O.K, so you have been diagnosed with A.L.S. You have been told that you have two to five years to live, now what do you do? Likely go through denial, anger and the full gambit of emotions. That will take some time. You will then probably decide that there is a lot to be done and not much time to do it. So this is what I did...
I met (by chance) a person with A.L.S. and he had a very poor outlook on life, he was to say the least, miserable and made others around him feel bad as well. That might just have been my perception (he knew that I had been recently diagnosed) and he went to all extents to let me know what was in store for me. Not very pleasant at that particular time and I did not see him again after that time.
Two to five years is an average; I have met some people that have died in 3 – 6 months, and others who have been around since the 80’s. So don’t give up the ship just yet as you do not know just where in this category you may fall.
Dr. Strong has said that there seems to be a different life span between males and females of a certain age diagnosed with single limb onset. This does not end with just that example. It seems like the researchers are looking at about 8 such leads. So are they dealing with one disease or are there variations of the same disease?
At any rate now is the time to get your house in order, there is a good Booklet on the Booklets page of my website for Estate planning, do it.
No matter what you choose (and this is a personal thing) make sure that your family and more especially your primary caregiver know what you have decided and write it down. If, as in my case, you live much longer you can always change it later.
I think that over the years I have changed my mind at least 5 times and quite frankly this is a tough thing to do. You see someone who gets along so very well on feeding tubes and ventilators etc. and you think you could do that too. Then you will see someone who is going through hell on them so you get out the eraser.
If you are like me then this decision is kept between Shirley and me and my boys. It is a private matter that no one else has the right to or the need to know.
Some might consider donating their body to research; I don’t mind telling you that I have done this. If it helps find a cure for a friend then I have no problem with it. Again, a personal choice and really no one’s business except for you and your Care giver (and in this case all who are now reading this article)!
Try to stay active, if it means very passive exercise or if it means pushing yourself to the limit do what you have to do to satisfy your own objectives. But please take care not to play yourself completely out because it is a lot harder to recover when you have A.L.S. My biggest complaint is not with getting angry at my Care giver or anyone else, it is getting angry at myself for not being able to do things that I used to be able to do, and it is frustrating to say the least.
Make sure that you have the right equipment for your needs; this is where your initial contact with your local A.L.S. Society will come into play. This could be years from diagnosis or a matter of weeks. Remember the first part and the estimates? Well, now you will start to find out where you are on that graph.
Remember that in some cases A.L.S moves faster than you can get the equipment you need. This means thinking ahead all the time, some PALS quite frankly do not get any of the equipment that would have made life a whole lot easier for them because they waited too long in ordering it.
If you have a primary Care giver, for their sake and yours, try to have a back up plan so that they can get a break now and then as well. Hopefully other family members will step forward at this time and you will also certainly find out who your true friends are.
Care giving has to be a two way street, you as a PALS should try and do as much as possible for yourself for as long as possible. Sometimes this will be tough but it at least shows that you are trying to be of some assistance.
I find that I do not lash out at my Care giver but more at myself. I find that I can no longer do the things that I used to be able to do and it makes me very angry. I know deep down inside that this is happening but sometimes that anger is hard to control.
Then there are the horror stories that seem to go along with any disease and that is the fact that some people just cannot stand the stress that is involved with looking after someone with A.L.S. and they leave. Believe me I have heard that more times than enough and it is a very tough situation. Other problems such as friends who shun a person, and family members who do the same thing, are quite common unfortunately. There really is nothing much that you can do about these situations. I guess all you can do is give pamphlets explaining what A.L.S. is and how it affects people. There are some excellent booklets on this site that really do explain all about A.L.S. and are a good read for anyone not familiar with the disease (and even some who are familiar).
The most important thing is to work with people. If you are getting hard to understand, use a spelling board or use your computer voice program. What seems to be coming out perfectly normal to you may be very hard for others to understand. As a rule the Care giver can understand you most of the time much the same as a parent can understand their own youngsters while you are saying “HUH”
At any rate, and no matter how you go about it, you have to be understood in order for anyone to know what you want… and getting angry is not the solution.
Once again, and this cannot be expressed enough, REGISTER with you’re A.L.S. Society, they can help you in so many ways. Surfing the Internet will also help you with some good ideas but most of the things that will be of real benefit to you will come right from your Society.
There are some good free and reasonably priced “on screen keyboards” as well as other communication devices listed on this site under Links to other sites. You might want to try one or more of these. There are also some very expensive, top of the line, devices as well so it basically depends on your resources and just what it is that you require. Once again you’re A.L.S. Societies will be able, if not to help with the cost, to give you advice as to what you need and maybe even a way to get them at a minimal cost depending on where you live.
The next thing that I will touch on here is Support Groups. Some swear by them, others do not like them and this is a personal choice. Quite frankly I do not like them and have only gone to two, one here in Hamilton and another in Saskatchewan where I was asked to give a speech. The speech was very similar to what is written here. Now there are other types of support groups in my estimation. I write to a lot of people who do have A.L.S. and we kind of support one another so in that case I would have to say that this is a support group. I can honestly say that I “feel” for those that take their time to hold and run a support group and no one turns out. I think that everyone should at the very least give them a try because you just never know, it might be the cat’s meow for you.
Another thing that I have seen and have been approached on is cures. Again, there are none, and anyone who tries to sell you something that will cure you is a bold faced liar and should be behind bars. I had one “peddler” approach me to sell some kind of juice that cures everything from piles to cancer and all in between. At the mere price of about $100.00 you could buy this juice and drink it every day and be dancing the night away within a couple of weeks. I happened to stumble (I do a lot of that now a days) upon a report of this very same concoction and it was about 90% cranberry juice! Now wasn’t that a bargain! $25.00 a gallon for cranberry juice!
So that is pretty much how I have coped with A.L.S. up until this point in time. I know that I am weakening some, my voice is not as strong (and a few other things) but I have made concessions for these things. There are all kinds of gizmos and help aids out there to make life just a little easier and there is no sense in going into them here. I do have a page on my site dedicated just specifically to those items and I am sure that you will find some of the simplest things will make life a whole lot easier for you.
What ever you do, however, try to look on the positive side of things. If you have lived for two years think of the ones that did not make 6 months. I have been told by so many people who have worked with PALS and their families that these people are just one big extended family and was really impressed by that. We are, after all, in this together and if I can help in any way to make things easier for you then I feel it is my duty to do just that… and you will find that most of the others feel the same way. As with any group in any society there are always a few rotten apples in the barrel but they can be avoided with any luck at all. If you treat others the way that you would like to be treated I don’t think you can go too far astray.
George
"You've got to get to the stage in life where going for it is more important than winning or losing." Arthur Ashe
MGM
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