I Am Passionate About Being Heard And Understood
If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more chance to plan a wedding. When our younger daughter married in 2010, she was working full time and asked me for help. I didn't realize the stumbling, falls and fatigue were the onset of ALS. I had so much fun planning the wedding with her! It was a lot of work, but it paid off. Such a sweet, lovely day! Now her sister is engaged. Her busy job leaves her very little time for planning a wedding. I ache to be physically able to do all the kinds of creative things I did for her sister. One more wedding.
My name is Patty Blake. I’m 58 years old, and I live in San Diego with my husband Alan. I have two grown daughters — one married and one engaged — and one granddog. Before ALS, I was busy helping care for my elderly mother. I loved cooking, baking and caring for our home. I was very involved with playing handbells with San Diego Harmony Ringers, a community handbell group made up of advanced ringers from all over the county. I miss making music.
Physically, ALS is wearing me down. But I find my faith is an unending source of strength. I am now receiving care through hospice.
I am passionate about being heard and understood. People with this evil disease are still the person they were before ALS. Just because I cannot speak don't assume I have nothing to say.
When you support the MDA, you are directly helping families like ours cope with the devastating effects of ALS, both physical and emotional. The MDA generously funds research toward effective treatment, and a cure, for ALS.
Love Is Defined By What You Do On A Day-To-Day Basis
If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more trip with my wife to explore the National Parks at Yellowstone, Glacier, the Grand Tetons and the Redwood Groves of Northern California.
Hello, my name is John Boucher, and I want to share a little about the Muscular Dystrophy Association, and a little about my life, living in the advanced stages of ALS. It's not a story I ever saw myself telling, at least not in the first person, but I want to assure you that, much to my amazement and I'm sure your disbelief, it is not a sad story.
First, I want to give you a little background about myself and my family.
Most important, I am married to a wonderful woman, Mona, and we're in the midst of a loving and supportive relationship that has spanned the last 28 years. Of course, I needed to work that in first to ensure myself of enjoying a 29th year.
Although we were not able to have children, we do have a service dog named Barney who was rescued and then trained by Next Step Service Dogs to be our companion and my trusted servant and protector.
Now, let me state the obvious: Having ALS is just about as much fun as you might think it is. But five years ago, before I was me, the way I am right now, I was pretty much like you, the way you are right now. I was a registered nurse who had worked my way up to become the corporate director of recruitment and affirmative action over a 13,000 employee health care system in San Diego, consisting of five hospitals and 28 clinics. Prior to that, I managed a 70-bed cardiac unit in the same health care system.
When I was a young man, I joined the Navy right out of college, went to Aviation Officer Candidate School in Pensacola, Fla., and then on to Naval Flight Officer training. Once I earned my wings, I was assigned to a San Diego-based fighter squadron and ended up logging a little over 200 missions in Vietnam and accumulating over 300 carrier takeoffs and landings.
So, the point is, up until four years ago, I was healthy, in great shape, working in a successful career and generally enjoying a good life — and, to be honest, thinking I was very hot stuff and pretty much bulletproof.
Then all of a sudden, I got the rude awakening — I was diagnosed with ALS. Pretty quickly I lost the ability to speak, eat, drink, stand, walk, get dressed, shave, shower, brush my teeth and even go to the bathroom by myself. Unfortunately, it's continued to go downhill from there.
Well, what do you do with that? Even with all my medical training, I had no idea how to live with this. I had always prided myself on being totally independent, and in one instant I had to face the fact that Mona and I felt completely lost.
After a year or so of feeling our way through all the changes in our lives, someone told us about the Muscular Dystrophy Association, and that's made all the difference for us. They invited us to their ALS support groups, where we met others living with this disease, and they taught us that there is not only life after ALS, but a life full of joy and meaning.
Those connections are invaluable, because as difficult as this is for me, it's far more difficult for Mona. Over the last four years she not only has had to hold up her end of the relationship, she's had to hold up my end, as well. On top of that, you might remember that I just gave you a tip-of-the-iceberg list of all the things I can't do for myself anymore. So, who do you think gets to do all that stuff for me now?
I don't refer to Mona as the luckiest woman in the world for nothing ...
Seriously though, as I become more and more helpless, Mona constantly has to attend to my simplest needs because I can't anymore. And you know what? As hard as it is to believe, there are actually times when she doesn't feel like it. Times when she's too tired, too grumpy, too sore or too sad to take care of my wants and needs. Yet, I can honestly say that most of the time I can't tell because Mona always acts like there's nothing in the world she'd rather be doing at that moment than taking care of me. What Mona demonstrates is that love is defined by what you do on a day-to-day basis rather than by what you feel at any given moment. I'm an awfully lucky guy, and the good news is that I know it.
