This is a letter from Joyce in Nova Scotia and gives an example of how doing the above will be of benefit to you and your loved ones.  Thank you Joyce for the permission to share this with others:

STEM CELL RESEARCH… FOR IT OR AGAINST IT

As I sit here at the computer adding things to my website a thought occurs to me.  There seems to be a multitude of Politicians, Evangelists, Scientists and the general public who are wading in on the Stem Cell Controversy.  The only people that seem to be silent are the ones that are most affected by the whole thing and that is the people with ALS, Parkinson’s, Alzheimer’s and other neurological diseases.  It makes me wonder just how we should make a decision; on one hand we are told by groups that it is unethical and on the other hand we are being told that this is the cure or at least a way to slow progression.  I think that we should have some say in all of these endless arguments and in a general poll (for lack of a better word) those of us that this could help or not help should be heard.  It is pretty hard for those with ALS to swing a government vote. We just do not have the numbers to do so although we are the ones who may be most affected by the outcome of it all.  While they are worrying about Dolly we are all Dollys and are, quite frankly, dieing while the debate rages on.

I try to be very open minded on the whole thing when it comes to doing the web site, I try to be objective and put items up from both sides as the site is neutral.  What I think does not matter, nor should it matter, when it comes to things like this on the site.  I have put up items that I strongly do not agree with but, nonetheless, they have to go up; conversely I have put things up that I do agree with knowing that others will be strongly opposed to.  This is the only way that I can keep the site neutral in all of this and this does not only apply to the Stem Cell debate.

A FEW OTHER RANTS

Much as I disagree with ALSA’s decision to charge others to use their Walk Logo I still publish all the things that they send because they are good items and should be available to all.  I do have to admit that the decision to copyright their Walk Logo was pretty smart and more power to them if others pay the fee.  I think that overall though, the people that do get hurt are the most vulnerable, the people with ALS.  Sometimes I wonder if those in charge kind of lose the perspective of it all, they should be there to help PALS first and foremost. 

I am lucky I can still fight my own battles and express my own opinions, BUT, what about those who can’t, do they just sit and wonder when help is going to show up?  ALS Societies on the whole are doing an excellent job and I also know how easy it is to criticize but there are some things that seem to me should be offered immediately.  A simple item like the lack of a cane can keep a PALS bed bound for a week or more until one is found, this should never, ever happen.  I have met too many people who never even knew that a society was there for them… what is wrong with this picture?  Clinics, especially in the US, are very reluctant to refer PALS to such simple things as support groups.  This is much better here in Canada but we are still missing people and they are “falling through the cracks” which is just not acceptable in my opinion.

I have a great deal of respect for all the people that work at the Society levels and think that many of them do so because they have seen ALS do its “thing”.  Unfortunately there are others that should really spend a few days in a PALS home to see just what is needed…whether newly diagnosed or not.  I think that would leave a lasting memory of just what is ALS is all about.  They should then go back and spend a few more days a year later (if the PALS is still around) and see how fast things move.

WALKS

As the Webmaster of this site I seem to be privy to a lot of information that likely others are not.  The latest one is the fact that they're pushing for more donations electronically online.  This makes me wonder why we bother calling them “Walks”. Why not call them “send in your Money and stay-at-home” things.  I feel the whole idea of having a Walk is to gather as many people as possible to show our support and solidarity towards the goal of curing ALS.  This will never happen if people simply send in their money on-line.

Publicity is one thing that is very hard to come by. The press, television and  other media are reluctant to come out and watch five people walk around a track. But by having 500 people out we're making a statement that cannot be ignored.  Another thing that bothers me about online pledges, and pledges in general that are sent in, is the fact that so many of them are never honoured.  By watching telethon's you will see so many people call in and pledge a lot of money just to see their name come across the screen when in actual fact they have no intention of donating a red cent.

Personally, I would rather see 500 people walking in a walk than 500 people promising to donate and not showing up.  I realize that the whole concept of having walks to promote or raise awareness for a particular disease is to raise money.  However, we have to also look at the awareness and awareness only comes by having numbers of people willing to donate not only money but also time to take part and show solidarity.  Another thing that definitely has to be considered is the fact that a lot of people especially, those with ALS, are as a rule on the elderly side of life and therefore many of them do not have a computer or access to a computer.  This puts a lot of them at a disadvantage if you are looking for online donations.  Another thing is the fact that a great many people do not like to use their credit cards online no matter how secure it has promised to be.  I guess we will have to wait and see and only time will tell if it is better to collect some money and have fewer people walking or collect the same amount or more with a lot of people walking.

The downside (and there always is a downside) is the fact that the way the walks were run previously you require a lot of legwork and a lot of volunteers.  Unfortunately PALS are not the best candidates for this kind of thing which makes it very hard to find the necessary volunteers to do the legwork.  Of course the other thing is that once a volunteer is found and they do their course of duty, which I consider about two years, there just doesn't seem to be a bunch of people jumping up ready to take their job.  I know a few people who have given their all and have had a hard time finding replacements.  One that comes to mind is Bruce Wilson here in Hamilton, who is a PALS, and how Bruce managed to do what he did over the past years is completely beyond me.  A lot of people, I think, feel that they just come out to the Walks, and because everything is laid out and done, there's not much work involved.  They seem to forget that corporate donations have to be solicited months in advance, bookings have to be made, food arrangements have to be made, and all these things have to be done some as early as the previous year.

