It was on this day, May 17, 2007, around 2:30 p.m. that Dr. Stanley Appel of the Department of Neurology Methodist Neurological Institute in Houston Texas said, “You, my friend, have ALS.” 

Hi! I am Pastor Bill (Rev. Dr. Wm. C. Hassel). Yes ALS can and does happen to each and every kind of vocation.  I am writing in specific response to ALS TDI “Ask Me about ALS.” But I am also writing this for the more generic: “May is ALS Awareness Month.”

I have been living with and fighting against the official diagnosis of ALS for 12 years on this day at the ripe old age of 57. Let me tell you it has not been fun. ALS has taken from me my ability to do anything like I used to do. It has affected my normal abilities to walk, to talk, to eat, to hug and kiss my wife, to lift my grandkids, to shake a hand, to run, to dance, to sing, to preach, to work, to just about do anything I could do 12 years ago today. I have to adapt to moving in a wheelchair, feeding through a tube in my stomach, using a speech device to talk, a modified van to drive and do everything with handicapped and/or augmented devices now.

Now, on the plus side; I have met and come to know so many great and exceptional people in this journey. Heroes with ALS I call them. I have come to appreciate many people who have ALS, their caregivers, spouses, and their children. I have met so many wonderful doctors, nurses, counselors, social workers, technicians, physical/occupational/respiratory/speech therapists, helpers and people with empathy towards those with ALS. I have been lovingly assisted by people I know, don’t know, and met only in passing that I never will see again. I have traveled and done things I always dreamed of doing that hadn’t I have had ALS, probably not have gotten around to doing otherwise. Life with ALS is not bad in all things.

I am the exception for ALS as most only last two to five years after having been diagnosed. Why I have lived twelve is anybody’s guess. ALS is different for everyone who has it, except for one thing; that would be the fact that you die earlier than normal. I might have the Steve Hawking variety or I just didn’t read the memo on ALS.

Actually, now thinking back on it, I was actually aware of something being wrong with me since March of 2000, seven years prior to the actual diagnosis. I was having weakness in my right arm, which was thought to be tennis elbow - although I was lousy at tennis and hadn’t played it in years. So, I got a cocktail of shots in my arm to no avail. Getting worse, we thought it might be arthritis and took statin drugs which made it worse, not better. On and on I was getting worse; then I had drop foot as well. But, I hid that well and just picked my feet up better. 

Then one day at worship, I dropped a whole tray of Communion Winecups and I had to look into this thing more seriously. The family doctor thought it might be carpal tunnel. But that didn’t test out as a possible cause either. We did a brain scan, no tumors, cancer, or abnormalities.  However, much to my wife and family’s surprise, I do have a brain, I can show you pictures now to prove it too. So then they did a spine scan, which showed no bone spurs or abnormalities; another doppler thing and no abnormalities; MS, no abnormalities; full body scan with no cancer or abnormalities; then tested for Parkinson’s, which it was not. And then probably more, I just forgot all the things we did. Ruling all these things out, the local neurologist electrocuted my arms and legs and measured how fast my muscles responded or didn’t.  I failed that one miserably.  Then the doctor stuck needles in all kinds of muscles, moved the limb and listened for ticks on a speaker or something like that. There I again failed, and muscles were not normal in their opinion. The last thing they did was a muscle biopsy which showed abnormal deterioration for my age. 

The only thing that was for sure was what it was not. The only thing left was ALS. 

I fooled around with another neurologist that kept saying it was possible, then possible/probable, and then probable ALS was the diagnosis.  That was until May 17, 2007, when I got a confirmed diagnosis by Dr. Appel. I have been going to the MDA/ALS clinic in Houston every three or so years for twelve years now. After another year, I had to finally publicly shared with my congregation and others that I had ALS. That was in October of 2008. I was not able to give a full day of work or lead worship effectively. So, I went on disability and quit working full time.

That hit the local Victoria, TX paper, the Victoria Advocate Oct 30, 2008, in an article titled “The 'good guy’s' disease: ALS affects about 300 South Texans” which went viral. I had many people writing and calling me back then. One stood out - Lou Kobbs of the ALS Therapy Development Institute (ALS TDI) in Cambridge MA, as one who cared and wanted to help me make a positive difference from a tragic event. He and ALS TDI have been outstanding support for me along with MDA/ALS Dr. Appel’s “Team Hope”. These along with my wife, family, friends, the local community, my former churches, and many, many, prayers have kept me alive way beyond normal expectations. 

Since that fateful May, I have been part of many projects related to ALS. A local Pastor and the church I served organized a fundraiser called the Stroll, Roll ‘n’ Run. In the past ten years, $302,784.00 has been sent to ALS TDI's research. Along with money for local needs, the latest was a little over $4,000.00 to pay part of an ALS patient’s funeral. ALS is also a ‘relentless’ disease and some die penniless.

The Victoria Advocate sponsored an award-winning documentary “The Breadth of Hope” about me and two others in Victoria fighting ALS.  I’m the only survivor of the three in that film. I was awarded by ALS TDI the “Mary Lou Krauseneck Courage and Love Award” in 2012.

It has been quite a journey, but I am still here. The take away for me is this: “Guess what? We are all terminal, get over it.” and “Even a broken crayon can still color.” I continue on and actually would appreciate your thoughts and prayers. I live on in the hope that someday we will find a cure. To those with ALS; please accept my love and sympathy. Please try to not give up, let’s #ENDALS

Feel free to ask me about ALS, I will try and help.

Sincerely,

Bill