The support groups that MDA has organized and manages free of charge have helped us learn about all the resources available to us. More important, because of the relationships we've formed, our new friends have helped Mona navigate her way through the bureaucratic and emotional minefield that ALS brings with it.
The MDA support groups have given Mona and me tangible proof that we are not alone. We know others who have passed this way before us and now are there to share their experiences, strength and hope with us. We now have the opportunity to pass the lessons that have been so freely shared with us onto those who show up angry, afraid, overwhelmed and bordering on despair while in the initial stages of this journey. It helps to give us a meaningful context to view this experience as an opportunity to be of service to others.
If that is all we ever received from the Muscular Dystrophy Association, that would be enough, but that is just one of the invaluable services they have provided to us. In addition to the sense of community, the Muscular Dystrophy Association has loaned us equipment, including a computer that will operate by following my eyes, an electric wheelchair and everything in between, all free of charge.
Then, there are the hundreds of millions of dollars the Muscular Dystrophy Association uses to fund research to find cures for all muscle diseases, not just ALS, and the many programs and supportive environments they create for children and their stressed and heartbroken families. You can begin to understand why the donations you make to the Muscular Dystrophy Association are so important and touch so many.
Now I'd like to shift the focus and talk about my life with ALS.
Every once in a while, somebody works up the courage to ask me what this experience is like for me. I imagine some of you may be curious, too. So here it is, with this disclaimer: I can't speak for anyone else. This relates to my own progression and how ALS has affected me so far.
First, I have to tell you, this is such a weird experience. I'm not exactly paralyzed, but I'm getting there. Right now, I can move most parts of my body a little bit, but with great effort, very slowly, without much range of motion and no strength. Life is a constant exercise of surrender and acceptance. My latest challenge is I'm finding that I can no longer pick up the remote control. It's too heavy, so I have to let somebody else operate it. That may be the cruelest blow so far.
It's funny, but in spite of all that is going on with me, I feel exactly like the same guy I always have been. I still like to laugh and joke around, I still have the same interests, I'm still in here, I'm still John.
With that as background, I want to talk briefly about the unexpected positives that have come to me through this experience. Although I would never volunteer for this, if I let myself accept this is happening to me, I can appreciate that there is an inner journey opening up for me if I choose to follow the path. None of this is original, but it has become real for me over the last several years.
First, I've come to know that I am not my body. I never would have seen that were it not for ALS. As I alluded to above, my body has become almost completely useless, yet I (whatever "I" is) am still in here. I'm still the same guy I always have been. I'm genuinely happy the great majority of the time.
Lately though, I'm beginning to have another realization. You see, I'm not always happy. There are times when I am overcome with sadness, or I start feeling sorry for myself, and to be honest, self-pity can be intoxicating. So, if I want to be on the pity pot, where does the willingness to get back into acceptance and gratitude come from? Well, I'm starting to experience that there seems to be an inner strength that supports me.
I once heard someone say that when you say that someone, or something, is spirited, he had no problem picturing what that person or thing was like. By the same token, when he heard that someone had lost their spirit, he could just as easily picture that. However, when someone spoke of spiritual power, he shut himself off from the concept, feeling he was too sophisticated to believe in that type of thing.
Well, I'm not religious, but I have always considered myself spiritual, and the gift ALS has given me is that on a practical level I'm experiencing that there is a spiritual power supporting me on a deeply personal level, and that power helps me face every day with a renewed sense of purpose and meaning.
Another lesson I've experienced time after time is that people are incredibly kind and caring to me. Even though I can't venture out on my own anymore, everywhere I go I find that perfect strangers go out of their way to make sure I'm OK, whether it is in big things or in little things.
Speaking of perfect strangers going out of their way, you are a perfect example of what I'm talking about. Thank you for your support — you truly make a difference.
It Has Been A Bittersweet 16 Years
If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want to give one more bear hug and kiss to each of my girls. Being able to physically pick them up and squeeze them in my arms is what I miss most in life.
It has been a bittersweet 16 years since my ALS diagnosis at the age of 30.
“Bitter” because there are people still dying from ALS and there is no cure in sight. “Sweet” because I'm a lucky guy to have been blessed with the best family and friends a man could ask for ... especially my three angels.
