My name is Keith Plimmer and I am 58 years old. I grew up in Hawaii and spent most of my adult life moving from place to place and job to job, traveling a bit in between. I have lived in Montana, Hawaii, California and Rhode Island. I have seen every state and traveled the globe. My final occupation was Director of Operations for XP Power, a power solutions company and manufacturer. Our main focus is custom power supplies for military, medical and industrial applications. We have factories in China, Vietnam and Taiwan with distribution centers in Germany, Singapore and the USA.

 

I stopped working in 2012 due to my inability to travel and other restrictions created by this illness.  In 2006 at age 46, I began noticing weakness in my legs and torso as I was completing my normal workouts at the gym. Shortly after that stairs were measurably harder to climb. I visited Palo Alto Medical Clinic and Stanford Medical where they concluded I had Limb Girdle Muscular Dystrophy as my father had. He died from complications at age 59. 

 

As the disease slowly revealed itself, I began noticing things that made no sense in regards to the diagnosis and discussed it with my neurologist. He referred me to another specialist who diagnosed me with MS, but a spinal tap and MRI negated that diagnosis. After many referrals, tests and no real answers, I was sent to Mayo Clinic. I was in Rochester, Minnesota for a week of tests, biopsies, etc. Three months later, Mayo contacted me in regards to my diagnosis, and it was VCP gene mutation - IBMPFD. Now things were making sense, as I had a lot of symptoms of MS or Parkinson’s along with my muscle weakness. 

 

My father’s family has had numerous diagnoses that really were VCP disease, but back then they didn’t know of the gene mutation. Four of the five siblings had Parkinson’s, Dementia, LGMD or some form of Dystrophy. All four died from complications related to their illness. My father was one of five siblings, and there are eight children from those five. Two have passed at ages 59 and 60 one male, one female. Of the six cousins living including myself, one female has minor symptoms in addition to my brother and me who have tested positive.

 

I was very active prior to the illness: surfing, skiing, boxing and motorcycle riding. For the first 5 years of my leave from work, I went to every event I could: concerts, sports, car shows etc. I was never in one place and took full advantage of the ability to walk and get around and travel. 

 

I now spend most of my time reading and go to an occasional concert, car show or ball game. I have found that scheduling events has become difficult, as I cannot guess how my body will feel from day to day. I fight the disease by stretching, breathing and walking with a walker. I take numerous vitamins and supplements that seem to be helping. My biggest problem is pain and spasms but I do my best to overcome them and stay active. 

 

When I found out Nathan was organizing a non-profit, I was excited to get involved.  I had started a similar project a few years ago, but I am glad that Nathan has taken this so far in such a short time. I sincerely hope we can achieve the goals set forth and one day find a cure for this rare and often undiagnosed disease