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   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 couldn’t sleep so went to my Doctor and explained the situation to him; his response was “Don’t 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 P’ALS 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 don’t 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 RN’s 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.

    I was 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.

AN UPDATE:

  Well here it is June 5, 2005. I thought that it was about time to do an update on my story. First of all if you're reading this you will know that I created this web site in 2003. It has been a lot of work but worth every minute of it. The web site has been doing better than anything in my wildest dreams as you can see by the site counter on the index page. In May of 2002 I was asked to do the Canadian ALS March of Faces, which I continue to do to this day. This also has been a very successful project and to date we have 640+ pictures from across Canada on our Banners. I think this is one of the most successful awareness projects that we have here in Canada. Whenever I've been to an ALS function and the Banners are shown there is always a crowd of people around them. The only unfortunate part that I can see about doing these two projects is that my friends very seldom hear from me anymore via e-mail. I think they understand though and appreciate the fact that these things take so much time that I can only write now and then.

One thing that really stands out to me is the fact that so many people with ALS do not know about the ALS societies not only in Canada but also in the USA. The ALS societies have equipment pools and are there for people who need help with this disease. They can advise as to who we should see for certain things such as counseling etc., and this can take a lot of burden off the caregiver or other family members. The ALS societies in Canada are listed on this web site and I encourage anyone with ALS who has not joined the Society in your area to do so. Of course I also encourage anyone who has not taken part in the Canadian ALS March of Faces to do so as well. The ALS March of Faces however is a very personal thing and I completely understand if people do not want to take part in it, in fact I gave it some second thought before I joined it. There are so many things that we can do to help one another that just don't seem to get done. I think that peer-to-peer support would be a wonderful idea, however, due to privacy policies this just does not seem to get off the ground. Let me go on the record right here and say that if anyone ever wants to contact me I will certainly try to steer you in the right direction to get the help that you need. I know from personal experience that peer-to-peer counseling does work because I have a person with ALS who has visited with me on numerous occasions and he says that it helps him.

As for my ALS, it is still moving slowly and has affected my legs to the point where I cannot stand at the sink to shave or brush my teeth any longer. Also at this present time I'm having a lot of swelling in my right foot, which was the foot that first lead to my ALS diagnoses. It is also very painful, but was thoroughly checked out at the ALS clinic on my last visit and there doesn't seem to be anything wrong with it. So it is work at the computer when I can, for as long as I can, and then get the foot up in the air and wait for the swelling to go down. When I go out I have to use my walker although I still can use my canes in some cases if I don't have to walk too far. My original scooter as mentioned above has gone to the great scooter place in the sky. I now have a new one which is a four-wheel scooter and it is much more stable than the three wheel one. Of course I now wear the brunt of the jokes that I have outlived my scooter!

I still get questions from people wanting to know how I have managed to live so long with ALS. The short answer is… I have no idea! I promise everyone that I do not have a magic potion that I drink every morning and your guess is as good as mine. I am still not taking any drugs for the ALS and doubt very much that unless there is a drug that will cure it, I ever will be on any. Needless to say, I get all kinds of questions in regards to alternative treatments, drugs etc. Unfortunately there are none at the moment. And that is both a long and short answer to the question. Of course there are such things as massage therapy, aromatherapy and other such treatments which can, and do, make you feel good for a few hours or days and I have no objection to them. After all, we do deserve to feel good once in awhile. Over the years I've seen so many people spend literally thousands of dollars on what I call “snake oil”….to no avail. I often think if this money had been put towards research maybe we would now have a cure, but instead, the researchers are still diligently searching. Most of them are on limited budgets which really holds back research in my opinion.

2005 has not been a very good year for me in that I lost my Mother on February 1 and even though she was 91 and had lived a good life it was hard to say goodbye. Shirley then found out that she had to have an operation on her foot. A few days after that we went to get our eyes checked and found out that she has AMG (age-related macular degeneration) which is a disease of the eyes that will leave you with peripheral vision only. Of course, being Shirley, she worries about how I will be looked after instead of worrying about herself. I think that she can draw a certain amount of strength from me in the way that I've dealt with ALS. It has and always will be “one day at a time” and we will get through this just as we have got through other things.

One last thing in closing, I hope that anyone with ALS who is reading this will consider writing their own story and allowing me to put it up on this site so others can see how you deal with ALS. I think it is very important to share our ideas and thoughts with others.

AN UPDATE:

Update as of January 28, 2006:

As most of you know through my newsletters there have been changes in my journey with ALS, some of them good, and some not so good. Most of my problems have been non-ALS related such as a go-around with kidney stones.  I think everyone with ALS has their up days and their down days. Sometimes it seems that there are more down days than up.  However, the ALS is still progressing relatively slowly and I expect to be around for some time yet. 

It has now been in excess of 15 years since diagnosis and the most significant change that it is giving me a problem is my legs.  On my spring visit to the ALS clinic it was recommended that I go to a power wheelchair.  I took this pretty hard, likely harder than I really should have, given the fact that after 14 years and carrying all my weight on my left side this was to be expected.  Unfortunately, prior to getting all the power chair paperwork and necessary documentation in place I broke my ankle.  Maybe the good thing is that there seems to be a flurry of activity to get all this equipment in place now.  I have always been a proponent of getting things prior to needing them. Well, I slipped and never even seen this one coming! 

