Dear Friends, I am writing to express my deepest gratitude on behalf of everyone in the Johnson family for the genuine show of compassion and support you have given us during difficult times since my diagnosis with terminal Liver Cancer. From the moment my Mother was found to have ALS, everyone at Living with ALS have been a constant source of inspiration and hope when we needed it the most. I have been actively involved in community service for more than 30 years and can honestly say that the finest individuals I have had the honor to work with with are right here. Whether my focus is on local or national issues, it is a true pleasure to give of my time to such caring and committed people as yourself.
No one can predict when my time on this earth will end. However, I believe there is much work left to do. I Have always felt a continuous desire to serve others. It is a passion which burns deep inside of me. To be given but one more opportunity to assist those most in need will help me stay alive while providing an invaluable humanitarian effort to children whom I cherish the most.
I would like to form a foundation which allows parents who have been diagnosed with ALS to make a wish for their children. I am aware of similar programs which exist. However, they focus upon other illnesses. It is no secret that ALS affects the entire family unit unlike no other disease process. To see a child have their wish granted, one which a endearing relative made on their behalf would bring a world of hope and humanity to a world filled with pain when it comes to ALS.
Speaking from personal experience, I can tell you the horrific times our own daughter went through as her only Grandmother progressed from walker to wheelchair and eventually was bed-ridden. Rachael was 7 when Mom was diagnosed. Try telling a child so young and fragile why her beloved Grandmother can no longer hold a book, cuddle her at night or participate fully in family activities.
This is a scenario which is repeated countless times throughout homes in our nation. I would honored if such a foundation would be called the "Ray-Jay Wish Foundation" after my daughter, Rachael Johnson. Everytime a wish was fulfilled she would have the satisfaction of knowing both her Father and Grandmother had started something good for so many others. However, foundation names are not important. It is the focus of the foundation which matters most.
I thank you for considering my proposal and again offer my sincerest gratitude for your support during these difficult times. While I have accepted my diagnosis, I can not accept the fact that I must sit around and wait for the time to arrive. I am committed to fight both for an extension to my life and for the betterment of PALS and their families. Working together, we will emerge victorious!
Paul Johnson RN, C/FALS
I was diagnosed in 86 but continued working as a coal miner until late 87 when I was forced to retire. I became vent dependent March of 93 but despite the vent we remain very active as a family. Deb and I have a daughter and son who are 14&12 that keep us busy with their school and sports activities. We also camp, fish, hunt, go snow skiing, ice skating and go to the stock car races to watch my brothers race every chance we get during the season. Of course I don't actively participate but I'm right there sharing the experience! Deb and I met in Jr High and dated all through High School then married in 86. Deb is my primary care giver, when Deb's at work my Mom stays with me in case I need suctioned. We have no professional/medical care givers outside of friends and family. I'm still able to operate my power wheelchair myself and I use E Z Keys software, on a laptop mounted on my wheelchair, for communication, typing and surfing the net. Life is really good for me thanks to great friends and fantastic family!
Dave Queen, PALS
This is my story and how I have dealt with the diagnosis of Amyotrophic Lateral Sclerosis. My symptoms started in 1989 and at that time I was working in construction (drywall, steel studs, insulation and suspended ceilings). I first started noticing that I would trip and fall over the smallest items such as pieces of wire and other things common to all construction sites. I also noticed that I was tripping over the cracks in sidewalks and was getting very unstable on my feet. I was concerned enough to go to my family Doctor and he in turn referred me to a Neurologist and then the tests began. And oh boy, were there some tests! The first was the EMG. This was done by my Neurologist, can you believe, it 12 times! The nurse told me that I hold the record at the Hospital. I told her that they could go for coffee the next time and I would do the test myself. The conclusions were that I had ALS - like symptoms but there were doubts that it was in fact ALS.
The next step was to have an operation on my knee by a Plastic Surgeon; this would do the trick I was assured. Strange as it may sound it did do the trick for about a week or so. I was able to walk again and did so with great gusto all the way up the mountain, all 600 odd steps of it, what a joy! The next day the foot started to drop again, darn, maybe I overdid it! At that time it was decided that I should wear a drop foot brace and that would do the trick. Well that was tried and the result was a huge callous on my heel that is still there; off the shelf foot braces just do not do the trick sometimes. Then I was fitted for a custom made brace and that has served me well over the years.
