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Distinguished member
Apr 26, 2004
I've been reading these boards since the spring. I started out by reading back awhile to get a feel for who everyone is etc. But, by the time I got to the present I was lost. Between everyone's sign on name vs. real name (i.e. Timshelper is Kim) and similar sign on names like TBear and Bear2, I couldn't remeber who everyone was. Hopefully I don't sound crazy by getting confused over this!

Anyway, I was originally staying a bit anonymous for a variety of reasons but I'd like to get to know everyone better. If any of you regulars (or visitors for that matter) feel the same then please post below.

Since it was my idea, I'll start!

My name is Melissa and I live in southeastern Michigan. I am a Psychosocial Rehabilitation Specialist. Basically, I work in a program with adults with mental illness teaching rehabilitation of job skills, social skills and more. It's really great work but emotionally draining at times.

I am 28 years old. My husband has been having some odd symptoms for about a year now. We went through numerous tests this past spring only to find that everything is normal. We have not had all the possible testing but the neurologists we've seen so far seem to attribute the symptoms to stress or emotional difficulties. He had a neuropsychological test which showed there were some issues that could be dealt with (ie. loss of job) and he has been seeing the psychologist for about 6 months now. He is also 28 years old.

Many things have improved with him but other things have not. In fact, this weekend when we were relaxing in London Ontario, he ended up having me drive home because he was feeling so bad. Cramping of his feet and arms for example. He also had to ask me to help him undo a button recently.

We are trying to live as normal and have more testing when the time is right. He really gets sick of visiting doctors, especially when they can't find anything. I guess only time will tell anyway.

In the meantime, I've met some of "the gang" as Al says and you all are such great and wonderful people. I feel a special place in my heart for Carol (we've been emailing throughout the summer) but you all seem great and I'd like to stay connected, especially since I still have some inner worries about what is going on with my husband.

Well, that's enough to absorb for now I guess. I hope some others will share (or reshare for some) their stories. Thanks, Melissa (aka me)
Hi Melissa:
I'm in!
My name is Ted (go figure) and I live in the tiny town of Uxbridge, about 3/4 hour northeast of Toronto. I'm a geoscientist with the MNR and work in the field of Remote Sensing and Mapping. I get to fly around in airplanes and helicopters looking for and counting all sorts of natural resource stuff like trees, rocks, moose, deer, polar bears and hamsters. I was a helicopter pilot for a few years before I went back to school and just for fun I went to U of M for engineering courses so I know all the great places to drink in Ann Arbor.
In 1997, my wife of 20 years developed ALS and passed away in 2001. I was her primary caregiver and managed to keep her home (and at our cottage on Lake of Bays... her favorite place) throughout the whole thing (except for a couple of days in the hospital for a g-tube installation.) She was treated at the Sunnybrooke ALS clinic so we are familiar with the people there and at Mike Strong's clinic in London. We have 3 daughters 24, 21 and 19. They are all at university. One at Queens and two at McGill. I am 53 and figure that I can help with any problems that I might have experience with... other than that it's all pure comic relief...
I'll add more later...

