Why I Walk by Michelle

The Walk to Defeat ALS in Richmond - October 29, 2011 - Brown's Island

You may think I walk in this for my own benefit. Not directly, of course, but because I am afflicted with this disease, the more money raised could lead to treatments and cures that would benefit me personally.

This isn’t why I walk. This isn’t why I’m asking for your money.

First, I’ll tell you why not for me. I’ve got it good. When I was diagnosed with ALS on October 2nd, 2008, Georgi and I asked the neurologist how long I had before the diseased reached its peak. He said blankly "2 to 5 years." Meaning worst case scenario, I wouldn’t be writing this note right now. Many of you might have attended my funeral by this point. Best case scenario, I’d have 2 more years from today. Just take all that in for a moment.

But I’m lucky. A couple of months after diagnosis, I saw a new neurologist, an ALS specialist, for a second opinion. After some repeated testing I was told that although there was no question in his mind that I was given the correct diagnosis, I belonged to a small percentage of ALS patients whose bodies have found a way to compensate for the loss of function and progress much slower than predicted. While he couldn’t, and still can’t, give anywhere near an accurate prediction of my prognosis, I hold onto the statistics he gave, that 10% of cases may live 10 years or more.

10 years from diagnosis. It will be nearing my 10 year wedding anniversary with my soul mate. My daughter will be almost 9 years old at that point. She’ll be in 3rd grade. I won't even be 40. Again though, I don’t do this for me. I feel I'm the lucky one in all this right now.

I do this for Lucy. Lucy welcomed me with open arms at our first support group meeting. She made me laugh when all I had been doing for weeks up to that point was cry. She encouraged me to eat all of the sweets and fattening foods that I wanted – she said if we’re going to be given this shitty diagnosis, we might as well have some fun and eat whatever the hell we wanted. She showed me that a stubborn attitude is the best medication I can give myself. When her speech was fading, she had actually programmed “Shut up!” and “Are you listening to me?!” into her speaking laptop. Lucy passed away July 20, 2009.

I do this for Craig. Although ALS had taken his speech, there was never any question about how he felt about you. He was one of the few people I would allow to rub my belly when I was pregnant. He showed me how to communicate without ever speaking a word. The joy I saw when he held Aislyn the first time I will never forget and I’m thankful to have a picture to always remember. I went to visit him during a hospital admission. He held my hand and we watched TV. Simple acts mean so many things. Craig passed away May 4, 2010.

I do this for Libby, my continued inspiration that ALS is not a death sentence. Diagnosed at the same age I was, today she is 20 years out from that fateful day. Libby was the first to give me back hope for my life. She was the first person to make me believe that I could still have a family, having had 2 children herself after she was diagnosed. Whenever I feel down, I just think of her and all that she has done, even with this black cloud hanging over her.

I do this for Melanie, another one of us 10+ year anomalies. And while her and Libby are both quite progressed at this point, they forever remind me that there is still time to live.

I do this for Laurence and his lovely wife, Dani, our friends “across the pond.” Diagnosed around the same time as me and with similar onset, Laurence is progressing faster than I. Dani and I were pregnant at the same time, and they now have an adorable son, Stan. I don’t have to question the emotions that they probably feel on a daily basis, having this child they’ve dreamed of and facing this bitter certainty. To know another family facing very similar circumstances is a bittersweet comfort. Every day I wish we lived closer to offer the physical support as well as emotional.

I do this for Shawna, my pink-haired, absolutely crazy and amazing friend who constantly reminds me that as long as we’re “on this side of the dirt” we must be doing alright! I can’t even begin to describe how it’s felt to have what seems like a kindred spirit in this hell, to have someone my age to find humor and support in, and to hopefully provide that back.

I ask for your support for all of these friends of mine. Supporting the ALSA supports the staff that goes above and beyond their job descriptions. Between home and hospital visits at all hours, coordination and arrangement of a multitude of services, equipment delivery & maintenance, or just a friendly, understanding voice to talk to. But supporting our walk and the ALS Association does more than pay the salaries of the people who work for the ALSA.

Donations maintain the support group that I found comfort in after I was diagnosed, and where I met the majority of these people who have touched me in ways that, without them, I may well have just crawled into a hole and waited to die. It provides camaraderie for patients and their families and friends.

