Lou Gehrig & Me , Old friends ? No never met the man he was a little before my time and I don't play baseball either . But I do have his disease
or more accurately the disease that he is known for , Amyotrophic Lateral Sclerosis or A L S . I present this information for my friends who are concerned but afraid to ask and for anyone anywhere , so as they may understand
me and others like myself and what we must endure.
I will give you a brief description of this disease it's symptoms and how it has affected me so far and my Battle plan.
What is ALS?
Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease,"
is a progressive neurodegenerative disease that attacks nerve cells in the brain
and the spinal cord. Motor neurons reach from the brain to the spinal cord and
from the spinal cord to the muscles throughout the body. The progressive
degeneration of the motor neurons in ALS eventually lead to their death. When
the motor neurons die, the ability of the brain to initiate and control muscle
movement is lost. With all voluntary muscle action affected, patients in the later
stages of the disease become totally paralyzed. Yet, through it all, for the vast
majority of people, their minds remain unaffected.
A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo"
refers to muscle, and "Trophic" means nourishment---"No muscle nourishment."
When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral"
identifies the areas in a person's spinal cord where portions of the nerve cells that
nourish the muscles are located. As this area degenerates it leads to scarring or
hardening ("sclerosis") in the region.
As motor neurons degenerate, they can no longer send impulses to the muscle
fibers that normally result in muscle movement. Early symptoms of ALS often
include increasing muscle weakness, especially involving the arms and legs,
speech, swallowing and breathing. When muscles no longer receive the
messages from the motor neurons that they require to function, the muscles
begin to atrophy (waste away). Limbs begin to look "thinner" as muscle tissue
Initial Symptoms of the Disease:
At the onset of ALS the symptoms may be so slight that they are frequently
overlooked. With regard to the appearance of symptoms and the progression of
the illness, the course of the disease may include the following:
muscle weakness in one or more of the following: hands, arms, legs or the
muscles of speech, swallowing or breathing
twitching (fasciculation) and cramping of muscles, especially those in the
hands and feet
impairment of the use of the arms and legs
"thick speech" and difficulty in projecting the voice
in more advanced stages, shortness of breath, difficulty in breathing and
The initial symptoms of ALS can be quite varied in different people. One person
may experience tripping over carpet edges, another person may have trouble
lifting and a third person's early symptom may be slurred speech. The rate at
which ALS progresses can be quite variable from one person to another. Although
the mean survival time with ALS is three to five years, many people live five, ten or
more years. In a small number of people, ALS is known to remit or halt its
progression, though there is no scientific understanding as to how and why this
happens. Symptoms can begin in the muscles of speech, swallowing or in the
hands, arms, legs or feet. Not all people with ALS experience the same
symptoms or the same sequences or patterns of progression. But, progressive
muscle weakness and paralysis are universally experienced.
Muscle weakness is a hallmark initial sign in ALS, occurring in approximately
60% of patients. Early symptoms vary with each individual, but usually include
tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred
speech, muscle cramps and twitches and/or uncontrollable periods of laughing or
The hands and feet may be affected first, causing difficulty in lifting, walking or
using the hands for the activities of daily living such as dressing, washing and
As the weakening and paralysis continue to spread to the muscles of the trunk of
the body the disease, eventually affects speech, swallowing, chewing and
breathing. When the breathing muscles become affected, ultimately, the patient
will need permanent ventilatory support in order to survive.
Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste
and smell are not affected. For many people, muscles of the eyes and bladder are
generally not affected.
For the vast majority of people, their mind and thoughts are not impaired and
remain sharp despite the progressive degenerating condition of the body.
Facts About ALS:
The onset of ALS is insidious with muscle weakness or stiffness as early
symptoms. Inevitable progression of wasting and paralysis of the muscles
of the limbs and trunk as well as those that control vital functions such as
speech, swallowing and breathing follows.
In most people, mental faculties are not affected. Also, ALS is not
It is estimated that ALS is responsible for nearly two deaths per hundred
thousand population annually. More people die every year of ALS than of
Huntington's disease or multiple sclerosis.