Getting to know you

Hi my name is Kim and I am Tims helper and he will be living with me in a short time since he has no family here. He has had it going on now into his 4th year. I live in Moose Jaw, SK and I am a pharmaceutical technician. I joined the forum when I heard Tim had ALS and met Carol who has become a freind and coach. Tim just turned 40 and is the apple of my eye because he can always make me smile even though he has ALS. I've actually left my husband just so I can be with my best freind, thats how important he is to me. Thanks Melissa this was a good idea. There is so much knowledge on this forum and now when you see where people work and what they have had to go through its just makes everyone so much stonger personally and intellectual.
ALS about loving someone :D
Hi, I will join in also. Melissa, great idea, I had the same problem sorting out who was who. Al gave me a boost, as did some of the members when I asked.
I am, for personal reasons for the on-line public, sticking with the name I am using here. Privately, some have my real name.
I am a single mother of four, the final child soon to be a teenager, they range from 19- almost 13. I live in Brampton Ontario. Been on my own for more than a year and have a very busy life balancing work and childrens schedule. If I was paid for all the driving around I do, I would be a millionaire. I work for a financial institution.
I am here because I have a close friend who was diagnosed about a year ago with ALS. Was somewhat familiar with the disease, I had heard about it, as I knew someone years ago who was stricken with it.
I joined the forum for answers, information, pose questions. My biggest difficulty in the process is I do not have the data I need from him. I have yet to determine exactly why that is, and have remained in passive mode, asking soft questions when I can. I have been waiting for him to totally open up, there have been some oddicies which I have asked privately to some members of the forum, and between what briefly I have seen, and what others inflicted with this have mentioned, I am questioning this diagnosis. He was very ill about a year and a half ago, tired was all I was told. The original diagnosis was MS, but after months of rest and doctors, he seemed to perk up. He worked, I expect had some bad days, we were estranged for some time earlier this year, but from what I have witnessed, is not showing the symptoms which coordinate with this. I may be wrong, probably am, but according to him, his symptoms did not follow MS, and thus, from further testing, what those were is beyond me, was greeted with ALS. All I can say at this point in time, is I have had enough of the secrecy, enough of my questions not being answered and have in my own way now demanded full disclosure.
Many of you on the forum, of course, have been devestated by the diagnosis. The thoughts of loosing their spouse totally overwhelming. But I witnessed first hand at a support group meeting, that their love, determination, and help are stronger then any medication which can be prescribed. For me, well, due to our circumstances, were planning on a life together a few years down the road. I wonder now, if we will get that far. But my children, and his, have to come first, I question if we will ever really get off the ground. I am willing to take on the challenges, (Kim, I have some questions for you when I have the time, maybe a private email), but will that opportunity ever come for us? Only time will tell.
T bear...comic relief to laugh...
That is it for me for now...
Thanks guys for the replys. It is helping my brain sort out the names! Ted, the comic relief is so helpful. As I've read the last few months it is great to see people keeping the humor amidst the other emotions. It's good to know there can be both!

Kim - that is so great you are offering the support you are.

Theresa - It sounds like a struggle. I hope the gang here can at least offer encouragement and I'm sure there are some with answers to questions.

Where are the rest of you? :p
Guess it's my turn. Al - 55 yr. old retired Fire Captain. Had a quad by-pass in 99 and never went back on the trucks. Messed around at odd jobs in the fire dept. until June of 03 and retired. Diagnosed with ALS in Oct. 03. Happy retirement present Al. Married 34 years to Lee. Daughter 30 is an R.N works part time at that and is a Advanced Care Paramedic full time. She married a Police Officer last Dec. and we built a basement apt. in their new house with the intention of parking our furniture and cats and travelling. Have managed a bit of that but not enough. Son 33 is living in the Philippines and he and another guy from Brampton own a web site design business over there. His girlfriend is expecting in late Mar. and I hope I am well enough to get over for the wedding and birth. We were in the phillipines in Dec.02/Jan03 when I first noticed the fasciculations that led to the diagnosis. Had to give up my pilot's licence and scuba diving but still can ride a motorcycle and tried skydiving in Sept. am still walking around ok although my hands and breathing are giving me trouble. Go to the Sunnybrooke clinic and see Dr Gawell. Guess that's about all for me. Take care everyone.
My name is Elaine.I've been married for 35 years to a wonderful man, Maurice.We have two children Nicole and Michael.Our daughter Nicole Is legally blind.When she was born the cord was around her neck cutting off oxygen to the brain.She is a very independent woman,married to a wonderful man Bill.Our son Michael was born with a very rare kidney disease.Ten years ago I donated one of my kidneys to him,five years latter he got an infection and lost the kidney.He's on dialysis now waiting for a new kidney.He also is a very positive person he goes to work everyday and always with a smile on his face.
This summer I was diagnosed with als.I was devestated.All the emotions,
First, all I did, was say to myself I'm going to die,I'm going to die.
I kept asking, why me?there has to be a mistake and then I was mad.What did I ever do to deserve this.Then gradually I've come to accept it.I'm a little stronger now thanks to the support group.I'm still working.I really don't know how long I will be able to work.My speech is the problem.I'll have to learn sign language sometimes we have to do that at work anyways.Ha Ha
Theresa,I was like your friend I didn't want anyone to know.Just be there for him,I guess being a man it's harder to talk about things .It's very hard to accept.
Thanks Jane for your kind message. Love to you all
Hello everyone, guess I will get on the info bandwagon. Will stick with Jane (like it better than real name!). Worked several years in long term care , loved it, retired at hubby's request. 4 years ago. Have 2 sons, one married with a lovely wife and 2 wonderful grandchildren.
I saw the Sue Rodriquez story and was somewhat familiar with ALS. Sis was diagnosed in Sept. /03. Limb onset now into bulbar as well. As you all know it is a horrible devastating disease. It takes such a toll on the entire family, we are fortunate to have a close family and all pitch in to help in any possible way.
The idea of getting to know each other is great . Perhaps we can arrange to chat on the new site, set up a time and really talk!.
All of the people here have been wonderful they are so informative and kind and supportive. Each of you have a part in this board let's keep it going strong. and continue to help each out.
Carol prayers are with you, Henry and your family Jane
Hi everyone.