I guess we're all allowed to make a mistake now and then and as near as I can tell this is the first one for 2006 (Haw Haw). I have to be very careful however as usually I only make two mistakes per year and we were not even halfway through 2006 yet.  I was taking the blame for the broken ankle but after some hard thought it turns out it was not really my mistake anyway, so I guess I can write that off and still have two to go. Shirley had asked me to pick up a couple cases of water at the store and that is what caused my fall I feel that the blame has to fall on her!  It is a wonderful thing to have someone with you who can take some ribbing and have a laugh about it as well.  My upper body strength, breathing and swallowing remains just as strong as can be expected… and possibly even a little stronger.

Moving on into the year in September, I was hit with a bout of pneumonia, I waited a bit too long on this one in going to the hospital and paid for it (mistake number one). Moving on with non-ALS problems I am right now dealing with (of all things) a heart attack!  This would prove to be a whole story on it’s own so suffice it to say that I think that it is under control now.

Some time ago I made an application to the Access Clinic here in Hamilton and received a computer equipped with Dragon speech recognition.  This has proven to be a real bonus to me and I use it constantly. For those of you who do not know, ALS patients move to the front of the line at the Access Clinic simply because of the nature of the disease and how fast it moves.  Because my legs and more especially my hip were giving me a lot of problems when I sat at the computer for any length of time, I decided that likely a laptop computer would be the best option.  The clinic took the PC back and supplied me with a laptop computer which has proven to be one of the best moves I ever made.  I can sit in a recliner or put the foot and head up on my hospital bed without having any pressure on my hips and lower spine.  Being pain-free is definitely a bonus that I did not expect to have some time ago.  I would highly recommend anyone who has trouble typing because of lack of use of their hands, but whose voice is relatively strong, to look into this program.  You have absolutely nothing to lose and everything to gain.  Granted the program does make the occasional mistake but hopefully people understand this and work with you.

As most of you know I have been doing posters using the ALS March of Faces pictures which make them much more personal to the communities that they are used in.  I started doing these three or four years ago, the first being for an ALS Walk in Sudbury, Ontario.  In 2006 in conjunction with ALS Canada the posters were accepted for use across Canada in the Walk for ALS.  Some provinces such as Newfoundland swear by these posters, others are not so sure.  This year a couple of new provinces have come on board namely ALS Ontario and ALS B.C.  Is that a lot of work?  You’re darn right it is!! Is it worth it? Boy is it ever!! People can see not only from the March of Faces banners but also from the posters just how many people actually are still living with ALS, as well as those who have lost their battle to the disease. 

I feel that as long as I have these projects, along with the web site, to keep me occupied I really don't have much time to worry about my condition.  I would be a liar if I said I don't think of it because I do… sometimes more than others.  To see certain freedoms slip away is a hard thing to deal with.  I feel, however, that having survived for 15 years and still being able to get around relatively well, another 15 years in a power wheelchair will not be too bad and I am sure I can handle that. Too often we tend to blame everything on ALS, not so in most cases above.  There are usually good things that out weigh the bad.  I was nominated by ALS Canada and received a Volunteer Award from the Government of Ontario.  I was also elected to the position of First Vice President of the ALS March of Faces which is a project that is near and dear to my heart.

As most of you know I do sterling silver casting and for the past four or five years after coming up with the brainwave for the ALS jewellery, that has been all that I've been doing.  This year I made up my mind that I would give up doing the ALS jewellery and concentrate on doing things of my own design.  I will not only cast the sterling silver findings but polish the stones as well.  While I'm still able I want to be able to do both of these hobbies in order to do some creations of my own.  I am afraid I never put a whole lot of thought into it when I started the ALS jewellery and the impact it would have, such as the amount of casting that was needed and the time involved.  As a parting gesture I donated 10 sets of ALS jewellery on a “first come first served” basis to people across Canada to use as fundraising items.  As it turned out 10 sets of jewellery grew into 13; there are just some people that are so close to me, how do you say no?  At any rate, anybody with this jewellery now has a collector’s item.  Of course I never rule out the possibility of doing some of that again… but certainly not exclusively.  It was fun at the start, but as with anything else, repetition seems to take the enjoyment out of it and doing just one thing over and over again did start to get boring.

So that is pretty much an update on not only my condition but what I have been up to, which according to Shirley, is “no good” at times.  I do have to add in this update, however, that I don't know what I would have done without Shirley.  She just seems to take everything in her stride, and although I hate to bother her… if I don't, I hear about it in no uncertain terms.  We try to enjoy every day to the best of our ability.  When I have one of those “off days” she knows to avoid me but when the good days come around we enjoy each other's company and have some good laughs.  Shirley being from the United States makes it easy to pull a few little jokes on her in regards to different things that happen in Canada.  She asked me one time why we have a holiday on the first weekend in August.  I told her that because it was so cold and snowy here in the winter they gave us an extra holiday in the summer to make up for it.  Lo and behold I caught her telling her friend in Florida what the holiday was for and I had to come clean on that one!

"The R's of life: it's Romance at 25; Rent at 35; and Rheumatism at 65." Anonymous

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