because we could not miss American Idol. Our family has a special place in our hearts for Carrie Underwood from that year, we have never been able to watch it since then.

My mom passed away from ALS at home with my dad at her side on June 7th, 2005. My son had his first birthday 3 days earlier. Could we have done things better or different during that time? Maybe, but we had no idea what we were supposed to do, we just did what we could do. Do we wish everyday that my mom was still here to enjoy these wonderful children and be their Nana? Absolutely. As much as my wife and I have tried to figure out a way to change the past, we cannot. So, we accept our reality of having lost a very special and strong woman to a disease way too early in life. Now we hope to help others affected by ALS by promoting awareness of the disease and pushing for legislation to allow the extent of research necessary not only to cure this disease but to understand it. When people hear the name ALS, we want them to have hope for the future by being able to offer them a cure. Right now ALS can be pretty hopeless for people. I still cringe when I hear of more people affected because I know the suffering, fear and hopelessness. I also know that with a continued rise in awareness and a push for support that we can bring hope to so many, it has happened with other diseases thought impossible and it will happen with ALS.

We had been through a tremendous loss and even two and a half years to prepare for it is not enough. The most important part of surviving the loss of my mom to ALS is the strength of my family throughout. Family members have to remain together and strong, they need one another during that time. The burden of caring for someone with ALS is too great for any one person, allow family members and friends in to help. Family members and friends, never hesitate to insist on helping and taking away some of the responsibility of the care. My dad would never have stopped caring for my mom, but by insisting on being there the rest of the family was able to spend time with that very special woman as often as possible.

Augmentative Communication Technology Seminar in Royal Oak

Please join us on Thursday May 20th at the Royal Oak Public Library at 2222 E. Eleven Mile Road, Royal Oak 48067, for an Augmentative Communication Technology Seminar, featuring Kelly Petri of Dynavox and Artie Knack, Speech and Language Pathologist for Henry Ford. The session will begin at 6:30pm and there will be time for questions afterwards. Please RSVP to Kristen at 248-680-6540 if you are able to join us.

PLEASE JOIN US BY ATTENDING OUR EDUCATIONAL CONFERENCE
May 19, 2010
6:30PM – 8:00PM
MARY FREE BED REHABILITATION HOSPITAL
Please RSVP to Denise George, RN Patient Services Coordinator if you are able to join us. There is no cost and everyone is welcome.
616-459-1900
denise@alsa-michigan.org

Augmentative Communication Technology
Presented by: DynaVox
Joel Allchin, M.A. CCC-SLP Sales Consultant – Northern Michigan
Please join us for this free presentation presented by Joel Allchin from DynaVox. If you or a loved one has been diagnosed with ALS, then you know how difficult it can be to stay engaged with the world around you when your speech and communication becomes impaired. Joel will be discussing and presenting all of the different communication assistive devices that are available and allow better communication for people with ALS.

Featured Family: Donna & Lyle

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.

Featured Family: Regis

Regis is a 26 year old man currently fighting ALS. He has been kind enough to share this wonderful poem that he wrote about his experience.



What am I truely feeling?
the lose of the muscles
from my neck down to my toes
my grip weaking day by day
as my dexterity
slowly starts to slip away
the strugglin to breath
when even the smallest odors wanders by
the voice that now fights
just to be heard or understood
my mammoth legs
that once lifted the back end of a car
have now been redused
to barely bein able
to lift my own weight
using a walker or worse the wheelchair
where ever i want to go
hearing day in and day out
that someone should take my car keys
and strip my last form of independence away
the knowing i can no longer be the strong friend
at least in the physical state
but i never truly understood
what being a strong person really means
i have people look at me
and in the truest deepest most meaningful way possible
tell me im the strongest person they know
how can i be?
inside im breaking and falling deeper
deeper into myself
I feel the pain of my pride,
slowly drifting away from me
The life I am now forced to lead,
Seeing my world in a different light,
how do I ever overcome this endless night?
knowing I now have to fight just to live,
a fight in Which I can never stop swinging
hitting as hard as i can to prolong the inevitable
and when im around friends and family
it is a battle i never fear ill lose
but yet when im alone
as i sit and think to myself
before i drift off to dream
i always look down on my life
and it is in this moment
i find i am at my weakest
its when my tears truely start to fall
I can't fully bring myself to believe
that this is the life i have been delt
all the good ive done
and all the people ive help
its truely unreal to sit here and think
that a year ago i was completely untouchable
ready for anything and everything
knowing i had the world in my hands
and now i have to plan my every move
where im going
who im meeting
what im doing
will i be able to even participate in what we do
wheelchair or walker
will i even be able to get into the building
what will i sit on
the stress i go threw worrying
makes me rethink most of my life and what i do
And no one can truely understand the way I feel,
or what im dealing with
and the friends i keep losin,
I really haven't forgottin,
the love i have lost and the love thats still there,
but in all this sadness
and all the pain i am now faced with
i do have many people
that are standing firmly by my side
people that Im so lucky to have,
the people I really do love and trust,
They give me the strenght to carry on,
and bring me back when my mind is gone.
they Pull me up whenever I'm down,
and give me a place when im truely turned around.
The world has shown me where I need to stand,
and the road i must now walk down
but I now know down deep in my heart
that i can't handle everything with just my one hand.
So I thank God for all the love in my life,
And I can only pray
for the people i need,
the many people who love and treasure my friendship,
to always hold me and keep me strong
My thought's and prayers always turn to them,
for they have life just as hard as i do
to stand by and watch me fight
knowing there is little they can do
to ease my pain and my strife
No longer do I feel all alone on my sinking ship.
i feel love loveing hands
the hands that hold my heavy head up
the hands that are there with the light touch
not to help to much
but to give me ability to stare this right in the face
and makeing me see
the happiness that my world still holds
and that my life is not ending
but more starting a new beginning
another whole new chapter
for me to learn and adapt to
and slow down
to take in the beauty of the world
and make the most
of all the time that i have left.

