I am 37 years old.  My husband of just one year is Frank.  He is 44 years old.  We started dating back in 1990, enjoying all kinds of physical activities.  A favorite would be downhill skiing.  We all think of Frank as an "expert" skier.  He taught all the beginners we brought along. 

Anyway, everything was fine, as far as Frank's physical well-being until  the winter of 1993, when he joined an ice hockey team.  Something he hadn't done since he was about 19 years old.  He came home after the first game and complained that when he fell down, it was very difficult for him to get back up off the ice.  "Not normal," he told me.  I brushed it off at the time, he hadn't played in 18 years.  He was getting older and under a lot of stress.  He lost his Mom and Dad within a year of each other and very unexpectedly.  We all know what stress can do to us, even physically. 

Well, he continued with hockey and was getting very frustrated by the 5th game or so.  We went to see his doctor.  Its hard to remember all the details, but I do remember him saying, "CPK levels are through the roof."  After a few series of tests, his doctors diagnosed him with Polymyositis, and sent us to a neurologist.  We went to see the neurologist who examined Frank, testing his strength, examining his fasciculations, etc.  After only a half-hour in his office, he told us that he was 99.9% sure that Frank had ALS (aka:  Lou Gehrig's Disease).  Well, we both had no idea what that was at the time.  So being the optimist that I am, I asked if it was fatal, trying to make Frank feel better...

"Yes," he replied, "he has about 2 years left."  I can never explain the horror I felt.  I will never forget it as long as I live!  After he told us that, we got up.  I don't know how we held it together enough to even stand up out of our chairs at the time.  On the way out of his office, the neurologist proceeded to tell us a Bill Clinton joke!  This guy deserves some type of punishment for his cruelty.  He has no compassion for anything or anybody.  Til this day, I haven't forgotten how we were treated that day!  I remember getting out of the office into the medical building's stairwell and just losing it.  I cried and screamed the rest of the day at work.  I asked, "How could God take Frank away from me, after he took my Dad away at a young age of 36.  Why?  Why?  Why?"

We stayed out of any doctors office for a little while.  Then someone recommended another neurologist in Providence, Rhode Island.  Frank went through so many tests and they couldn't come up with anything conclusive.  They still did not rule out ALS.  We learned a lot about this disease and now knew there was no cure or help.  We just lived day-to-day with this terrible dark cloud over us.

I read a lot of books, my favorite being, "Love, Medicine and Miracles" by Dr. Bernie Siegel.  At a time when we had not hope left, this book helped me to have a positive outlook.  I had to have that for Frank.  Somehow I had to make him feel better. Everyone should read this book.  It helped me through some very scary months.

Time went on and Frank was not getting much worse.  He decided to push the issue once again.  I can't remember all the details, but after several years of tests, etc.  (I don't want to drag my story out too long), Dr. Gorson diagnosed Frank with SBMA (Kennedy's Disease) in 1998.  We were in a study at St. Elizabeth's Medical Center with about 30 doctors in a room, examining and questioning Frank and I for about an hour.  Frank was so nervous, but the people there were very compassionate.  They were truly interested and wanted to help us.  That very afternoon they called us and told us not to worry about ALS anymore.  They wanted to do some more testing, but they assured us it was not ALS!!!  Thank you Jesus.  My prayers were answered!  It took Frank a good 6 months, anyway, to believe that he did not have ALS.  He could not get that diagnosis out of his mind.

Today he finally believes that that part is over and is coping with totally different issues.  He has his down days, but I really try to keep them to a minimum as well as I can with constant reassuring.  His major problem, like many others with Kennedy's, is stair climbing.  But I assure him everyday that we can live a wonderful life without climbing stairs!

Believe it or not, Frank is still enjoying his real passion:  downhill skiing.  With the help of a wonderful doctor who has made Frank leg braces that actually help him to stand.  Another ski season has come and gone and yes, he did it again this year.  Not an easy task by any means, but his love for the sport prevails.  Personally, I could never do it, it takes him at least an hour to get everything on.  

We really do have a wonderful life, wonderful family, two beautiful new nieces, identical twins!  Our motto is, "We are all in this together."  Our favorite hobby is boating.  We have lots of fun, spending time in Newport, Rhode Island and Block Island, Rhode Island.  Our pride and joy is our Golden Retriever named, Ali.  She is the sweetest thing you'd want to meet!  She is our full-time therapist now!  Hugging and loving Ali is great therapy. 

In closing, I just want to say that having Kennedy's Disease is not the worst thing; annoying for sure, but it could be so much worse.  Frank agrees with me on this one!  He is alive and I love waking up to him every morning.  God bless.

Email Alison Mercier-Pasiuk:  CARIB@PEOPLEPC.COM