Wednesday, 27 July 2016

Richard Is Living With ALS - The Movie

We had a guest for dinner last night, a young man called Chad Tweten and his girlfriend Nicole. Chad is the fellow who has been working on my video for Rock Out ALS, an ALS fund raising concert in Woodinville, WA. He has finished the video, and you can find a link here, or at the top of the column on the right of my blog. I encourage you to watch it.

The goal of this video, intended as it is for a fund raising effort, is three fold. First, I wanted people to know what it's like to go from a vibrant, active life to dealing with, and living with, ALS. Second, I wanted people to see, graphically, how hard it is to live with ALS, both physically and emotionally. Finally, third, I wanted People with ALS, especially newly diagnosed PALS, to know that there is life after diagnosis, and that having a terrible disease does not mean you should roll over and die. As I say in the video; your going to live until you die, make sure you live before you die.

Here is what I would like you to do. First, watch the video. Then...

  1. If you are anywhere near Woodinville, WA., head over to the Rock Out ALS Concert this coming Saturday. While you are there, make a donation to help PALS, and to aide in research into a cure for ALS.
  2. If you want to support ALS locally, make a donation to your local ALS Society. To donate to my local ALS Society, go to The ALS Society of Alberta and click on the donate button. Make sure you tell them you saw my video and that you are donating in support of me, or whomever you are supporting.
  3. If you want to support me personally, as I work and fight to live with ALS, you can click the Donate button at the top of my blog. Give what you can. I appreciate it. A hundred dollars will help with household expenses. Five hundred dollars will allow me to go visit my Mom in Vancouver. Two thousand dollars will help me take another road trip. If you are really wild, you can help me raise $5,000 USD  so I can take a cruise to the southern tip of South America, one of my bucket list items. 
More importantly than all of this, watch the video. Learn about ALS. Then share this post, or the video, with everyone you know. The more that people know about ALS, the sooner we will find a cure to this awful disease.


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  2. I don't know what to say, Richard. I am without groceries until food stamps kick in August 7. $190 a month. Disability is 1100. No family to help out. Yes, scary.

    1. I understand your fear completely. What can we do to help? Do you have e-banking? Can we send you some money?

  3. Thanks for reply. There is absolutely no support to speak of here in my city. It is a major city. The doctors are renowned. Yet, the nurse is such a bully she has been removed from associating with me.

    The physical therapist keeps showing me how to carry a smaller purse. Or, they show me the same exercises. I had to ask for a prescription for physical therapy for help with the legs and hands and breathing, but no one offers any info on home aids.

    The nurse neglected to tell the doctor I fell and hit my head on concrete. I can't use the bus because I can't get up the lower step, and the doctor said, why didn't you wait for the next bus? That's not logical.

    The ALS association in the city is a terrible monster. They won't give you any clues unless you sign a contract saying they can communicate with your doctors. I don't see why they can't give you information on how to get a home health care aid, how to deal with insurance, or allow you to talk to a social worker about what to do when you cannot afford bananas.

    I suggested to the director of the chapter, why don't you offer a cheat sheet for people who need to find out how to dispense soap or how to be careful plugging in things.

    Everybody is too embarrassed to talk about the people who have nothing. They expect families to pick up the slack or to call churches or other agencies. Catholic Charities and Salvation Army say they have no more funding or no funding for compression socks or any of the things that would help in the house.

    The churches all say they have no funding, either. When a pastor came to the phone he said, "Come to the church and I will wash your hands for you" and hung up.

    I wanted to give another perspective because I seem to be the only one who doesn't get to say, oh I'd like to do this or that because I can't even go out and buy a new sippy cup, because it would cost two dollars.