Diagnosis is without a doubt the toughest part of ALS and the most traumatic. I did have a very kind person to give me the verdict and that was Dr. Strong at the ALS Clinic in London. I have, however, heard of more than a few who have had experiences that are, to say the least, shocking. I am not sure why this happens but as stated above, I have a theory but whether it is true or not, well, your guess is as good as mine.
I really don’t think a lot of doctors, neurologists included, have a lot of experience with ALS. As you know and have been through, it is a process of elimination to find ALS… when there is nothing left then it is ALS.
I feel that those doctors who do not have a lot, if any, experience with ALS do the next best thing (in their eyes) nothing. They will tell you that you have ALS but I am not so sure that they know what to do next. They usually lack the knowledge to give you informed advice so give you a pamphlet and send you on your way with an appointment to an ALS Clinic.
Of course this is traumatic; when a doctor cannot give you informed advice just how in the devil can you find informed advice? Where do you look and if you do have a clue as to where to look, do you really feel like looking? The short answer is likely not, you have been told that you have 2 – 5 years to live, you are in utter shock and they expect you to read a pamphlet!
The ALS Clinics will give you sound and good advice but it still does not remove the things that most, if not all of us, go through. The denial etc. etc. that we all hear about. I went through it and most people with ALS that I talk to also go through it.
There is no cure and we know that. And yet there are any number of people out there who offer cures, for a price of course and not a cheap price I am afraid. I have corresponded with people who have spent thousands of dollars and quite frankly are no better off. Well, I should rephrase that, they are worse off as most of them go through their life savings for nothing.
Family Doctors mean so well but let’s face it, if a G.P. sees one case of ALS in his/her whole career he/she is lucky, the person diagnosed is unlucky. I know that my G.P. means so well but most of what he knows about ALS is from what I have told him. I don’t think that this is their fault it is just the nature of the beast, if you never see a disease why spend a lot of time researching it.
One of my worst symptoms was that I could not sleep at night. A lot of that is due to the fact that you start thinking of how you are going to do this or that, what will happen when you are gone, and all sorts of things that the dark of night brings out. The advice that I was given was “don’t worry” about it. I can tell all of you reading this not to “worry about it” and I would be willing to bet anything that there is not one of you who would be able to take that advice. By the way my Family Doctor is a gem of a guy and I am in no way trying to imply that he is not.
Well now that I have ripped up the medical community, what can you do to help yourself?
I think that the first thing to do is get very well prepared for what ever will come your way. You will have to do a number of things for this:
Join your local ALS Society and let them know that you have ALS. You might not need help right away or, as in my case, I have needed very little help for some 12 or more years, but I know that they will be there when I need them and believe me I will need them. They have equipment pools and knowledge to draw on.
If you think that you will need a piece of equipment (and your Clinic will tell you what you will need) make preparations to get this equipment NOW. Don’t wait until you need it and then have to wait for a month or maybe a lot longer to get it. For the lack of a walker or some such item you could be almost bed-bound and waiting while it is supplied. I used a walker as an example but really it is the bigger ticket items that take the time, hospital beds etc.
ALS is not a contagious disease and there is nothing to be ashamed of because you have it. I say this because I have a friend who was ashamed to go to church because people looked at her “funny”. This lady had a problem with uncontrollable laughter or crying which is an ALS symptom. I told her that the people who made fun of her were the ones to be pitied and not her. She continued on to start a large support group and has won an awareness award for her work. Now who is laughing?
It took me some time to admit to people that I had ALS and quite often I was asked what was wrong with me and I was actually embarrassed by that. Not any more, I am not ashamed to tell people that I have ALS and I am not ashamed to ask these same people for donations for the Walks. I have come to realize that we do need more awareness, although there is a lot more now than ever before. That will be another story!
Slow down and smell the roses, we all think that we can still do the same things that we were doing a few years ago. To shorten this paragraph, you can’t …so don’t try.
I go through periods when I just want to be left alone, usually not for any great length of time, but alone none the less. I have explained this to my family and they respect that. If I am in “one of those moods” I just go to the bedroom, shut the door and everyone knows what is going on and just let me work it out on my own.
On the other hand, your spouse or primary Caregiver needs time for himself or herself as well. I am extremely lucky as far as Shirley goes and almost have to tell her to get out for a while just to give her a break. Too much time together is sometimes not the best thing either and we all need a little space at times. Remember this disease can be, and is, just as traumatic for the Caregiver as the Person with ALS.
I hope that this has helped some of you through the difficult process of being diagnosed and trying to sort out just what you have to do. If I left anything out, which I probably did, please do not hesitate to drop me an e-mail. The mailbox on the front page is there for that specific reason. The only question that I hope you won’t ask is “how come I am still around ?”. Just to put that to rest… I have no idea. I do not take any medications other than vitamin pills and do not have a secret cure.
Take it from me; if I did I would not be spending all these hours on the computer trying to raise awareness!
"The whole secret of life is to be interested in one thing profoundly and in a thousand things well." Horace Walpole
© ALS Independence 2003-12