What a great idea Melissa! I guess I'll take a shot at this too!

My dad was just diagnosed with ALS this July. He has bulbar ALS and has more and more difficulty eating and talking. In the last couple of months he has lost most of the strength in one arm and the deterioration has started in his other arm. We didn't expect this to progress so quickly as the doctors told him it seemed to be slow moving.

I have a couple of older brothers and I'm the youngest and only daughter. I'm married and have an eight year old son and we live in Cape Breton. My Mom and Dad live about 20 miles from us so we get over often. The thing is they are "Snowbirds" and just headed "south" this week. They usually go for 6 months but they don't expect to be able to stay too long this time around. I am fearful of the change that I will see when I next see them.
I just want to say once again what a wonderful source of information and support this forum is. It was the best place I found while searching the net for information from people who actually know first hand about ALS.
Keep it up everyone, you help in ways you can't imagine, Thank you all!

Reply for theresa

Hi Theresa,
Anytime you woulk like to talk I check my emails everyday. My address is [email protected]. It seems like you and myself are in the same predicament in away. I was just over visiting Tim and he is not doing very well so I suspect he will be living with me soon but he is so stubborn and does not want to leave his house. Although I don't blame him I wouldn't want to leave my house either.I think I'm going to take a home care course just so I have extra knowlege when it comes to the way of lifting if I need too and whatever else they can teach me. Medications wil not be a problem for me although he hates taking them.
Kim Tims helper
ALS about loving someone

My heart sings with joy and happiness to see that the forum is alive and kicking. This makes me feel soooooo good. I am almost in tears to see that "OUR GANG" has kept this chain alive.

Well, okay since everyone else is telling their story, I may as well indulge you all as well. My real name is Giselle, and I do runway and Sports Illustrated modelling. Yes, Yes, thats me on the new issue. Don't I look great? It is hard to be so bedso beautiful and so smart too!You all know me as carol Deboer, and that is my real name. Actually, my real name is Mrs. Henry Deboer, and I just turned the "big Fat 50" my friends and family say I act like 20. But,hey, I just go with the flow. I am a resturant Manager for the HBC CorpDoration. I am actually a gold seal trained Italtian cook. Hows that folks? Drop by anytime for pasta. Bring the wine and I'll cook. we have 3 children, Jeff, 24, Mike 21, Aly, 16. Henry just celebrated a birthday on Nov, 1.

