I'm Dick Phillips of Seattle, Washington. I was diagnosed with ALS just
9 days ago, on 9/17/01.
Needless to say, I haven't yet fully come to terms with my sentence.
How will I cope? Well, I'll say this. If God wanted to take me away,
I think ALS might be his
choice for a person who has always been known as a thinker. He is
giving me time for my wife
and me to say 10,000 goodbyes, time to write up that "where's the money"
document, and time
to work on building up a network of support for my wife.
Am I bitter. Oddly, no. I have not once said "why me" or "life is
unfair". At 63 years of age, I will
be leaving a little early, but not much. And I will have had a very
good life, married to the same
woman for 42 years, good-enough career, enjoying 7+ years of happy
I will be going to a once-a-week meeting on something to do with
Christianity only because a good
friend asked me to. I am not an active Christian and I doubt if I will
be able to make a miraculous
leap of faith even in the face of death.
I plan to order the books on ALS from ALSA, and also to go to a support
group meeting at least
once. You see, I haven't really cried yet. But if I meet another
person with ALS, I know I will cry
for that person and, maybe, for myself.
Best Regards, Dick
Yes i would be glad to share with you about my husband jim. he has
been in wheelchair for 2 years before diagnosis about 2 months ago. he is
now on bipap, assist control noninvasive ventilator, the newest technology.
his vital capacity was 20% when he had feeding tube put in. he can still
swallow but has trouble chewing. right now i only give him water thru tube.
i have been only caregiver up till 2 months ago, now i have help getting him
up to commode shair, which is roll in shower chair. i dont know how long he
has left, but now hospice is coming in to help me. i love him so much but
we both know that now we can only keep him comfortable. this is the most
cruel disease. i would love to share how you are coping and how yours
started. his started in legs and worked up to arms. now he can only move
left arm slightly. we should have got 2nd opinion, but i guess there is
nothing they could have done anyway. email me soon,
Well regarding ALS. I'm sorry to know that you were diagnosed with ALS. My sister-in-law has it and I, along with several other close friends and family, are Kathy's main caregivers. She was diagnosed in January, 1999 - close to your date. She is 51 and her symptoms started in her arms, hands, neck, shoulders (basically her entire upper body). She has deteriorated since her dx and now cannot use her arms and hands. She can keep her head up but it is getting harder and harder. (She has two different neck braces). Her speech is affected and she has trouble swallowing. Her diet is only liquids (a Cheeto or two here and there as well) and she refuses to have the feeding tube. Her legs are strong and this is what keeps her moving.
If this information is helpful for your web site please feel free to use it. You may want to contact her directly. By use of an adaptive devise, she is able to maneuver her lap top and has become quite good at using her foot! She is unbelievable. I admire her courage to continue her fight with ALS. As caregivers, we tend to do as much as we can to assist our loved one. However, we sometimes we get frustrated with the medical community. I'm sure you can relate to that.
My name is Jesse. I'm a US Marine and stationed in Camp Pendleton California. In August of this year, my grandfather collapsed at his home in Reno, Nv due to a large amount of Co2 in his lungs. I flew up to Reno that weekend. During that weekend I spent countless hours researching neuromuscular diseases. After about two weeks and a lot of tests my grandfather was diagnosed with ALS. At first it hit me really hard. I thought immediately that I had already lost my grandfather, which was the biggest mistake. He is still alive so I figure that I should be thankful for that and enjoy the time that I do have with him, however long that may be. We recently move him a little bit closer to his family so that they could spend more time with him. Recently, he went into respiratory failure. He no longer has the strength to breath on his on, and is on a ventilator. I still cherish the time that I can spend with him, which makes it a little easier. I also did a lot or research on the disease, and found that that also helped. I cant say that it is easy to see him like this, but I know that if and when he goes, that he will be in a much more beautiful place than here. God has been the biggest help. I constantly pray, and it eases the hurt. It will always hurt, but knowledge, time, and god give me the most comfort in coping.
My story about the person I know that has ALS is as
I know a man named Bill that has ALS. I never knew
much about this disease, and I wanted to find out
more. I found out that this is a very devestating
disease, but it can be helped. I talked with Bill
alot, and I found out that he is a very loving, caring
person. All people with ALS derserve to be treated
with respect, but don't all people? Bill has no use of
his hands,which makes every simple thing a challenge.
We hope and pray for all ALS patients that we can
someday find a cure for this.
John, thanks for giving me this opportunity.