- By Regis Kleiss, 26 years old. Has had ALS for 2 years.

ALSA Advocacy Day in Washington DC

We just returned from an exciting three days in Washington DC for ALS Advocacy. Advocates from across the country met with members of congress and told their ALS story and urged them to join us as champions against Lou Gehrig’s Disease.
The first priority included appropriating $10 million to continue the National ALS Registry at the Centers for Disease Control and Prevention.
The Administration and Congress made the establishment of a national ALS patient registry a top priority through the enactment of the ALS Registry Act in 2008 and by appropriating funding to develop and implement the registry, including $6 million in FY 2010. These actions have enabled the CDC/ATSDR to launch the first phase of the registry, including creating a national ALS registry website that is expected to enroll patients with ALS beginning in 2010. When fully operational the registry will identify, for the first time, the number of cases of ALS in the U.S. and collect data that is urgently needed to help find the causes of the disease and how it can be treated, prevented and, ultimately, cured.
However, increased funding is necessary in FY 201 1 to fully implement the registry, allow people with ALS across the country to self enroll in the registry and enable the CDC to coordinate with other federal agencies to identify ALS cases in all 50 states through existing databases. Moreover, funding will facilitate the implementation of strategies that ensure the registry captures ALS cases in rural and urban underserved areas. These steps are vital elements of implementing the ALS Registry Act and fulfilling the promise of the registry to advance public health initiatives, epidemiologic studies, and research into biomarkers, risk factors, and clinical studies that identify new treatments for the disease.
The second priority was to appropriate $15 million to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD).

Studies supported by the DOD, Department of Veterans Affairs, Harvard University and the Institute of Medicine among others repeatedly have found that military veterans, regardless of branch or era of service, are approximately twice as likely to die from Lou Gehrig's Disease as those who have not served in the military. These findings were most recently confirmed by a September 2009 study funded by the VA and the National Institutes of Health.
In order to support our nation's military heroes in the fight against ALS, Congress and the Department of Defense established the ALS Research Program in FY 2007. Unlike many other research programs, which focus on basic science, the ALSRP is promoting translational research and is specifically designed to find new treatments for ALS, a disease for which an effective treatment currently does not exist. The ALSRP also is funding the best science as funding is provided on a competitive grant basis and projects are peer reviewed. While Congress has continued to appropriate funding for the ALSRP, including $7.5 million in FY 2010, the current funding level will only be able to support approximately 3 to 4 projects. Yet over 90 were submitted to the program in FY 2009. As a result, under the current level more than 95% of submitted projects will not receive funding. Opportunities to discover and deliver a treatment to veterans will be lost, leaving them - and all people living with the disease - with no effective treatment option. By appropriating $15 million for the ALSRP in FY2011, Congress can continue this vital program and take steps to ensure that our nation continues to fight for our veterans just as they fought for us.
We delivered and shared PALS and CALS stories at each meeting, this personal touch brought a human factor and urgency to our efforts. A heatfelt thanks to all who shared stories!

Featured Family: Al & Wendy

This morning we thank Wendy Brookhouse for sharing her experience of watching her father battle ALS. Thank you Wendy and Al for creating awareness by sharing your story!

Since April 2007, my dad, Al Widiger, has been battling the effects of ALS. Three years after diagnosis, he is now using Hospice care to provide support and strength. He can no longer ambulate more than a few steps, he relies on a wheelchair for mobility. He is able to talk between struggling breaths, nows read electronically using his "Kindle", and, while it takes time and effort, still enjoys a good steak every now and then.

In true fashion, my father remains positive and focused on living for the present. Recently side effects of the morphine he now takes left him bed ridden and too weak to perform many 'simple' tasks. As I fed dad dinner in bed, he paused after each bite to catch his breath and swallow. After a few minutes he stated, "great food, I gotta tell my friend's about this place".

