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Living with KD

Personal Stories

Len Janicki, Born 1948 - NV, USA

Len Janicki, Born 1948 - NV, USA

My name is Len Janicki.  I originally lived in the Buffalo, New York area with my beautiful wife Jeanne, my confidant, best  friend and helper.  We have been Married for 29 years and have two married son's and two granddaughter’s, Emily and Abigail Rose.

Due primarily to Kennedy’s Disease, I took a disability retirement (SSD) on 29 October,1999 from my job as production manager of a medium sized printing company.  In September, 1994 I retired from the Army Reserve as a Lieutenant Colonel with 24 years service.  I was in excellent physical shape until about ten years ago, then I “got out of shape.”

My former hobbies were deer hunting, fishing, coaching youth baseball, playing softball, attending  Buffalo Bills games, following college basketball, socializing and local politics.  The last few years I’ve become more of a homebody.  Today my hobbies are more sedentary : reading, retirement planning, some volunteer work, traveling, travel planning for friends and I’m trying to teach myself  how to use a computer (poor teacher).  Let me take you on a chronological journey from my teens through today:

In my teens and early twenties I was very athletic participating in baseball, basketball, football and track at the high school and college intramural level.  Completed Army basic Training and Basic Officer courses in the top ten percentile.  However, speed was my forte, not distance.  I also began noticing leg cramps and tremors in my hands; nothing serious.

In my thirties, I was still in fairly good shape, still pretty fast and able to complete the APFT (Army physical fitness test). Cramping started to get worse and spread to my neck toes and arms.  The tremors started to get worse and some involuntary muscle twitching or movement began.  Back problems began in my late thirties after two falls, one off a ladder and one down the stairs carrying an air conditioner.  I seemed to be getting weaker and I  quit playing sports and started coaching. In my forties, I was still in the reserves (desk jobs) but physically out of shape and back problems began to limit my activity. I couldn’t run at full speed and I began to put on weight.  Cramps and twitches got worse and I started having problems with stairs and inclines.  I gave up deer hunting and sold my cabin.  When I couldn’t bend and lift I saw a rheumotologist who said  I was getting older and probably suffering from “Stiffman’s Syndrome (made it up?).  Later  I spent one week in the hospital with double pneumonia. Weakness and pain developed in my right arm, shoulder, and right ankle.

In January 1993 the real problems began.  Friends and I went to Las Vegas, then Drove to Pasadena, California to see the Bills in super Bowl 27.  We did a lot of walking around the grounds and the stadium stairs were a killer.  At game’s end I had a tough time walking on the uneven surfaces  back to the car. I needed numerous rest stops and help from my friends.  This was the first time my legs totally quit.

On 17 February, 1996 at 7:00p.m. I suffered a heart attack while enroute to a concert.  I pulled over and Jeanne drove me to the hospital where they administered TPA (wonder drug) and other treatments.  Five days in ICU and I was good to go, although very weak.  I attended cardiac rehab but couldn’t push myself beyond a certain point.  I assumed that the weakness was caused by the back problems.  I put in a pool and began swimming for exercise but I got weaker.  At one point my doctor, based on elevated CPK levels, thought I may have had a drinking problem.  Finally he decided to send me to a specialist that he studied under.

On 11 September 1996 I met with Dr. Carolyn Warner, a neurologist and the Director of the Erie County  MDA Clinic who promised me a diagnosis within two months.  (I think she had a good idea of my disease right then, as she had published a paper along with Dr. Fischbeck on Kennedy's Syndrome.)  After MRI’s, EMG’s, spinal tap and numerous tests, she almost had the answer, either ALS or Kennedy’s Disease.  A DNA test sent to Baylor University in November, 1996  revealed the good news.  I have Kennedy’s Disease (not as rare as I was led to believe).  After doing much research, I concluded that Life must go on.  In 1998 I was diagnosed with sleep apnea and I now use a BPAP to help breathing and stop sleeptime choking.  In March 1999, I was diagnosed with spinal stenosis, a narrowing of the spinal opening, which I assumed was causing the pain and weakness in the arm, shoulder and ankle and numbness in my right hand.

During the next few months I became weaker, couldn’t climb stairs, started falling more often and now I couldn’t getup.  Shaving, showering and dressing for work was exhausting.  It became too difficult.  So, I am now on Social Security Disability which, much to my surprise, was fairly easily obtained on the first attempt. I currently walk with a cane, more to keep me from falling, than need.  I know someday soon I’ll need a scooter or wheelchair, but for now I keep pushing.  Jeanne and I moved into a  smaller home on one floor plan, I wish it would have been in a warmer climate.  This past winter in Buffalo was the worst I remember; cold and very snowy.  Walking in snow is impossible for me, so I became a winter hermit.  In October  2001, I has a spinal laminectomy surgery to reopen the spinal canal and  help the spinal stenosis.  They did the surgery on my neck And it seemed successful.  However, two days later I became totally paralyzed in both arms.  After one week in the hospital I couldn’t feed myself or even lift anything.  I spent two weeks in a rehab nursing facility and after extremely hard work I am now able to use both arms.  The right arm is very weak and I now do most things left handed.

In August of 2000, Jeanne and I went to Las Vegas and met Susanne and Terry Waite and another sufferer of Kennedy’s disease, the first KD sufferers I ever met.  It was a relief to know that I was not alone.  Now, thanks to them, we all have the KDA.

In April 2002 we moved to SUN CITY/ Anthem in Henderson, Nevada, right outside of Las Vegas. Anyone wishing to contact me by phone, mail or e-mail please feel free to do so.  All my numbers are in the directory.  I any of you are planning a visit to the Las Vegas area, please let us know, maybe we can help with planning or even get together for dinner or drinks.  God bless all of you.

Len passed away at 9:15 PM PDT on Sunday, October 20th, 2013