All that being said I still think that the people Walking will always show more results than online donations no matter how much money they take in.  I firmly believe that awareness, fundraising and research go hand-in-hand; one cannot do without the other.  So let there be Walks no matter what they are called and let there be great numbers at them so that the general public will know that we are doing our very best to raise awareness about this disease called ALS.

Community Access Clinics

Finally I would like to touch on the subject of Community Access Clinics.  (These are not to be confused with Community CARE Access Clinics). I am very lucky in the fact that I live in Hamilton and we have a Community Access Clinic here and so it is readily available to people with ALS in this area.  It is important to note that these clinics stress how very important it is to get in and get your valuations done while your voice is still reasonably strong.  Once your voice starts to go there's very little they can do to help you.  As with any other needed equipment it is imperative that you apply early and well before it is needed.

I completed the forms in order to access our clinic here last spring.  It took almost three months in order to get into the clinic and I am assured that people with ALS are bumped to the front of the line.  The waiting list for others is up to a year or more, this does not mean that you should wait because ALS can, and will all of a sudden, put you in a position where it will be too late to use the service.  At any rate on my first visit to the clinic my voice was evaluated and I did bank some phrases to be used at a later date on a computer rather than the computer voice that is quite impersonal.  Also at this time I was given a voice amplifier that is worn around the waist with a small microphone that is used to amplify your voice if it is getting weaker.  Although the amplifier itself is around your waist, and perhaps it may sound like you are speaking from your belly button, it does nonetheless do an excellent job of letting you be heard.  On subsequent visits to the clinic I was introduced to the Dragon Speech Ware program.  This program allows you to open programs on your computer and dictate everything from e-mails to Word documents such as this one that I am now using it for.

I believe I made two trips to the clinic for voice training and then I had three home visits from personnel at the Access clinic to test how the program was working for me.  On my first visit I was given a typing test and I believe I scored somewhere in the 20 to 25 range of typing words per minute with my hands.  Using the Dragon Speech Ware program my typing has steadily improved until now I can use this program and am typing at the rate of 64.4 words per minute with my voice.

I have to let you know that not only do they provide the Dragon Speech Ware program but also you are provided with a leased computer as well.  As some of you may remember my computer was hit by lightning last summer.  All this came about while I was in this program and so as a consequence I wound up with the new computer on lease as well as the Dragon Speech Ware program.  I'm also very pleased to say that ALS Ontario has helped me very much by picking up the cost of the lease.  I think that the beauty of having a leased computer is the fact that if anything goes wrong they are there to fix it.  The other bonus of having a leased computer is the fact that if you do at some point in time have to go to a laptop you can turn this in and get a laptop.

The only problem I can say with this program is the fact that people in areas that are too remote from the few clinics in the province just cannot make the number of trips necessary to learn the program.  Although Dragon does put out a home version I am told that it is not the very best and quite hard to learn.  There is an intermediate version between the home and professional versions which is supposedly not too bad.  The one thing I am told that you really need is a very good microphone in order for these programs to be effective.  I am not sure if these programs are available in other provinces or how their Access Clinics work.  It would, however, be worth the call to your local ALS Society to find out the availability of such programs in your area.

I did express my concern to the clinic here in regards to people that just cannot get access to the clinic.  I have also raised these concerns with ALS Canada and ALS Ontario.  To the best of my knowledge in Ontario the only clinics available are in Toronto, Hamilton and Kitchener.  I am afraid that this pretty much leaves the great majority of the province out of reach of any of the clinics.  Hopefully this situation will be remedied in the near future and these clinics will be available to all ALS patients.

I would at this time like to thank ALS Ontario for helping me with this situation as without a computer the site would have likely closed.  And I would also especially like to thank the people at the clinic who did the testing and set up the computer and have come around to continue testing and making sure that the program is working as it should.  This is a perfect example of how things should work but we do not live in a perfect world and therefore so many people are left out of programs such as this.  Also, so many people are not aware of programs such as this and through no fault of their own are consequently left out.  I sincerely hope that these clinics will be expanded to take in areas such as Northern Ontario and in fact all sectors of the province.  I also hope that these programs are available in other provinces and that all ALS patients especially those whose hands prevent them from typing will be able to access and use programs such as this.

Anyway THAT IS HOW I SEE IT.

George

"You can make more friends in two months by becoming interested in other people than you can in two years by trying to get other people interested in you." Dale Carnegie

THE OVER FIVE CLUB

10 year

15 year

Thanks for this Lee it is appreciated!

“The best defense against the atom bomb is not to be there when it goes off.”
Anonymous

You Are A Part Of Me

You are a stillness amidst my storms. You have taught me to love deeply and with all of my heart. You are a bright light that shines through my darkness; a reflection of everything precious any heart could ever hold in one lifetime. And in all of the world and all that it holds.... You chose to love Me!

You became a part of me and all I would ever become. We share our journey in life ... through the laughter in our days filled with joy and through the pain in our glimpses of grief. A shoulder is a gift that God gives each one of us for someone else to lean on and many times I have leaned on Yours.....

I chose to love You!

You will always be a part of me. It is now that I realize the love we share will span far beyond a lifetime. It is now that I thank God for giving me the gift of having You in my life..... And it is now that I thank You for the love you have given me to hold onto and cherish!

Together with God, we stand STRONG! Together with God, we claim HOPE! Together with God, we will find a CURE!

Millie P. Lorenz

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