A little over 5,000 people in the U.S. are diagnosed with ALS each year.
The incidence of ALS (two per 100,000 people) is five times higher than
Huntington's disease and about equal to multiple sclerosis. The prevalence
of ALS is six to eight cases per 100,000 population per year.
The life expectancy of an ALS patient averages about three to five years
from the time of diagnosis. Half of all affected live more than three years
About twenty percent of people with ALS live five years or more and up to
ten percent will survive more than ten years and five percent will live 20
years. There are people in whom ALS has stopped progressing and a
small number of people in whom the symptoms of ALS reversed.
ALS occurs throughout the world with no racial, ethnic or socioeconomic
ALS can strike anyone. Someone you know or love could die from ALS
unless a cure or prevention is found.
Present treatment of ALS is aimed at symptomatic relief, prevention of
complications and maintenance of maximum optimal function and optimal
quality of life. Most of this, in the later stages, requires nursing
management of a patient who is alert but functionally quadriplegic with
intact sensory function, bedridden and aware he or she is going to die.
In 1991 a team of ALSA-funded researchers linked familial ALS to
chromosome 21. In 1993 the research team identified a defective SOD1
gene on chromosome 21 as responsible for many cases of familial ALS.
Further study indicated over 60 mutations (structural defects) in the SOD
(superoxide dismutase) enzyme which alters the enzyme's ability to
protect against free radical damage to motor neurons. These studies open
possibilities for future therapies or strategies to effectively mediate both
familial and sporadic ALS. But much more research on the SOD enzyme
is needed. Also, researchers have not ruled out other gene involvement (on
other chromosomes) in ALS.
The financial cost to families of persons with ALS is exceedingly high. It is
estimated that in the advanced stages, care can cost an average of
$200,000 a year. Patients' and relatives' entire savings are quickly depleted
because of the extraordinary cost involved in the care of ALS patients.
Rilutek®, the first treatment to alter the course of ALS, was approved by
the FDA in late 1995. This antiglutamate drug appears to prolong the life of
persons with ALS by at least a few months and more recent studies
suggest Rilutek® slows the progress of ALS, allowing the patient more
time in the higher functioning states. Rilutek is manufactured by
Rhône-Poulenc Rorer.The cost for a one month supply is aproximately $400.00
My personal history :
I'm 46 yrs. old never been married and have no dependants . I was what we called a flower child in the 60's and I did inhale. My parents grew up through the depression
and World War 2 . They got divorced when I was 12 yrs.old .My farther died when I was 23 yrs. old and my mother is surviving in an elderly housing project , she is 78 yrs. young .
I do not use drugs , alcohol or tobacco products .It has been about six 6 months since I was first diagnosed with A.L.S.
I had been working in the construction industry as an Industrial electrician when the first symptoms came about.
My hands began to cramp up and I had thought this to be arthritis .I started to have tremors in my hands and arms The symptoms progressed and I began to loose the use of my fingers
of my right hand the left hand followed suite and eventually I lost most all of my strength in my arms .The tremors are now more pronounced and are noticeable in my legs as well.
I'm experiencing some difficulty in breathing .It is becoming extremely difficult for me to perform simple tasks involving the use of my hands
ie: buttoning up my shirt and tying my shoes opening jars and things wrapped in plastic can be very challenging.
Lately I have just started experiencing some noticeable weakness in my legs.
/UPDATE 12,25,00/ Over the course of the past year I have gradually lost the use of my legs.
I can stand up from an elevated position and shuffle about from one room to another . I can no longer step up and I'am experiencing great difficulty in standing for any length of time . I have had to get a bench for the shower as I can no longer stand up to wash. I long for a nice hot soak in the tub.
I recently found myself traped on the toilet seat ,unable to stand up , so now I have a seat extension with arms which is very uncomfortable but it beats the alternative .I was finnally able to get a BIPAP machiene , a kind of respirator that helps me breathe at night.Most all upper body
strength is gone and I have lost most of the functional strength in my hands./ I have no insurance and I have spent what little savings I had. I'm on social security disability.