There are times I wonder how hard it must be to live in his shoes. I take for granted so many things in my daily life. It's during simple acts like feeding him dinner that my dad took a moment to enjoy the situation, regardless of circumstance. After 35 years, I realize my dad continues to teach me how to live, regardless of how easy it may be.

Featured Family: Gerry & Joe

Today we thank Mr. Gerry Severin for sharing with us his experiences with his friend Joe Caisse as he battled ALS.

Joe Caisse from Gladwin Michigan died on march 21st 2010 of ALS. I was Joe's friend all of our lives. Born and raised next door to each other we were shared everything always doing everything together. In July of2008 Joe was told he had ALS. We were devastated but knew we were going to fight a battle together, and we did. What we did not know is we never had a chance. We realized this after about 1 year and saw what the illness was doing to his whole body.

The site of this was very hard to watch. We tried experiment drugs at John Hopkins in Baltimore MA and everything else we could think of to help. He pinned his hope on stem cell but knew this was a long shot. Maybe with the experiment of stem cell research something will change in the future. But for now nothing can help and what his family and friends had to watch for the last 6 months of Joe's life can only be described as horrible. ALS has no concern for the body it just wants to destroy it. And have no doubt it does. I am a strong person and stuck with him all the way but, what I had to watch could be in a SI FI. The breakdown of Joe's body seemed systematic, Speech was first totally gone the last 6 months, hands, feet, legs, bowels, then finally breathing. He never lost his sense of humor or awareness but just about everything else was taken from him.

This illness is terrible and should get as much attention as AIDS&CANCER or any other illness. For some reason it seems ALS needs to raise most of its research money. We could sure use a lot more help in funding. If you have to watch this take a person you have known for 59 years at the age of 59 you would do all you could to find something to help find a cure. It was by far the hardest time in my life bar nothing. We did what we had to and never gave up, but the end result was a hard agonizing death we had to watch. A man in the summer of 2008 was 6'3" 245 lbs in great shape dead at 160lbs in spring of 2010.There has to be something done to help find a cure for this illness. maybe it is time to take the gloves off the stem cell, as we already know nothing else touches this illness. Maybe time to go on a limb and see what stem cell can do. Joe always said he would try anything if it killed him oh well they would know it did not work. And then could try something else he was sure anyone with ALS would go the same route to find a cure or dye trying.

After all as Joe said I have nothing to lose except a life I am losing anyway and it is no fun at all. Joe said we need to quit talking about trials and give them a try NOW for ALS. After what can happen you die trying.

Thank you Joe's life time friend Gerry Severin.

Featured Family: Mary Kay

For the month of May, ALS Awareness Month, we will be featuring individuals and families whose lives have been touched by ALS on our blog, facebook and website. We thank them for their willingness to share their stories to create awareness.

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.

Light a Candle and Join the Fight!

As part of ALS Awareness Month, our Chapter will be holding a virtual candlelight vigil all month on our site at www.alsa-michigan.org. You can make a donation and light a candle in honor or in memory of a life touched by ALS.

By lighting a candle you are helping raise awareness and critical funds which provide compassionate care in Michigan along with global research that will ultimately find a cure. Time is of the essence, please take action today.

TOGETHER WE WILL CREATE A WORLD WITHOUT ALS

Help spread the word and invite your family and friends to light a candle.Thank you to Governor Granholm for proclaiming that in the state of Michigan, May is ALS Awareness Month! Our chapter will be representing Michigan in Washington DC, along with all of the other states, on Tuesday, May 11th to share your stories and to help advocate on your behalf. Our presence in DC every year has had significant positive impact on the level of research funding and legislation that helps empower families with Lou Gehrig's disease. Stay connected via Facebook or Blog to see activities on Capitol Hill!

May is ALS Awareness Month!

May is Michigan’s ALS Awareness Month

At the request of our Chapter’s Public Policy Chair, Todd Noeske, Governor Granholm has declared May to be ALS Awareness Month for the state of Michigan! Please show your support and spread awareness this month by wearing a red ALS Awareness wrist band, passing along this newsletter, or joining our Chapter for some of our upcoming events. Get your band today at:

www.alsa-michigan.org

From May 9th to the 11th, members of the ALS Community, including our own Chapter staff Stacey Orsted (Executive Director) Kristen Munyan, RN & Denise George, RN (Patient Services Coordinators), will gather in Washington D.C. to advocate for ALS research funding and legislation. Advocacy Day is the largest ALS Community gathering in the United States each year.

Past Advocacy Day events have played a major role in such legislative advances as the 24-Month Medicare Waiver, increased funding for ALS research and the passing of the ALS Registry Act, which created the first nationwide ALS patient registry at the Centers for Disease Control and Prevention (CDC). These efforts also saw the approval of regulations that recognized ALS as a service related disease and established a presumptive disability ruling for ALS at the Social Security Administration. This has helped people with ALS and their families to receive timely access to disability benefits.

This year’s attendees will continue to work for increased research funds for ALS and continued development funds for the ALS Registry.

For more information on ALS Advocacy Day, check out www.alsa.org/policy/alsday.cfm.