All my life, I had lived a very active and healthy lifestyle until my diagnosis. I even had the opportunity to play football for the University of Nebraska (Go Big Red!). Having a family and becoming a father was a goal of mine, and I looked forward to being the best “Daddy” ever. Like most parents, giving and receiving bear hugs and kisses from your children is priceless, and you can never get enough of them.
Being a father of three beautiful girls has been my main motivational drive in my fight against ALS over the past 16 years. I'm considered to be one of those “lucky-unlucky” ALS patients to have such a long and unusual longevity. Three to five years is the normal life expectancy after diagnosis, and I'm still living a somewhat normal, independent life.
MDA, and its wonderful, compassionate and helpful staff are an essential and integral part of my life, as well as others like mine. Through the financial support of others, MDA can offer many services as well as emotional support to their families that are facing an uphill and emotionally fatiguing battle.
The Challenge Of My Lifetime
If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want more time with my family and to make a trip to Israel.
It was 2003 and all was right with the world. At 46, I had everything any man could want — a beautiful wife, two healthy sons, a good job and plenty of time to enjoy my favorite pastime: football. However, after some mysterious tremors and noticing things weren't quite right, I was diagnosed with ALS on the day before Thanksgiving.
That day, I was focused on things to get done at home with family coming for the holiday. But reigning most dominant in my thoughts was what had happened the Saturday before, the devastating defeat the University of South Carolina Gamecocks had suffered at the hands of the Clemson Tigers. An avid Gamecocks fan, I lived and breathed only to watch that rivalry game played every November. This year, the final crushing score of 63-17 haunted my waking moments and revisited me nightly in my sleep as I tried to accept the Gamecocks’ defeat.
I took thoughts of the game into the doctor’s office with me — mentally dealing with the challenge of sports; and only moments later, the neurologist gave me the challenge of my lifetime.
“Mr. Jackson, I’m sorry to tell you that you have ALS.” Upon hearing those words my world shattered, leaving only shards of what had been. I didn’t know a lot about ALS, but I knew it was fatal; I knew I’d just been given a death sentence, and now my brain scrambled. There wasn’t a place, a compartment in my being where I could put the words “terminal illness” and still see things ever returning to “normal.”
Driving home from the doctor’s office, weighted down by my diagnosis, I realized there was a different Larry Jackson driving my car. Instead of football, my thoughts were filled with the endless “nevers” that would become my new reality. Would I never live to see my boys reach adulthood, never be present at their weddings, never know my grandchildren?
Eleven years later, I can say that I'm glad ALS came into my life. I am still doing well and am one of the very few people to have longevity with the disease. I am still able to walk with assistance, talk and be understood, and eat whatever I want without choking. Through this disease, I was led to find the peace of God, and I have lived to experience the purest joys. I should be dead by now, but instead my family puts my special wheelchair into the van along with my three grandchildren, and we go to football games, to the beach, to gatherings of friends where we share food that I have never choked on. I take every opportunity to use my voice to tell my story, and every day, holding Cindy’s hand, I walk to my wheelchair.
MDA helped me start a support group for ALS patients in Fort Mill, S.C. MDA facilitates the meetings, which has been an enormous help to those with ALS as well as to those who care for loved ones with ALS. I have been going to the MDA ALS clinic for at least 10 years and the only insurance I have is through Social Security Disability. I have never received a bill for the services they rendered to me because MDA has always picked up the remainder of the bill. Also, MDA allows for $500 for repairs to my wheelchair every year. They help to pay for medical equipment and medical services that I need, not to mention all the research. If not for MDA, my family would be in financial crisis.
I Would Live Life’s Adventure Completely
If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more adventure, preferably on my sailboat or perhaps camping out in some remote wilderness, to feel once again the gift that the natural world gives us, to explore with all my senses and abilities that which surrounds us every day. I would stand on the foredeck, feeling the wind against my skin, wake from my cot in the dense forests hearing the sounds of birds and smelling the trees around me. I would walk in sand, feel the waves against my feet, clamber across logs and boulders, chop my own firewood. I would live life’s adventure completely.
Born in Victoria, British Columbia, far too long ago to make a difference here, I was, up until recently, a lifelong resident of the Vancouver and Fraser Valley region of Canada's most western province. I have had the joy of a very diverse career ranging from my first career as a stockbroker to training consultant and technology consultant to project manager.
