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Theresa2004

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Generally a purely fictional reader of sagas, romance, mysteries, intrigue, etc, always a book in progress, pages folded over on the couch to save where I had left off, I was loaned the first autobiography I have ever read, Michael J Fox, "Lucky Man". I found the book rivetting, having watched him as an actor in Family Ties, and of course, Back to the Future films. His story details his life in Canada, rise to stardom, and most poignant, his diagnosis and eventual acceptance of Young Onset Parkinsons. There are so many sections of the book I would love to post, which can be transferred to any debilitating disease, but there are far too many. I will post a few, directly quoted from his book. If anything, it may get everyone thinking how to fracture and infultrate the brick wall of awareness and funding we all face. Note, some of this information is from his stats in the late 1990's. His research on funding.

"Any number of special interest groups, be they AIDS, cancer, or Parkinson's advocates , are all competing for the a bigger slice of the pie. What's really needed, of course is simply a much bigger pie. So why do some patient groups get more than others? And why are others life out in the cold when the money's being doled out? The answer lies, in part, with the fervour and commitmnet of the lobbying effort, and that starts in the patient community."

He uses the AIDS community as his example, where the population of young vibrant, creative and often afluent ones, in a large gay population, mobilized themselves to be heard.

Since Parkinson's generally hits the aged, Young onset accounts for about 10 percent of patients. So they are left, unheard. He writes about a lawyer named Greg, who was diagnosed as an early adult. When Michael J Fox finally told the world after seven years of his condition, Greg wrote this to him.."this is sort of embarrassing to say, but I have to tell you that my reaction was "thank god"". A famous person with a not so famous disease. They had a voice! Sad.

Lastly from the book , I recalled a story relayed to me about a tug of war between the USA and Canada over the ALS logo use created in the US and used in Canada, much to their dismay, and our infringement to the rights.

As he becomes an advocate for his disease, within his research to study the players he makes this remark.

"I soon began to understand that one of the reasons that Parkinson agenda had not been carried out with a sense of purpose and unity had a lot to do with the factional nature of many of these groups, which refused to work together."

As most of us know, he became and remains a very vocal advocate for this disease, presenting his arguements for research, treatment, and humanitarian treatment for those who have lost their jobs, and insurance as a result to Congress, and his push for stem cell funding.

So what can we do as a minority amongst the deluge of terminal diseases? Rally together, form teams, strong groups of patients, caregivers, of loved ones and family and have our stories heard. Rally at our local provincial government buildings like many protesters do, walk with signs to protest the lack of research, the lack of awareness, then move along to Ottawa. Now, I am sure the media would come out for that, unless of course there is another designer dog show to be covered by our local TV stations, then of course we are SOL.

I found so many parallels to his advocacy and his battle to be heard. For a cure to ever be found, a treatment to slow the onset of this, there should be no divisions of boundaries; of countries. But if we have to, then the various cross country chapters for ALS should join together, create an ALS awareness day and rally in front of everyones "Queens Park" to be heard.

We want funding, we need awareness. And we need the coordination/cooperation of all North American Chapters to accomplish this.

No guys, I am not crazy, maybe a bit too much caffeine today, but a united voice is what will ultimately push for all MND patients.
 

Al

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You go Girl. Kick some butt. Moderator wouldn't let me say a-s
 

Theresa2004

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Al, you sound like Terry...
So, after the passing of Chris, who spoke up and was heard, hence his award in Ottawa, how do we continue the momentum?
 

Al

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I've been away up in Muskoka since Thur. so wasn't aware of Chris's passing until about half an hour ago. We'll have to do some thinking on the momentum thing.
 

me

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Great job Theresa. Mobilizing a group for advocacy is so tough and those that do are people of great strength and dedication. How can we do this?
 

Theresa2004

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maybe we should attach it to Trishia's idea getting it out to the public, in this case via religious organizations.
then we can see if our Member of Parliament who drafted a private members bill in Canada to have June designated as ALS awareness month. Now that would help. I suppose they are still on holidays, before resuming parliament. We could give Al the job to track that for us...Al, you up for it?
 

rcharlton

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II know this is going to stir up trouble - but I was just about to register for the Hike for ALS and set up a donation site - but I felt really funny about doing it - almost selfish...

I would probably feel different if a loved one was afflicted with ALS instead of me...

From a subjective point of view...I want all available funding to go to ALS research in order to find a cure...

However, from an objective point of view – although advocating a cure and awareness for ALS is no doubt a noble cause - I feel that there are other causes out there that may be in greater need of my help and advocacy...how do other PALS reconcile this?

It seems to me that ALS - like cancer - is more of a Western disease. With so many developing countries having a life expectancy of 50 years or less - ALS probably does not have a chance to progress in persons living in these areas as they are dying off at such an early age from Malaria, AIDS, famine and/or war...

Malaria is one of the deadliest diseases in the world affecting a staggering number of people, but gets little notice as it mainly afflicts individuals in developing countries with little income to spare for funding research or buying drugs...