My Doctor then decided that it was about time to see a specialist as this whole thing had been going on at this point for almost 3 years. She made an appointment with Dr. Michael J. Strong at the ALS Clinic in London University Hospital. It was off to London and their battery of tests. Within a day or so I received a call from Dr. Strong confirming that it was indeed ALS. My first question was What does that mean? The short answer was a life expectancy of 2 to 5 years. Devastation!! What do I do? Who will look after my family? Do I accept life support? Have I got a will? Did I pay the cable bill this month? Is the phone still hooked up? Everything and anything goes through your mind!
I couldnt sleep so went to my Doctor and explained the situation to him; his response was Dont worry about it, just put it out of your mind. Sure easy for him to say. Not quite that easy to practise though, and I have spent many sleepless nights since.
My next appointment was in London in three months and at that time nothing significant was noticed other than weakness in my right hand. Everything else seemed to be staying quite stable, thank God. In the period of time since my first visit I had sort of given in to the fact that I was a goner. After the second meeting I thought, well I can still get around, and I am not tripping as much anymore, so why not give work another shot. Actually I did pretty well except for stairs, they are the downfall (sometimes very literally) of me. If I had to go to a job with stairs I just had to refuse it because by the time I got to the top of them I had to stop for coffee.
As time went on nothing seemed to be getting a whole lot worse (although in actual fact they were but not that I could notice). My stamina was down, but, hey, I am getting older too, so have that to blame it on.
By this time the common things that the average PALS go through had run their course. Denial, withdrawal and just downright anger at it all. Just after I had been diagnosed I met a man with ALS and he said things to me that just did not sit right. I decided then and there that I would do my best to be as upbeat as possible, treat people with respect and maintain my own dignity. I think that I can safely say that I have pretty much managed to do those things; the operative words here are pretty much. My family knows when I feel like being alone and God bless them for respecting that and they leave me alone until the situation is resolved. Of course the situation is almost always one that is between my ears so sometimes it is a little hard to find and resolve. I think that I have the usual symptoms of ALS leg and foot cramps, loss of sleep, too much sleep, and a few other strange things. My doctor has given me quinine sulphate for the leg cramps and that seems to keep them under control. This may not work for everyone but it sure does for me. I can guarantee that there is nothing worse than a cramp in a foot that you cannot move at 3.00am in the morning when it is black as pitch in the room.
As my progression is very slow they have put me in a three-wheel scooter and I manage to get everywhere that I want to go on that. This works well for me but for some it is a definite no-no. They are, for one thing, a little tipsy (again, first hand experience) also, if you are starting to have trouble sitting up they are not very good for that. At any rate it works well for me.
I guess that what I am trying to say is that what works for one may not necessarily work for another. I have gone on no drug trials and this is my own choice for a specific reason. I wonder if, since my ALS is progressing very slowly, will drugs trigger it? I have no idea and I am not going to take the chance and find out. Of course I have had the usual spills and falls, one of which broke a small bone in the side of my foot. It happened while I was alone one evening and I thought (Dr. George speaking here) that if I could just get into bed it would be well in the morning. Well, another mis-diagnosis so it was a trip for X rays and the word was that nothing could be done other than wait for it to heal. Two months later and I was hale and hardy again.