Major changes in my life before my diagnosis of ALS meant relocation to Calgary, Alberta, Canada. It was there that I received the diagnosis in November 2012, at 57 years of age. I continue to share my life and experiences both through my blog, titled Richard is Living with ALS, and through a tremendous group of friends, support specialists, and most importantly, my four children and three grandchildren (with a fourth on the way).
My life has changed dramatically as my ALS has progressed. Before ALS took away my ability to use my legs, I was an avid sailor, hunter and all round adventurer. I still love a good road trip, but even this pleasure is more difficult for me now. I continue to find passion in my adventure in life, and will make that adventure where and when I can.
As the Ice Bucket Challenge evolved last year, I became the unlikely, and unofficial, “poster child” for ALS in Canada. I appeared in numerous interviews on TV, radio and in print. As the momentum for this campaign slows, I am convinced that the best outcome of the IBC was the awareness it raised, helping people understand the challenges and frustrations of those facing this terrible disease. As I said in more than one interview, “First comes awareness. Then comes research. Then treatments, and eventually a cure.”
I Am Determined To Live A Lifetime Full Of Joy
If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more tennis match with Bob. I would want one more run with Ashleigh. I would want one walk in the park with Jazzy. I would want one more chance to zipline through a beautiful canopy of trees.
I was diagnosed with ALS in November 2012 at the age of 44. I recently left a 28-year career with Harris Teeter, where I worked as Customer Relations Manager to spend quality time with my husband Bob, daughter Ashleigh, and friends and family. I enjoy traveling, boating, gardening, reading and football. Highlights of my week include Champagne Wednesdays with Bob, porch time with my Dalmatian Jazzy, and bible study each Thursday at my church.
My story begins a little more than five years ago when I was having trouble walking. I was tripping, falling and couldn't keep up with anyone. Muscle weakness in my legs was confirmed and later we received the diagnosis. At this time, my upper body is not affected, and for that I am extremely grateful. I am still able to walk with assistance, but I truly miss the active lifestyle I once lived.
It is important for MDA to have ongoing support so that they can continue to help families living with ALS. Thanks to MDA, my quarterly visits to the ALS Clinic are covered. I have also benefited from their donated equipment in loan closets found in these clinics, and support groups for people living with ALS and their families are active due to MDA funding. MDA is the world leader in funding ALS research, and I genuinely feel that they are in this fight with me.
I am passionate about raising awareness and funds to help defeat ALS. My hope is that my progression will continue to be slow and that ultimately a cure will be found.
I am determined to live a lifetime full of joy. I am grateful for many things, and I will strive to surround myself with these very things that make me happy.
I Would Wrap My Arms Around My Wife
If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more long hot shower and then I would wrap my arms around my wife, son, father, sister, caregivers and friends, giving each of them a warm, loving hug.
My name is Richard K. Raker, and I am 57 years old. I have lived in Honolulu, Hawaii, with my wife and son for 30 years. I have ALS, diagnosed in September 2006.
Prior to 2006, I worked as an English as a Second Language teacher, and then as a computer trainer for a major health care organization. Very soon after my diagnosis and a quick disease progression, I was bedridden, relying on a ventilator to breathe. I no longer could work, so I spent most of my time reading and watching TV and movies. And then one day, I discovered the joy of storytelling.
Writing stories has become my passion. It feels good to write. Writing takes me away from my everyday troubles and gives me a creative voice that I never knew that I had. Since 2006 I have written and self-published eight books and several short stories. I love sharing my work with others.
It is very important that MDA and other organizations support research to find treatments and cures for ALS and other neuromuscular diseases. Hopefully, in the future others will not have to suffer this terrible condition. I also feel that MDA provides services and support to current patients and families that must be continued. The local MDA ALS support group has been a very important resource for me and my family.
That Day, That Time, Is Now
I can’t help but dream that if for just a brief period, I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would run one more half marathon with my husband and three children.
My name is Joan Sucher. I am 65 years old and I have ALS. I was diagnosed on Jan. 14, 2013, at age 63.
Since that time, living life has taken on a whole new meaning to me. No longer am I preparing for that "rainy day" or for the time when we can act on our dreams because that day, that time, is now. For me, a person with ALS, there is a very real sense of urgency to be all, do all, savor all, love all. No one, no physician, researcher or health professional can predict how fast or slow my progression will go. But, what they can very sadly and helplessly say to me is that there is neither a cure nor a way of stopping the progression of this ugly disease that destroys the life of every person suffering from it. And that is why it is so important that MDA continues to research the cause of ALS and how to not only keep the disease from progressing but prevent it from happening at all.