Donating provides equipment, often times for free, for people with ALS. Big things like stair glides, wheelchairs, scooters, a multitude of large and small assistive devices. Sarah, our support group leader, would be boxes upon boxes of various gadgets to help with actions you may take for granted but that we have trouble with on a daily basis, like zippers, buttons, holding eating and writing utensils, and even putting on shoes. I don’t think I can even name everything that is or could be provided by the ASLA and their loan closets. Items that can cost thousands of dollars are simply handed over, with the only expectation that it be given back for another family to use one day. Even servicing of equipment can often be arranged with little cost from the patient or their family.

Donating provides co-pay and co-insurance assistance for the inevitable mounting medical bills, no matter your financial class. They provide respite care for people with ALS, giving their caregivers a break from turns into a constant demand for care the further progression goes. And of course no fundraiser would ever be complete without some of the money going towards research. So that maybe these friends of mine who are still living will be around to see us find a cure, and I won’t have to have their names listed as ones who have passed when this time rolls around next year.

I do consider myself lucky. I don’t feel as if I need to beg or plead on my own behalf. I’ve got it good. Instead I will do it on behalf of these friends of mine who have been affected by this disease. Every $1 you give will support them in some way. There are many days I wish this wasn’t a part of my life, but there are so many more where I can actually say I’m thankful to have the opportunity to a part of each of these peoples’ lives and have them be a part of mine.

"For the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth. .... I might have had a tough break - but I have an awful lot to live for!" - Lou Gehrig

Donate, walk, or both:

http://web.alsa.org/site/TR/Walks/DCMDVA?px=2848166&pg=personal&fr_id=7454

Buy a T-shirt, either for the walk to just because:

http://www.brownbagtees.com/fundraiser_display_full.php?pID=1518

A Note from Michelle

If I didn’t have ALS....

I would learn Brazilian jujitsu

I would try one of the careers that I should have done first

…. Police officer

(except I can’t hold a gun steady, or run, and I’d probably end up cuffing myself in a scuffle)

…. CIA agent

(crippled spy? i would be unsuspecting!)

…. Forensic scientist

(can’t even hold a cup of coffee steady. evidence contamination, anyone?)

…. Flight nurse

(still nursing. but I don’t think a power-chair would fit in the helicopter)

I would carry my daughter every second of every day

I would take piano lessons again

Or maybe even upright bass….

I would learn to restore an old car with my own hands

…. buy a busted up ’53 chevy coupe

…. make it the most beautiful car ever

I would hike a very large mountain

(bet I could still, would just take 2 weeks)

I would learn to fly a plane

(steering with your feet takes mad skill)

I wouldn’t worry if I’ll be able to braid Aislyn’s hair one day.

I wouldn’t worry about not being here for my family.

I wouldn’t incessantly rewrite my last wishes in my head.

I wouldn’t need to be thankful for what I still can do, because there wouldn’t be things thing I can't do, reminding me that every small limitation is slowly growing into a much larger one, and there isn’t a thing to do about it except wait - and dream for a cure.

A cure would mean I wouldn’t have ALS anymore.

Saying Goodbye

We have, for the past couple of years, found a lot of encouragement, support and inspiration from the Proper family. Becky, also diagnosed with ALS at a young age, managed a busy family of 3 with two young daughters while fighting ALS. Fred always offered positive support and encouragement over drinks at our support meetings. We found comradery in being young people. There aren't a lot of us around. I found Becky's passion for living to be contagious and Fred's love and unending support of his wife to be inspiring. It made our first year post-diagnosis bearable. I have a heavy heart in saying goodbye to Becky. I do know that she is at peace but I hate ALS and I hate that it has robbed Becky of watching her girls grow up. I hate that it has robbed Fred of having his beautiful wife by his side. I also hate that we facing the same future. Please help all of us fighting ALS and honor Becky by considering a donation to the ALS Association. The money donated will go directly to assist in patient care (managing extremely high medical bills), will provide adaptive equipment, and will assist in researching to find treatment and a cure for this horrendous disease.

