it is true. When I started researching this disease through my journey, I was appauled at the lack of support and funding this horrific disease has. Like you said, for as long as it has been around, it is a shame we have not progressed with any treatment thus far.
ALS is not in the top ten of diseases. I suppose that should be a positive way to look at it.
We had a local support and walk meeting this week, and our representative from ALS Ontario expained how the research is approved at various levels of the political and medical playing field.
In short, research is often piggy backed with other motor neuron diseases. MD, MS etc. Those receive the big ticket research grants due to the sheer number of people inflicted. Information is shared, so there are projects dedicated to ALS, some cross over between the other illnesses.
As with many diseases, cause is a factor, and with ALS, Parkinsons, MD, MS..it is a crap shoot.
As with any research, it is slow. How many drugs have been pulled of the market after years of testing, to find they produce other potential harmful effects?
Awareness is the key to push for adequate funding for all projects and if you look around, everyone is out there riding, walking, and bowling for a cause.
Dollars are tight, as our governments seem to spend our hard earned cash on more useless projects then we can count.
The unfortunate aspect of research, is you need someone famous to speak out to the masses and ignite the flames. Look at Michael J Fox as an advocate for Youth Parkinsons!
In the US, Ester, from the Young and the Restless, for those who watch, has a brother in law diagnosed. She has been an advocate and has been successful promoting awareness. Celine Dion's closest assistant and friend for 25 years passed away this year from ALS. Can you imagine the awareness if she was to promote and raise money for research?
Let our voices be heard, in every way possible.
For the past few months I have been thinking about this and I know I am only one person but I would like to bring more awareness and try to help somehow. I have written things in the past and have thought about writing about this. It is not only heartbreaking to be in this but when you reach out for help and support there is very little there. I know I am only one voice but if I speak then the words will be heard and maybe others will write too and we can make a difference. I am not a famous person but I am married to a wonderful man with als who is famous to me and I want to help my loved one and others.
You are a very good writer, and express yourself so well. If you can make people more aware of this awful disease and the financial burden it brings along with everything else, than you will have a done a very good deed.
I know there is somefinancial help for some of the equipment, special food, homecare and the list goes on and on....but much is not covered.
Thank you for trying to make life easier for each of us.
Hugs to you and your famous husband!
Thank you for your words of kindness and encouragement. I have written today to a magazine in hope that I can write our story and help others. I will try my best to bring more awareness and give us all hope for the future. I want to write partly about what it is like from the beginning when you recieve a diagnosis, the emptiness one is left with and the lonliness when there is no one there but you and your loved one. We walked out of the doctor's office and felt so alone not knowing what the future was going to be like. We can all make a difference in our own little way. This forum makes a difference every day.
I am in agreement with all of you. I cannot believe the lack of research going on right now in Canada and I am dissappointed that there isn't more concrete evidence at what causes this disease. It is so frustrating! How can we have hope?
I just finished reading "Tales from the bed" by Jenifer Estess and it sounds like her and her sisters had great success getting millions of dollars in funding and lots of awareness. People like Katie Couric involved.
I would like to try and make a difference, if I could. I just don't know how YET!
Let's keep our spirits up and do our best each day to bring more awareness and funding to find a cause and a cure.
I also just finished reading the book. It was wonderful what they did. The sisters worked very hard at making a difference. They said they were going to help and they did. Like you I am trying to figure out how I can make a difference and help my loved one and others. I am working on it. Tonight was a very rough and painful night. My husband has not been doing well and it is literally breaking my heart. I am trying so hard to keep his spirits up and keep hope in his heart. I have to say I am not impressed with the care we have recieved so far, now I do not mean all the care is not good, just some it is really pathetic. You reach out which they tell you to do and when you do there is nothing no answers nothing. I am sorry everyone I do not mean to sound negative here but we see a specialist every three months, this is the normal way of doing things they say, I say there needs to be more. More help and support for families. Did they forget that behind the illness is a human being with emotions. We are not just dealing with symtoms we are dealing with our loved ones feelings. Day by day I am watching the changes and I feel helpless. I have reached out to find nothing but closed doors. It is truly very sad.
Hi Sandy. As I've said before the quality of care can change drastically from area to area. I'm sorry but I can't recall where you are from but NW U.S. comes to mind. I just moved into a new area and am just outside the boundries of 2 different ALS Society boundaries for districts. Luckily I made some good friends in the old area because they will still look after me for now. We usually see the Neuro and Pulmonologist and OT and PT and even sometimes the Chaplain on our clinic days. That is one of the good things about a Neurological Clinic that deals in ALS. One stop shopping. If you have concerns or problems our clinic will get you in as needed. Research funding is a horse of a different color. We need more Curt Schilling's to raise awareness. Does anybody know someone who knows someone who might know the gardner or driver of someone famous? We can raise money at our walks but we need some big name talent to get us some media attention. As to the care issue I have had situations where someone will come to see me and I'm there first als patient. Not much you can do there but educate them. I know it shouldn't have to be done and is frustrating but when on any given day in Canada there are only 3000 of us we are spread quite thin. Maybe we should all move to Ottawa and start making noise. Any body got any other ideas?
Hi, We have been talking about this topic. AlS has been around since the 1800's all the money raised for ALS . We wonder what they are doing with it. Seems that since my son-in-law has been diagnosed in talking to people we find out they know someone who has it. Friends and family of Jack are having a benefit for him on July 8th, I have to say we are overwhelmed with the contributions. Over 500 tickets have been sold already and the local businesses are donating everything needed. WE HAVE CONTACTED THE LOCAL NEWSPAPER AND ARE CONTACTING LOCAL RADIO STATIONS. MAYBE THIS IS A STARt. We don't see anything on TV commercials. This disease consumes the whole family! We hope and pray for some help and are striving to do something. Any other ideas? Keep in touch. My Best to all, Beebe
My heart goes out to those of you who are facing "closed doors" when asking for help. My best friend w/ALS has been overwhelmingly lucky in receiving what she needs by way of a special ALS wheelchair, voice synthesizer, breathing apparatus to force air into her lungs at night when she sleeps, a just delivered Hoyer Lift to get her in and out of bed, and a myriad of other tools, all paid for by a combination of ALS foundation services, Hospice, and insurance companies.
I'd like to put my 2 cents in and agree that it is difficult at best to get help, but please don't be discouraged. Hound your insurance companies, and especially your local Hospice organizations for help. It is there! Sometimes it is hard to be aggressive when asking for what we need, but worth it in the long run. It's too bad it is like this.
But I'm watching my friends family fight for her life, and leaving no stone unturned. I am now BEGGING car companies to loan us a van for the short time she has left so she can at least get out once in awhile. Many places will donate what we need for our loved ones if they get good publicity and can write it off as a charitable contribution.
Best of luck to everyone. My prayers are with you.