Prior to my ALS, I was fully engaged, active and happy in my life. I had worked hard for 30 years and retired at 61. My husband and I raised and educated three wonderful children. I remember at age 41 being inspired by my then-15-year-old daughter running track. She made it look so easy and fun. I decided to give it a whirl and found I loved it too and proceeded to build my miles. Over the years, I ran nine half marathons. My goal was one full marathon before I hung up my shoes, but I never made it. Tom had begun running too, and we often ran together. We loved golfing; it was something we could do together. Being outdoors and physically active were always favorites of mine. I felt my life was full, rich, blessed because I had a loving husband, three incredibly good children and six grandchildren whom I love "to the moon and back." I had all this, and I was healthy too. I was one of the lucky ones.
But then, I started experiencing hoarseness. After multiple tests, an ENT (ear, nose and throat) doctor diagnosed me with acid reflux, and I began medication. (Who would jump to ALS?) But the hoarseness got worse, and as time went on I began slurring a word or two late in the day, then more. My children at first teasingly asked me if I was drinking too much. After their encouragement, I sought out a neurologist for a battery of tests. That was on Jan. 2, 2013, and two weeks later I was given my diagnosis. My life collapsed. We knew enough about the disease to know that it was a death sentence for me. Our dreams of growing old together and watching our grandchildren grow were shattered. Why was this happening to me? My father lived to be 101, my mother 92; there is no history of ALS or neurological problems in our family. How could this be? I was a healthy person, wasn't I? I have since learned that for me there isn't a cause for ALS. It just happened. And it is a progressive disease. There is no known way of stopping the atrophy taking place in my muscles that will eventually render them useless.
Life now with ALS — I have lost my voice completely and rely on my iPad or communication device to speak for me. I have difficulty chewing food, as my tongue is losing its ability to move food around in my mouth. Swallowing is becoming difficult, and I fear choking. I can no longer control the saliva in my mouth, so I drool. Now, my right leg is stiffer, less flexible, and I am walking slower and slower. Sometimes, I laugh or cry at inappropriate times, which is embarrassing and is a direct effect of ALS. I know the time is coming when I won't be able to eat or drink, and so I face a decision about whether or not I’ll get a feeding tube. I wonder how much time I have before I am in a wheelchair and become dependent on the people I love so much — my husband and my family.
Through all of this, I have met some amazing people in the faces of physicians, health professionals and MDA. I have seen and experienced real goodness and caring from so many. All of them understand my desire to get through my ALS journey with dignity and for a purpose. That and my family are my passions.
Each time I have needed help, advice, equipment, guidance, MDA is there. They are truly walking this journey with me and my family. Their support has been immeasurable and a true blessing in the midst of this awful disease. I want my life with ALS to make a difference for those who come after me. That is my purpose now. I know, given the ongoing resources and support, MDA and all the dedicated health professionals can help me with my purpose. A cure must be found for this ugly disease so no longer will there be people living with ALS. And for those of us who are living with ALS now and our caregivers, MDA’s support makes our journeys tolerable with their time, talent and caring support.
Someone once said, “… no man is an island, no man walks alone.” Certainly this applies to all those living with ALS, for we cannot walk this walk on our own.
Erin Brady Worsham
I Became Passionate About Being There For My Family
If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want one more opportunity to make a difference in the life of someone who doesn't get out much or who lives in a nursing home, because I now understand the isolation.
My name is Erin Brady Worsham, and I am 56 years old. My husband, Curry, and I have been very happy to call Nashville, Tenn., our home since we married in 1987.
For over 20 years, I have lived with ALS. No matter how long I live, I will never forget Sept. 7, 1994, when Curry and I first heard the doctor say the words “amyotrophic lateral sclerosis.” My thoughts were all about death, especially since I had no intention of going on the ventilator, until we found out I had gotten pregnant with our only child, Daniel, the day after that diagnosis. How could I continue thinking about death when I was carrying life inside me?
From that moment, I became passionate about being there for my family, and that has meant accepting concessions like a feeding tube and the ventilator. The price I’ve paid is that I’ve also had to accept that I can never be the wife and mother my mother was, but I’m still here with the love of my life and our son is a beautifully unique individual who has enriched our lives beyond measure.
I was an artist before the diagnosis, and technology has allowed me to be an artist still and teach my son the value of being productive. I hope and pray that people will support MDA and all efforts to find a treatment and cure for ALS, so that no one will ever have to hear those words or make those life-and-death decisions again.