Rebecca Tiller Proper

PROPER, Rebecca Anne "Becky" Tiller, passed peacefully May 12, 2011, concluding her long stubborn struggle with ALS (Lou Gehrig's Disease). Becky was born December 5, and was a member of Woodland Heights Baptist Church. She is survived by her daughters, Caitlyn, and Maggie and her husband, Frederick; her parents, Betty and Robert Tiller; and her sister's family, Beth, Darrell, Hunter and Ashleigh Branch. A memorial service will be held at Woodland Heights Baptist Church at 611 31st Street at 2 p.m. on Sunday, May 22. In lieu of flowers, please consider contributions to the ALS Association and Woodland Heights Baptist Church.

April 2011 Visit to Duke

We've been feeling really fortunate this year to have Michelle's frequency of visits reduced to about 2-3 times a year with the treatment team. When she was originally diagnosed, we were originally making monthly trips down to Durham, NC to see the team and, while we were always thankful for our team, it was difficult to spend so much time with this diagnosis in the forefront.

With that said, it has been about 5 months since our last trip to the team at Duke. Dr. Bedlack looked stunning, as always, this time around. He wore blue, green and black plaid golf pants, a black leather blazer, and a black leather tie. And, did I mention that he is always rocking his signature faux-hawk? lol One of a thousand reasons that we love him. After doing her neurological evaluation, he said that Michelle was having more progression in her right arms/hands and had more atrophy on that side. Michelle had pretty much pegged that and her right side has been, from day one, the part of her body that she has the most difficulty with. She is still resistant to PT and OT's recommendation for assistive devices, which has now just become a joke among the staff when we arrive.

We did receive some unexpected news at this appointment. Michelle's FVC has dropped a bit and they also have some concerns about her breathing at night. She has began snoring at night, waking frequently, and struggling with overall fatigue (above and beyond her normal fatigue from ALS) during the day. Apparently it is common for folks with ALS to begin having issues with progressive diaphragmatic muscle weakness (in most folks they call this sleep apnea). While most folks who get diagnosed with sleep apnea slap on a machine during the night and call it a day, this diagnosis for folks with ALS can mean the beginning of a decline in respiratory status. Most patients who go onto bi-pap for the evening hours slowly increase its use to a few hours during the day and then to more frequent periods during the day. Some people even make the decision to go forward with being trached and vented.

With Michelle's progression being very atypical and very slow to this point, the news of a possible change in her respiratory status is daunting. The symptoms that we've always feared the most have been her bulbar symptoms. We have enjoyed living in this sort of alter universe for the past 16 months, enjoying our baby daughter and our busy and wonderful life. ALS is now throwing us a curve ball. We both laughed tonight in bed after we talked about how it was much easier to pretend like Michelle does not have ALS. And, while we do laugh about it, sometimes this has been the only way that we've been able to function in our day to day life. Friends out there who have lived with this illness or been the caretaker for someone with this illness certainly understand. Michelle has had almost nothing in the way of bulbar symptoms since her original diagnosis in 2008. And, the truth is, we will not know the full extent of what is going on with her body until she does her sleep study through MCV. We're both sort of hoping that it is just allergies (we can hope, right?).

There are very few moments that make me feel completely inadequate as a partner, but tonight, when my beautiful wife laid in my arms with tears streaming down her face and said "Babe, I don't want to be sick. I don't want to die," I felt the most inadequate that I ever have. There aren't a lot of reassuring words to offer or some miracle fix that we can work toward. All that I could say is that I know and I'm going to be right here by her side for every moment. I feel fortunate, more and more everyday, for having been given the gift of such a beautiful woman to call my wife.

November 2010 ALS Clinic Trip

MILESTONES - 2 years since diagnosis and Michelle's 30th Birthday

Michelle took her tri-annual trip down to Duke for a check-up to see how she is doing. At our last trip, she was having progressive weakness in her hips, making her more susceptible to tripping/falling and was having progression in her hands and arms. Her FVC rates were still normal, though a little lower. The team urged her to try using a walker to help with stabilization and Michelle all but gave them the finger. *laughs* That is my beautiful, stubborn wife.