I must say that through the ten years of this disease I have had my share of bad luck and also my share of good luck. I have found that if you are dealing with Government agencies patience is a virtue. Unfortunately I am not a very patient person and do like to have things done yesterday. I was married to my first wife for 32 years and she passed away very suddenly a little over two years ago (diagnosed with liver cancer and passed away within 3 weeks). That was a down point in this whole thing as of course I needed a caregiver and so my son moved in with me. The wrath of the Government came down in full force at that point in time, my Ontario Disability Allowance was cut almost in half and, as I live in subsidized housing and my Son was working, his salary was taken into consideration and so my rent doubled. Not being one to back down from a good battle I did just that and am pleased to say that the situation was resolved within a mere 8 months, in MY favour. Just prior to my battle with the Government I bought an old used computer, and also thank God that I did that. It enabled me to better write and fight my battles. As well it gave me some much-needed relaxation and I began playing cribbage with a woman from Edmonton. I have to say she was my crutch and it goes to show that help can come from all directions. We played cribbage most nights for an hour or so and still to this day get the odd game in. Also I got involved with a group called Big Heart, which was, and again the operative word is (was) a medical site where all diseases had input. The support there was phenomenal and I started my own Community at the site and did hours of research into different web sites to list for others to find information from. I would, at a rough guess, say that I had over a hundred links on that site. We managed to get a pretty good rapport going among the ALS people there and at least one of the people that I dealt with has gone on to bigger and better things starting a support group in Kentucky. Because of all this bickering back and forth I really did neglect my health and at one time was almost put in the hospital because of it, I was after all below 120 lbs. I have since met (through the internet) and married a wonderful lady from Florida and have been going the Department of Immigration route with her. Anyone who has had dealings with them will know what I am talking about when I say dont hold your breath or you will be very blue in the face waiting to get action. After about 14 months I think that we have that one under control now. To emphasise the good part of this I am now weighing in at about 160 lbs. So, all in all, I have had some pretty interesting, devastating, and even some downright funny things happen to me since the onset of this disease.
I have to admit that I follow all the latest news reports and read what I can on the subject and am often amused at some of the things that are said. So many people blame the disease on tooth fillings; well I have a mouth full of those. A lot blame it on chipping paint while in the Navy, well I spent 10 years there and chipped paint with the best of them. I also have done my share of fibreglass insulation and it would not surprise me if all the pipes in the older ships had asbestos wrapping on them. It is a little known fact that a lot of buildings, especially Government buildings, put a lead sheet between the top of all walls and the ceiling for sound proofing, in the mean time the air that people breath is circulated around that lead. I have put up a few tons of that as well. Do I blame any of these things for my condition? Not really. There just has not been enough proof to cause me to consider one or all of these as proof that they are a cause of ALS. Everyone seems to have an opinion on what the cause is and believe it or not in the past 10 years I have seen some enormous strides made in awareness of the disease. Awareness means money for research and research means a cure. We all have to realize that we are in a group that the medical community knows very little about. We have an exotic disease and one that does not get the news coverage that a majority of the others do. We have to bring awareness to ourselves by our courage to carry on and stay alive. Hopefully, we are beginning anew with a will to cooperate among ourselves and make people see us for what we are, broken bodies with strong minds. The finding of the SOD1 gene is a start off point for research; if detecting this gene in familial ALS will succeed then the next step will be to take it to another level, to the random cases of ALS.
In closing I just want to add a few very random observations. Family Doctors if they are lucky (or in our case unlucky) may never see one case of ALS in their whole career. Many within the medical community as a whole are neither trained nor have been educated to deal with this disease. Many Homecare providers likewise know little about this disease and it is often hard for them to comprehend the speed at which it moves in some cases. I have talked to RNs who have no idea what ALS is. I have also talked to Nurses from the Victorian Order of Nurses that have no idea what the disease is or what it does.
I think that we, as PALS, have to get out and spread the word. Some of my fellow PALS are going to schools and giving lectures about ALS. What better place to show the devastation experienced not only by the PALS but also by the families of those affected. I myself am helping a student do a paper on ALS as a school project. And last but by no means least it is known not only as ALS, but also MND, and Lou Gehrigs disease, the latter likely being the most commonly used name and if that description fits the disease by all means use it, at least people will know what you are talking about.
At this time I am the volunteer web master of the ALS Society of Ontario web site. My hobbies are stone polishing as well as doing lost wax silver casting thus creating silver jewellery. I try to keep busy and have a huge address book of friends across the country, the majority of them with ALS. You will be hearing from some of them on this web site and I hope that you will read their messages thoroughly. They are not quitters not one of them we have all fought tooth and nail to try and beat this disease and I will admit that this alone sometimes is not enough. We have each lost friends this year to this disease but that does not mean that we will go down without a fight, at least not me anyway.
George Goodwin, PALS