As of right now we really don't have much. She was diagnosed last Friday and
they said it is either that or some extrememly rare "designer disease"
whatever the heck that is. They are expecting the final results from a blood
test next week, but the doctors said to count on ALS. She is exhibiting
textbook signs and is either deteriorating rapidly or she has had it for a
while and we didn't see the signs.
The first thing I remember noticing was at my brother in law's wedding, June
2000, that she seemed to be losing lots of weight and was somewhat
underweight. When I asked her what was going on she said she didn't know.
She said she couldn't keep weight on for some reason. Other than that, there
was no weakness that we were aware of. In April, we noticed that she wasn't
herself and she couldn't seem to remember anything. Our concern was
Alzheimers. She taught school right up until April this year, so it wasn't
really bad, she just wasn't herself. Now she is being fitted for braces
because her feet "flop". She is extrememly weak and she chokes when she
eats. We are also seeing increasing signs of dementia. We are unsure if
this relates at all to the ALS. We know a young man with it who is sharp as
a tack but the doctors don't seem to have many answers for us at the moment.
My father and mother in law live in So. California but we have asked if they
would consider moving to Washington State to be closer to us and our 3 sons.
We want to participate in her care. They are strongly considering it. They
love the Pacific Northwest and she is originally from Seattle.
Needless to say this has been very difficult for my husband. They are very
close! As I am sure you know, the scariest part is the unknown. We are
trying to educate ourselves on the internet but even then, we don't know what
applies to her. If you know of any other sights that might help us, we would
greatly appreciate it.
I wish you much luck and send prayers for you in your fight against this
Lori Johnson, FALS
My name is Tommy and I got the diagnose ALS 9/2000 , but I had the dicease since ?1997-98 thats hard to say ,because when did it start? .When you suddenly got tired when doing something you normally not should get tired of.
I was driving as long distance truckdriver around Europe and when you driving most of the time you have a lot of time to observe what is happening with yourself and your surroundings. So in 1997-98-99 it started that I couldnt put coffee in my cup and later I couldnt even lift my cup. Then I got nervous and had contact with my doctor who send me to the Hospital for a larger investigation of my fys. They said I had a disc problem ,so I got a MRI scan (magnetic ) and after a consultation with a Professor in Neurologi (he was a chirurg )who told me to take a couple of tablets and come visit him in a couple of years , then this condition would be normal again. This I did not take for good, so I contacted a neurology in Poland ( Im married with a Polish woman ), and after 30-40 min. of examination she could tell me that I had a disorder who gave me a loss of my muscles, and she told me to when I came home to Denmark I should take contact with my doctor and get a electricmyografi (EMG, electric impulses with needles in your muscles ) and this turned out negative and the Fysisian put me in Hospital. After a lot of examination in a period of 14 days I was diagnosed ALS (9/2000).
Today 1 year after Im weaker but not yet in a wheelchair but Im very active in the organisation we have in Denmark because I want to help other people not just ALS patients but also the family members that offcause gets involved in this dicease.
Theres a lot of aspects to take care of , because not everybody like to almost get a date of the day when they are going to die, I know because Im scared to death of this. But as time goes by and you see whats happening to your body You have to accept this (no one else are doing this for You) But remember your mind is not infected with this disease!!!! So when your finished being established with the things that help your daily needs, do like Im doing go help others in the same situation, give them trix and hints that helped your day. Help spouses ,family members and other people who are involved with the disease. If you can do these things the normal day and the isolation and the final day is a little longer away.
I know when Im going once a week to horseback riding with all my fellow patients all what I discibed before are a long way away. Be active in your community, in administration, sports, oldercare, handicap care or what you can find to activate yourself. Remember its only your body that gets weaker your mind and interlect gets stronger if you want it to be.
As a lot of ALS users in Denmark says Al Liv Svinder it says All Life Disapears and it is only to hardend yourself because I know its only said for being ironic. BE ACTIVE OR LOOSE YOURSELF thats my motto.The only one that takes care of your mind is yourself.
Im sorry for my spelling but I hope you understand the larger meaning.