If I could afford it I would like to get on the Rilutek
/UPDATE ,May 2000/ I have applied for and recieved
help from the N.O.R.D.(national organization for rare disorders Inc.)and the manufacturer in the form of a one years supply of rilutek .
/UPDATE , Dec. 2001/ The Rilutek caused more problems (stomache bloating,weakness,dizzieness) and did not appear to have any immeadiate benefit .I have discontinued it's use . Well I have been in a wheelchair now for about 6 six months . I gradually lost what ability I had to walk .I was falling down all the time. I could not get up off the floor by myself . So before I injured myself severly and exhusted the goodwill of the friends
that would come and rescue me , I thought that the time had come to get into the "CHAIR" . At first I was able to tranfer myself to and from bed,bath,etc. But lately I have had to have help getting in & out of it. I'm greatefull for the friends that have come to my aid ,I thank the lord for their help .
I don't know what I would do without them .
My Social Death:
Before it was known that I had this disease or rather that I made it known that I had this disease I was socially very active. I did not have an abundance of friends but about twelve or so acquaintances half of whom I would consider close friends. Friday evenings were always very active,
usually with one or two of the boys stopping by my apartment for a few brews and to bullshit. Saturdays and Sunday’s I was busy fishing, working on cars or trucks or other projects. My ham radio friends would stop by to play with the radio talk about radios etc. and in general my slate was
fairly full most of the time. Gradually ,as my condition became known to everyone I began to see less and less of people. No one would call wanting to go out to the bar or to hangout. The ham radio friends all went somewhere else to play ham radio. Of the six or so that did hang around
and promise to be helpful and to do all kinds of things for me there has been only but three that have stayed with me. The people that I thought that I could count on for help and felt as though I could depend on them always being there disappeared .The ones that I was not so sure of were
the ones that came through true blue. I am not cynical and bare no malice I think it is human nature and just accept things for what they are. I’m grateful for the support and friends that come to my aid.
My Battle Plan :
It is very frustrating trying to fight this thing .I have always been a man of small stature 5'7" tall and 150 lbs. or less . Never been a bully but was always ready to stand up for the underdog
and myself . Not afraid to mix it up with anything or anybody .
At first when confronted with my own demise I was knocked down to my knees .I was staggered by the first blow , but I'm back on my feet now ! The first few rounds have gone to my opponent with nearly a punch thrown in defense . I have been doing my homework
however and have learned some moves of my own . I'm concentrating on diet , nutritional and vitamin supplementals . I'm taking things one day at a time sometimes one hour at a time and trying to maintain a good positive mental attitude is I believe a priority .
I'm at peace with god and do not fear my death , I just would like my life to have had a bit more meaning and continue my search to this end .The following is a list of supplementals I'm currently taking.
Last Update 4/2003
This is an aggresive antioxident
approach .From what I have read this type of cocktail seems to be the most promising homeopathic treatment.
2 two Multi Vitamin(Multigenics IC/Without iron)
4 four 750 mg. Creatine
1 one 250 mg. Acetyl-L-carnitine
1 one 1,000 iu. E
1 one 1,000 mg. Salmon Oil EPA/DHA
1 one 200 mg. Coenzyme Q-10
( Pain Management )
1 one 200 mg. Celebrex
2 two Multi Vitamin
1 one 250 mg. Acetyl-L-carnitine
4 four 750 mg. Creatine
2 two 25 mg. Grapeseed extract / W pinebark
1 one 200 mg. Coenzyme Q-10
( Pain Management )
1 one 50 mg. Ultram(if needed)
2 two Multi Vitamin
1 one 1,000 mg. Time release C w/rose hips
1 one 200 mg. Alpha Lipoic acid
( Pain Management )
1 one 5mg.valium(diazapalm)
My many thanks to those of you who have given me a helping hand .No matter what degree of support you have given it has been appreciated . I thank you for your Prayers and best whishes and I thank God everyday that there are people out there with love and compassion in their hearts .
May God bless you all with health and prosperity .
With Love your friend ,
Jay G. Bainbridge
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