How can I help?

Status
Not open for further replies.

jamorel

Distinguished member
Joined
Jan 9, 2010
Messages
193
Country
CA
State
Alberta
City
Calgary
I am going to ask all of you, how can I help? Tell me what I should do, even if it is something you don't think I could do... just tell me. I am going to share the wish list with everyone I know and see if out there somewhere, someone can make it come true.

You can add it here or directly on my blog @ Hope for Joy

There is power in people and in working together... maybe even a miracle or two.

Jodi
 
Hi Jodi ~ Just remember I am here to assist you in any way I can..............CATE
 
Jodi, three things come to mind.
  1. Teach. If we can teach one person a day about ALS and get them to pass it on we wouldn't have an issue with awareness.
  2. Volunteer. Get with an organization such as ALS Guardian Angels and offer your assistance. Offer to help families by doing housework or running errands or simply sitting with a PALS so the caregiver can have some time to breath.
  3. Contact ALSA they could have further ideas.
 
Thank you Cate, I may need to take you up on that. Please message me and we can talk more. I am trying to learn what is needed and where I can be the most help myself. My background is media and communications but I am new to ALS. The more ammunition I have to take out "there", hopefully the more we can accomplish here. I can't make any promises other than that I will do my best, but who knows, maybe thats enough. Don't know. gonna try.
 
Thank you Jeff... I am working on number one and number three but not number two yet. In Canada we don't have an organization like Guardian Angels but I wish we did. The ALS Society does a lot of the ground work and thats why I work with them. It is a good point, the volunteer part. Maybe we need a Guardian Angels here and a network of volunteers as we have PALS in small towns and in the cities all across the province and country... very wide spread and some areas are quite remote. Very good idea..
 
Guardian Angels is just one man, who funds it mostly by himself.
 
This week is MS awareness week. How can we get an ALS awareness week out there?
 
Jodi, can you come to the ALS walk in Edmonton on June 12? I would love to meet you if you could make it.
 
for me, this world side internet connectrion of information about the lives of als sufferrers is the top importance. There HAS to be a link somewhere that would break the code. EVery little thin, bblood types, zaccidents, exposure to too much babnormal stress......I will help. I am sure everyon will if it could be got off the ground. Just need a biologist/staistician. What about approaching universities for someone searchinf or an idea for his doctorate?
 
Hi Jodi, I believe May is ALS awareness month.
 
Jodi, can you come to the ALS walk in Edmonton on June 12? I would love to meet you if you could make it.

Barry, I would LOVE too! Can I bring my 1.5 year old? But I would, let's keep in touch on that and when we get closer you can give me the details. Does that work?
 
I found this for Canada re: the ALS month which is apparently June (link here) ALS Flower/Awareness Days

"Now, each year, the ALS Society of Canada sends to “Health Canada” (as it is now known) a prepared statement to be read in the House of Commons to promote June ALS Awareness Month across the country. This year's statement reads:

Mr Speaker
I am pleased to inform the House and all Canadians that June is ALS month.
ALS, also known as Lou Gehrig's Disease, is a rapidly progressive and fatal neuromuscular disease. While most people die within five years of a diagnosis, many live longer. There are approximately 2000 Canadians living with the disease and two or three Canadians a day die of ALS."
 
https://www.alsforums.com/forum/people-als-pals/11176-letter-sent-cambridge-university.html

I sent this to the medical statistics dept. It may not be the best place and I certainly wrote the letter int too much of a hurry. Btu could you send something like it to yhour great medical schools? These als forums alone have over 11 THOUSAND contributors. AA database that size would HAVED to throw up something xwith the right questions. We need young doc just qualifying about to take their specialist doctorate, maybe not sure what to do. IT is surely worth a try.......
Love
Iris
 
https://www.alsforums.com/forum/people-als-pals/11176-letter-sent-cambridge-university.html

I sent this to the medical statistics dept. It may not be the best place and I certainly wrote the letter int too much of a hurry. Btu could you send something like it to yhour great medical schools? These als forums alone have over 11 THOUSAND contributors. AA database that size would HAVED to throw up something xwith the right questions. We need young doc just qualifying about to take their specialist doctorate, maybe not sure what to do. IT is surely worth a try.......
Love
Iris

As it so happens, I am currently a student at the University of Calgary. I will try to find someone who has an "in" as I think it may require a coffee and a discussion with someone who is a deane or faculty member. Let me look into it. Jodi
 
I tried to post to your blog and got a bunch of pop ups. I don't like to post here because some snarky people here have informed me that "Life is what you make it" and that I should "Get a grip." (That last one was a special one... got that PM after having fallen into a snow bank, couldn't get up for about 20 minutes. Thanks. Great to warm up to that.) People act like it is my fault I have to go it alone.

DEAR PEOPLE: PLEASE DO NOT SEND ME YOUR SUGGESTIONS FOR WHAT I SHOULD DO! I know what I need to do. The problem is that I am not physically capable. So please, no lists, no suggestions for what to do.

I KNOW I SHOULD EAT MORE. I am losing weight but preparing food and eating is too laborious.

I KNOW I NEED ASSISTED STRETCHING. Come on over and assist me!

I KNOW I NEED TO WIPE MY BUTT AND SHOWER MORE OFTEN! Come on over and assist me!

Oh yeah, and I know having a loving relationship and a bunch of devoted children would help. Unfortunately, after being raised by criminally abusive parents, I became a caretaker of others... who abused me until I found solace in being alone. Then ALS struck.

Then I found that others who are more fortunate would treat me unmercifully.

I have seen the worst in people.

I wish I had ONE person I could count on even if it was for 1 hour a week. But you live thousands of miles away.

Now, here comes the criticism... <sigh> Watch the sharks circle. There is blood in the water.
 
Last edited by a moderator:
Status
Not open for further replies.
Back
Top