Tommy Pedersen, PALS
My name is Crystal and I live in Denver Colorado. In
1982, I started having symptoms of weakness, twitching
and different sensations in my fingers. I was running
in the park that summer and my left leg didn't want to
work correct. I also noticed a few weeks later that my
speech was slower and the walking was off balance.
Slowly I was having difficulties and the doctors
thought it was multiple sclerosis. In 1984 after
numerous tests, being alone - I had heard the
devastating news that it was ALS from a specialist.
During these years, I have decided to do whatever it
takes to stay alive. The first Hope was putting my
faith in a higher power, instead of believing the
statistics of ALS lifespan that the doctor told me. (
2 to 3 years)
I knew in my heart that I was not going to die right
away, because I know that Jesus Christ wants me well.
I started working out, eating healthy foods and taking
alot of vitamins. Well, twenty years later I am still
What I am saying to anyone who has been touched by
this horrible disease - Don't Give UP no matter what
kind of a sentence was put on you. I believe that you
have a major role in determining your destiny.
I'll be happy to share with you our experience with ALS. My husband was dx with als in Jan,2000, after a year believing he had a stroke. First Neuro.( I call him Dr.gloom and doom) said there was nothing he could do, and turned us back over to our family Dr. Our family Dr. is wonderful, but lacks knowledge about this disease. After another year, we found another Neuro. He was very nice, but told us to find someone who had more experience...hence we found Dr. Nash at Ohio State Univ. Nick"s problems started with speech and swallowing. Both are terrible now. He has also just about lost the use of his hands. But he can still walk some. Thank God...our daughter is getting married Oct. 13, and I've really been praying he can walk her down the isle). As to coping...that's a tough one. Nick is 61, and has always been so healthy and active, so it truly is difficult for him not being able to do so many things for himself. I quit my job a year and a half ago. so I can stay here and take care of him. It is very hard sometimes, especially when I don't get enough sleep, but I will continue to care for him until I have to get some help. We find something to laugh about every day. He has such a good sence of humor (one of the things that attractrd me to him 39 years ago). When he gets down and worries about being a bother, I tell him it's truly an honor to take care of him. He took care of me every day and still does with his love. We both believe if everyone knew what Heaven is like, there would be a lot of people trying to get there right now. Didn't mean to make this so long, John. I wish you all God's peace with this horrible disease. Don't give up or in. There may be a cure tomorrow.
my name is Erin. I'm 16 years old, and my dad has had ALS for about 10 years. Coping with this disease has been really difficult, but over the years it has become an everyday part of my life. My dad is 52 years old, and is in Metropolitan Hospital in Grand Rapids, Mi where he has lived for the past 8 years. Before he moved to the hospital, he lived in a nursing home, but one night he went into a coma and was taken to the hospital. I don't get to see my dad as often as I would like to because the hospital is 45 min. away, and between school and work, I don't get have much time for anything. That is where my computer comes in. I find it really amazing that someone who is paralyzed from the neck down, is on a ventilator, has a feeding tube, and can't even talk, is able to email his family every day. But somehow he does it. We email eachother every day, which makes things alot easier.
It's been hard going through school and hearing my friends talk about their dad's and then they realize that I'm standing right there and they start apologizing. People think that I should be depressed and sad all the time, which is understandable. But it really bothers me when they treat me like I'm different just because my dad has ALS. I guess they'd have to be in my position to understand. But it is nice to know that there are people that care enough to ask me regularly how my dad is doing.
The worst part about my dad's situation is that I don't really have any memories of when my dad still lived with me. I vividly remember certain things, but it hurts to know that when I get older and have children of my own, I won't be able to talk about all the great times I've had with my dad. I mean, we've had great times, but not like 'normal' people do. The hospital takes him out fishing sometimes, and that's fun. And sometimes we go to baseball games. And one day a year, he comes home for the afternoon and we have a big party. He loves coming home and seeing everyone.
A lot of people sometimes ask me how I would feel if my dad were to pass away. And the more I think about that question, the more confused I get...I mean...of course I don't want my dad to die, but in a way, I do. He's suffering so much, and I know that he would be so much happier in heaven. But I just don't know what I would do without him.