Caring for John Jenkins

As many of you may know John Jenkins was recently diagnosed with ALS (Amyotrophic Lateral Sclerosis) commonly known as Lou Gehrig's disease.  His family and friends are starting a fundraising campaign to help John with medical expenses and other necessities that will enable him to lead a good quality of life.  We are asking for your donations to relieve John of financial burdens so that he can concentrate on his health.  We appreciate any support you can give.


In John's own words:

i am
i am no longer

I am from San Ildefonso and Santa Clara.
I am all the usual husband, son, father, grandfather, brother, uncle, etc.

I am a wood carver, photographer, pencil artist, and knapper of obsidian points.
I am a participant in our Pueblo ceremonies.
I am a maker of arrowheads and spear points from obsidian as  our ancestors did.  I use some modern materials to make the points but the end results are very similar.  I am in awe of the talent they had.

Ironically I have gone from the Stone Age to the Nuclear Age and back again to the Stone Age.  By this I mean that I grew up amongst the sandstone formations of Arizona in places such as Sedona, Monument Valley, and Shonto.  I then spent the last 28 years working at the Los Alamos National Laboratory hence the Nuclear Age.  Now that I am no longer working, as I am on medical disability, I am back to knapping stone.


I am no longer a hunter, builder, hiker, adventurer, dancer, singer, beater of drums nor a biker.

The symptoms started around two years ago, but I had no idea that it was something so debilitating.  I would get severe cramps after exercise.  I thought I was out of shape.  My left foot started dropping and I started using a brace.  Then, one day I got a cramp in my shin and as I was rubbing it the muscle loss was noticeable.  I knew something else was wrong.  I went to the doctor and we started looking for causes.

In October of last year, after a summer of going to a series of specialists, I was diagnosed with the motor neuron disease, ALS.  After my diagnosis I was hesitant to let anyone know as I was feeling embarrassed, depressed, and kind of hopeless.  I was also hoping for a cure and I didn't want to bother people if it could be fixed.  After much thought and not able to hide my problem anymore, I decided to let people know about my condition.  I started with my immediate family and my kiva groups.  I decided to leave it there, however, many community members were concerned as they saw me struggling to walk and not doing the things I should be doing.  

Let me tell you a little about the disease.  It is a terminal, progressive motor neuron disease that affects the brain's ability to send signals to the muscles to move.  This causes the muscles to wither away or atrophy.  In the worst cases this disease kills you within 3-5 years of diagnosis.  As of yet there is no known cause and there is no cure. 

However, there are less aggressive forms , one of which is what I have.  The form I have starts with the legs.  In my case the motor neurons that the brain sends out to the leg muscles do not function properly.  This causes my leg muscles to weaken and then to atrophy.  As this disease's progression rate is so unpredictable my doctor's have advised me to do the things I want to do in this life NOW!
 
My symptoms currently include heavy loss of muscle in the legs,  foot drop, and loss of grip strength in my left hand.   Eventually the loss of muscle will progress up my body, weakening my arms.  The disease will then progress to the point where I will require breathing tubes and feeding tubes.  In time, I will need help to take care of my body.  As of now I can no longer use my left leg to walk or stand.  I have been using my right leg to do all the work.  The disease has progressed to the point where my right leg is showing signs of weakness.  My left hand is losing the ability to squeeze properly.  I cramp up alot in my hands and legs.

You know that feeling that you get when you get in the car and turn the key and nothing happens?  You try and try but nothing   The battery is dead.  That is how I feel.  My brain turns the key, sends the message for my leg to move, but nothing happens - the legs don't respond.

I have begun to use mechanical means to get around.  I currently use a foot and knee brace to help my left leg with mobility. I use a walker for balance and to keep me from falling.  When I do fall I find it very, very hard to stand up again.  I crawl to the nearest solid support so that I can use my arms to help me get to a standing position. 

I have purchased a chair that helps me to a standing position but I need help with several other purchases to allow for a better quality of life.  My legs are both failing and I now require a manual wheelchair.  I will also be looking to purchase an electric powered wheelchair as the disease progresses. 

We are hoping to raise enough funds to help cover the following expenses:

Current:
Co-pays for doctor visits
Gas, food, and lodging to see specialists
Co-pays for medical supplies
Walkers
Specialized foot and knee braces
Manual wheelchair
Powered wheelchair
Carrier and ramps
Protein drinks
Medical massage to keep legs limber
Acupuncture
Ramps
Bathroom renovation for wheelchair access
Lift chair

Late stage progression:
Adult diapers
Feeding tubes
Breathing apparatus
Hospital bed
In home care

I am over the worst part - being depressed, feeling sorry for myself, not letting people know what is wrong  and being hesitant to ask for help.  I can tell you I have great family support and this allows me to deal with this disease emotionally and I am grateful for their help.  They have encouraged me not to give up and to FIGHT!  I realize the battle will eventually be lost but I am determined to fight till the very end.  This determination drives me as I would like to see my children and grandchildren grow.  As my grandson Aleister said, "I love my Poppa because he used to crawl on the ground with me to play with the cars and trucks.  We had fun."

As a note of hope and faith, my family has funded a trip in October to send me to Lourdes, France to make the pilgrimage to bathe in the healing waters established by Saint Bernadette as directed by the Lady of the Immaculate Conception.

For more information about ALS visit WebMD .

I and my family thank you for your support and your prayers.