I have rescued and taken in a couple of abandoned dogs...and make monthly donations to the Humane Society, WWF, Greenpeace and Sea Sheppard...to help animals who have no voice...but feel odd about making such donations to the ALS Society...

Does anyone else feel this way?
 

Al

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Actually Richard ALS knows no borders. The people of the island of Guam have a higher incidence of ALS than anywhere else in the world. We have had people on this very forum from India, Peru, Argentina, Africa, Australia and if you go to the top of the page to the member list and look through the list of members yoou will find a lot of people from other countries that have many more diseases than ALS. These are just the ones with computers. Can you imagine the numbers in these poorer countries with no computer or that can't even read or write. If a cure is found it will benefit the world not just us rich but still dying Canadians. Now when a cure is found it will not guarantee that all people will have access to the treatment or drugs or whatever route a cure takes.
The bottom line is that research won't be done in the poorer countries. But if you and I and everyone else with ALS in the developed countries were suddenly cured don't you think that we would do all we could to help the other afflicted wherever they may be.

We can't be our brothers keeper for everyone. While it is noble, it doesn't work. You have to look at the facts and make the decision that is in your heart and then live with it.
 

trisha p

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I know that ALS seems to be a Western disease but it is really indiscriminate as to in what countries it exists and how young it's victims can be. My brother was only 37 when he first noticed symptoms but that probably means he had less noticeable signs of ALS before 37. Prevelance is increasing in people younger than the median age for ALS...some are in their early 20s. ALS has affected other areas of the world - China...remember that Chairman Mau died of ALS. I cannot list all of the countries, but it does afflict people living in India, South America, Africa, Eastern Europe and Asia as well as people in the Western Hemisphere.

I guess what we have to remind ourselves is that by asking for donations to help research for a cure, and to aid in support services for those afflicted, we are not saying that ALS is more important than the other diseases and causes to which one might donate. There are so many worthy causes to which to give one's money that we couldn't possibly support them all, all the time. But I do believe that it is AS important.

However, what we can say is that ALS does not have the numbers that the other organizations have in order to bring in more dollars and draw more researchers into studying this particular disease. Because ALS does affect a smaller percentage of the population than other diseases, we have to work harder to get the message out there. Fighting to save someone from ALS is just as important as fighting to save someone from Cancer, Aids or heart disease. I am the least likely of all my acquaintances to throw myself into a fundraising campaign for anything as I hate the process of asking for $$$ but if it means that I can help improve the life of even just one person, I'll do it. When it means fighting for myself or for my brother, and for the many amazing people whom I've met with ALS in Ottawa and elsewhere, and through this forum, I'll do it proudly. It's still hard but I just remember why and then I don't feel so uncomfortable.

I can see that you are a very compassionate person and it really says alot about the person you are that you worry just as much about the people and the world around you and not just your immediate needs. In a world where many people only think of themselves and what can benefit them, you are a true blessing to the world around you. I don't think you are selfish at all. You seem very generous and asking others for help raising money for something that is personal doesn't diminish that in the least. Keep strong....


Trish
 

Theresa2004

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It is a known fact that ALS is not in the top ten diseases, not even the top 20, and surely there are more diseases out there in the world which afflict a great number of the population of devestating proportions. No doubt you have a valid point Richard. But I have to agree with Al on this one, and his comments were very well said.
Since I first really heard about the disease, although I knew someone a long time ago with it, and became involved, I was amazed at the number of people in our city who had it. I have met about seven of them, several others I have heard about. Doesn't seem like a ton of people but in a country where 3000 are afflicted, and 10 live in our city, I find the odds rather interesting.
How many times do we read about fund raisers for rare diseases in our newspapers? Pleas for help?
Many people who are passionate about raising awareness for a particular disease, have been presented with that disorder either with diagnosis, or family and friends. Heart disease, cancer, all the top ten, have millions and millions of dollars pumped into research, huge Corporations looking like the good guys by donating to certain causes. That is great, but if we don't promote awareness for ALS, how the heck is anyone going to know about? Read what I wrote in the Michael J Fox

"Any number of special interest groups, be they AIDS, cancer, or Parkinson's advocates , are all competing for the a bigger slice of the pie. What's really needed, of course is simply a much bigger pie. So why do some patient groups get more than others? And why are others life out in the cold when the money's being doled out? The answer lies, in part, with the fervour and commitmnet of the lobbying effort, and that starts in the patient community."

What he discovered was the lack of research and funding for Young Parkinsons disease, and he was appauled.

If we don't fight, who the hell is going to do it for us? The government?

We have to advocate awareness and push for the minority. The majority seems to roll down the hill without even peddling. We have to sweat it out climbing that mountain, often alone.

And who cares if this is just a western disease, which it isn't.Do the people living with it, their loved ones, CALS give a hoot if there are 20 people in the world going to die from this, or 20,000 people! This is personal to everyone who is and has been touched with ALS, and it seems as if the numbers are growing. Let the western governments give us a greater piece of the pie, the Corporations drop more pennies in our hats as we stand outside in the cold cuz they sure as heck won't if they don't hear the screams! Research for ALS is not strickly for ALS, it can derive results for other MND's.
 