This trip went better than anyone could have asked for. Her FVC (forced volume vital capacity) rate was BETTER than last trip! Haha! She also had such minimal progression with her arm weakness that she hadn't noticed any differences. Dr. Bedlack said that he only noticed a very slight change since her last visit, which was wonderful news. The physical and occupational therapists only stopped by for a few minutes because they've come to realize that the only thing that will put Michelle in a wheelchair or walker at this point would be getting hit by a bus.

This trip was a huge celebration, because it marked 2 years since her initial diagnosis. Dr. Paschall gave us the name of Dr. Richard Bedlack and here we are. This trip also marked another HUGE milestone - Michelle turned 30! There is so much to be thankful for. Things are going so well that Michelle does not have to go back for another 6 months.

Walk to Defeat ALS 2010 - Miles for Michelle

Our friend, Melanie - also diagnosed with ALS in her late 20's

Our little miracle baby

Our friend and inspiration, Libby - also diagnosed with ALS in her late 20's

Our fighter, Michelle

We made it to another year for the annual ALS Walk. October made 2 years since Michelle was diagnosed with ALS. In October of 2008 they were giving us that long for Michelle to live and, here she is, 2 years later, kicking butt. We have felt so incredibly thankful over the past two years to have become linked to our local ALS Association Chapter and our wonderful social worker, Sarah. We have also been fortunate to join the lives of a few families who are also battling ALS. Lucy, Craig, Libbie, Melanie, and Shawna have been our rocks for the past couple of years. Sadly, we lost Lucy and Craig before this years walk. What we are learning with ALS is that loving others with this disease means being prepared for losing them, too.

We felt fortunate to bring our little miracle baby to the walk with us this year. Michelle was pregnant during the 2009 Walk and we were all crossing our fingers that things would go well. With very few women of child bearing age diagnosed with ALS, there was no research on pregnancy and ALS. But we had our incredible neurologist, Richard Bedlack, our incredible OB, Christine Isaacs, and Michelle's fiery spirit.

Thank you to all who donated to support our fight and bring more money to research for a cure and care for those living with ALS. Your donation directly impacts our life every day and we cannot possibly explain our gratitude.

K. Craig Thompson (1952-2010)

When Michelle and I ventured into our first ALS support group, just a couple of weeks after her diagnosis, we met Craig and his wife, Rita. Craig had an incredible love of life that radiated, even as his body slowly gave in to ALS. Even after losing his voice, Craig shared in our excitement of pregnancy with big smiles, thumbs up, and tons of belly rubbing during Michelle's 9 months of pregnancy. We felt so thankful that Craig was still fighting when Aislyn was born in December. After meeting our parents, Craig was the next person we wanted to introduce our little girl to. He waited with such anticipation for her to be born and was so excited when she finally arrived. The picture above is one of Craig holding Aislyn when she was just a couple of weeks old.

Craig lost his battle with ALS this month. It was devestating for Michelle and I to say goodbye to a man who has been such an important part of our life. Craig fought this disease with courage and humor and brought love and comfort to all who knew him. He will be so missed.

THOMPSON, K. Craig, 58, of Varina, went to be with our Lord on May 4, 2010, after losing his courageous battle with ALS (Lou Gehrig's disease). He was preceded in death by his father, Kenneth P. Thompson. He is survived by his wife of 33 years, Rita Thompson; two sons, Bryan Thompson and wife, Shana, and Justin; one granddaughter, Jessica Thompson; mother, Fern Thompson; two brothers, Kurt Thompson and wife, Jennifer, Brent Thompson and wife, Brenda; and nieces and nephews, Russell, Karl, Brittany and Brooke Thompson. Craig was a UVA graduate, a Certified Public Accountant, and an active member and current past president of the Accountant Society of Virginia. Craig was a former Henrico County School Board member for the Varina District, a past member of the Glendale Ruritan Club and a previous member of the Board of Directors for the Henrico Police Foundation. The family will receive friends from 2 to 4 and 6 to 8 p.m. Friday, May 7, 2010, at Nelsen Funeral Home, 4650 S. Laburnum Avenue, Richmond, Virginia, where services will be held at 11 a.m. Saturday, May 8, 2010. Interment will follow at Washington Memorial Park. In lieu of flowers, contributions may be made to the ALS Foundation at www.als.org.