As you may have all noticed I have not been around much. Things here are progressing . I haven't had the time to post or rest or do much. We have had some complications with the tube and other things. It is just time now that I must spend with Henry. I do love you all, and I do miss you all like crazy. Kim, my computer is still down. will let you know the minute I am up and running again. I thought that I should drop you all a quick line to check in, and fill you all in on our status. Jane, I still think that we should do that online chat thing every week. One hour, I could manage that. Let me know. Love and hugs to melissa, you could probably have reached out and touched me when you drove through Sarnia. Ted, as always, keep us smilin......Al and Lee, keep up the fight. And to all that post on a regular basis, you have made my dream come true. How simple is that......... Must run, God Bless, and please keep us in your prayers and in your hearts, we need your support now more than ever. xoxoxoxox

Love, Mrs. Henry Deboer aka Carol
Carol - It was soooo good to hear from you. I'm sure we all understand your need to be with your family right now. We're still thinking about you though, and hope you will return to us when able. I have learned so much from you just in this short time.

Is there anyone else out there reading this forum but not posting? There are so many people viewing, I'm wondering if it's the same 10 people reading and re-reading or if we have hundreds that never post. It would be great for this group to grow. Join us if you're just a reader. -me-
Hi i'm Fisher a 52 year old male from Grand Bend Ont. recently married to a gal named Linda and i like to drink wine on the deck on hot Sunny days. it just doesn't taste the same now that the weather has changed.

I was finally diagnosed in Aug. 2003 after many mris and emgs. originally diagnosedg was ms but after a long argument with Dr.Rice, finally got to see Dr.Strong and he confirmed our worst fear. started out with a limp in the spring of 2001 and now i am in a wheel chair can't move my arms and now can barely speak.
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Hi everyone,

I have been reading on this site for about a month now but posted only once.

My brother has ALS he just turned 47 on Nov. 6. He was diagnosed in Jan 2003 after several months of tests. He has bulbar ALS so already he cannot speak, lift his arms, hold a pen or other things... Thanks to technology he can use a special mouse, it's like a T joy stick for his computer, however he needs us to put his hand on the joy stick. He can barely walk. He insists on using the walker but it is painful to see him struggle, on step...We have to put his hands on the handles of the walker, help him stand up (he can't on his own). He has a wheelchair but does not like using it, although lately he has been sitting in it to watch TV.
He does not have a feeding tube (he is not interested in one...although we think even if he wanted one now, it would be too late and couldn't not be "installed"). He is not taking any medication because he really does not see the point since it's not going to change the end result.

It started with him slurring his speech, he actually thought that he perhaps had a small stroke...He speeks (spoke) 6 languages and noticed that there were certain words he couldn't pronounce in german when he was in Germany the summer prior to being then progressed to his right hand ,couldn't grip pens, or the chalk (he was a high school teacher, is now retired...) than his right shoulder (couldn't lift his arm to high...then it went to his left shoulder and arm, the legs are the last things to go but he is getting weaker and weaker. What he could do 2 weeks ago he can't do now...He has a lot of problem swallowing and all his food has to be liquified in the blender...

Sorry to go on and on, it's the first time I really sum everything up...

Anyways he is in Ottawa (where I grew up) and I now live in Calgary. I have been to see him practically every 2 weeks. I just got back Wednesday from spending a week with him and will return in a couple of weeks. He is single and would like to stay at home. A good friend of his and I are taking turn staying with him at night as it is no longer safe for him to be alone. ...

I'm encouraged by the support, the courage and hope I see on this forum and hope that I can be of help as well...

By the way, Carol, my real name is Gisele (but I am not 'the' Giselle, the model

Take care everyonem,

Fisher; I have been wondering for months just who the heck you were. Now I know. A fellow wine drinker (red I hope) Merlot is preferable. It is nice to put a bit of a picture of who you are in my mind. As you might have noticed Tbear and I have sort have monopolized this site recently. Just friendly kind of guys I guess. Now that you are in off the deck we might hear a bit more from you. I have found this to be a friendly place. Kind of like the deck. Warm, bright and a few good friends. What more can we ask for. A hundred thousand in the bank would be good but I'll settle for what I've got. To Giselle you might not be a world class model but you sound like a world class sister. You are obviously a beautiful person inside. I hope your brother has registered with the ALS group in Ottawa. I met some of them recently and they are a great bunch of people. They can offer some support and could help with care issues. Hope everyone is ok and take care. Al.
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