Carol Deboer

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The bottom line is, if we, the families and pals do not fight for a cure or raise awareness for funding, all of our fights have been in vain. Our voices will be the most powerful of all because we have lived it and living it. We know first hand the adversities of this ailment and the lack of funding and awareness. It still amazes me how many people do not know what ALS is. It is almost a shame that in this day and age with so many afflicted and dying, that we have to explain to some people just what this dreadful thing is. I think it will be long hard fight to bring ALS to the Cancer and Heart Corporation level. It may never happen. However, I still think that doing all we can via donations and public awareness is a good start hopefully to a victory over ALS. We have to be our own masters of communication to the public forums and sectors. We can win this thing, with some patience and prayer and lots of hope. We all have to stand together and let our voices be heard. Hopefully, one day we can all celebrate a win together. Keep on, keepin on, do not stop. Do not let the power of outside infulences win.

Carol
 

rcharlton

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The point I was trying to make was one that was personal to me.

I certainly did not mean to imply that the fight for PALS is not a cause any less worthy than the other causes out there…it is obviously a cause that should and needs to be championed…and there is no question that the squeaky wheel gets the grease…

The issue I had was that when I thought about asking others to donate to the cause – I felt a little awkward – as if I had a conflict of interest.

I think that if I was a CALS instead of a PALS – I would have no issue – and would go to any lengths to drum up support.

When I thought about getting donations for the ALS cause – I did not get that same warm fuzzy feeling that I get when I donate or help out other charities relating to causes that do not affect me directly.

There may be some deep seated sub-conscious reasons for this. I’ve been pushing the positive mental attitude – and I certainly do not believe that ALS will be the end of me. I’m only 38 – and I am looking forward to a long life – I keep telling myself that I am not really all that sick – so maybe that’s why I feel funny about asking people to donate to the cause…

I suppose I just need a change of mind set – take me out of the equation – and think that anything I do for the fight against ALS is not to help me out – but the next person down the line and other PALS…which is what I expect inspired Michael J. Fox, Chris Mann and others like them with all their incredible efforts…

I have been doing my best to raise awareness – friends, friends of friends, friends of friends of friends – I think the word is spreading to a lot of people since my diagnosed in June…plus my partner just started 1st year med school at UofT – so I may slowly become a pet project for the whole class. I keep trying to tell her that she should bring me in for “show and tell” when she starts her neurology unit – I think that it would be a great exercise for her class to try and diagnose me (especially when there is no positive diagnosis for ALS)
 

Granny

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Ahh, rcharlton,
Now I understand completely what you mean about canvassing for ALS. I am a person with ALS. I helped with the local Walk for ALS, and raised funds mainly from family and close friends. I felt that if I asked the community for money it looked as if it was for myself. It was hard to do. I had a friend die of ALS a few years ago, and would have no problem asking for donations then.
I don't think we should feel this way, but it is always easier to ask for something for someone else than for yourself (even if it is not for you personally). Maybe we both need a pep talk from people like Carol and Al and Chris Mann!
I must admit I was a little bit concerned with your first post about this, but now know the feeling you are describing - been there done that.
I admire your positive outlook, and pray that you can be a case study for your partner's classes for many, many years!
Leah (Granny)
 

rcharlton

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Thanks Granny - those are exactly the feelings I was trying to express.

The good thing about forums like this is that it lets you know that you are not alone with your feelings and that there are a bunch of other people out there who've also experienced those same feelings at one time or the other...
 

Carol Deboer

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Hi Granny and Richard,

I completely understand what you are saying. I am a giver to others, and to ask for something for myself well, seems rather awkward. It should'nt but, that is just the way a lot of us are. It was extremely difficult for me to ask for donations for a ramp for Henry and other needs that were of the necessity however, I found that most people are more than willing to give freely of their time and reaources, if you ask. The Home Depot here in Sarnia donated all the wood for Henry's ramp. They were more than helpful even wanting to send a crew over to build it. The Home Depot is an ALS supporter. Remember that. I guess that we have to put our humble attitude away and recieve the support that others are willing to offer. It is hard, but in the long run you will appreciate the help. As for lobbying for funds, whether it be directly or indirectly, I guess you will have to find the comfort zone that fits you best. It is a whole hodgepodge of feelings that us families feel when faced with als. But, do not hesitate to ask, you will be surprised at the support out there. We are just ordinary people, living extraordinary lives. My girlfriend who works for the VON in administration just finished a palliative care course. This she did in part of being very close to Henry and seen the need for this level of care. A lot of nurses and doctors do not see many als patients in the course of their practice, and she did this to help other families dealing with high levels of adversity. Bravo to her. And as far as you being the "show and tell" feature at your partners school,great. You, I am sure will bring to the table much needed information and awareness that the books will not teach. Good for you. Make sure you comb your hair, brush you teeth and dress sanppy. ha...

Granny, how are you doing? Hope that you are coping okay, or the best that you can. Always good to hear from you. Sending you both hugs and prayers. Remember, all things are possible in his hands. Have a good night. Talk soon.


Love, Carol
 
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