This is a follow-up on Special Guest Author Michael Ellenbogen’s discussion on Alzheimer’s Disease posted 4th October 2014
The following was copied from Capitolwords regarding a statement in United States House of Representatives, on 19th September 2014, by Rep. Michael G. Fitzpatrick recognizing Mr. Michael Ellenbogen and World Alzheimer’s Day.
Mr. Speaker, in recognition of World Alzheimer’s Day, my constituent, Michael Ellenbogen, wrote a touching excerpt detailing his experience with early onset Alzheimer’s disease.
Alzheimer’s disease is a progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, resulting in loss of memory thinking and language skills, and behavioral changes.
Alzheimer’s disease is the most expensive disease in America, and is the only one of the top ten causes of death in America that can’t be prevented, cured, or even slowed.
It is important to work with brave people like Michael to raise awareness and take action on this issue as a legislative body.
Please see Michael’s touching words below:
It’s been over a year since my last writing and since that time I have declined even more. As you see, this disease is slowly robbing me of all of my skill sets and it is becoming so much harder to be a positive person in our society. I cannot even enjoy the hobbies I once loved.
This is by far the worst way one can die.
I cannot imagine the toll it’s taking on my wife because it’s like a never ending grieving process and one cannot even see the end in sight, just the horror that’s coming. Dementia, including Alzheimer’s is the most expensive disease we face. It is costing us more than heart disease and cancer.
I believe it to be the third cause of death in the United States. Breast cancer, heart disease and HIV have all made tremendous progress since the federal government made significant investments into research.
Comparable investments must be made for Dementia so we can accomplish the same successes, while saving millions of lives and trillions of dollars.
Senator Pat Toomey recently stated at a Finance Committee Hearing that circumstances have changed historically, and as such we should be changing the way we fund this disease. I have been saying this for years.
Please make my life count and make it worthwhile for me in having this disease.
I believe we could be at the tipping point.
Make the hard choices; increase funding for Alzheimer’s disease and reallocate existing funding sources.
Do everything necessary to ensure that Alzheimer’s disease gets the exposure, commitment and funding necessary to change the course of the disease.
Regards, Michael Ellenbogen.
Michael Ellenbogen–Advocate for all of those living with dementia, who can no longer speak, write, or have passed.
Making Life Better for Someone Living With Dementia
To conclude this follow-up post, I’d like to draw everyone’s attention to some replies Michael made to comments left about his 4th October post – TSRA:
Prayers alone, will not help.
Please ask take some action and write a letter to your congressman and senators.
This disease is so underfunded and we have no survivors like other disease to speak up for us.
We need regular people to do this because like many other like me we are losing our voice, and writhing ability to even fight.
Please do all you can to encourage others to do the same.
Only this way one day Alzheimer will be a thing of the past.
It starts with you.
I was very active. Walked up 9 flights of steps and not take the elevator at my job. Please do not make the connection of old age and Alzheimer’s. So many think that way and that is part of the problem.
This disease effects many young people.
I know someone who was 29 and got it with 3 kids and wife. The impact is even greater to those than someone who is older.
While I cannot speak to why it is happening I do believe more are coming out to talk about it and we are getting just little bit better knowing about it.
We have long way to go.
The biggest problem we face is the stigma associated with it and no one wants to talk about it or even tell others they have it.
Believe me you are treated very different and negatively.
People lose their friends jobs and civil rights.
We need to change all that because I did nothing wrong to get it.
Alzheimer’s today is like what they referred to as the C word (Cancer) 30 years ago. There are many smart people here that can change all that.
Many here have the power of the pen and can influence so many editorials, blogs and so many others.
Some are even famous.
Use that power in a way to bring hopes to others like me so they will not need to deal with the devastating news.
They should be able to have hope just like the people who have cancer or HIV.
While I wish it would it will not happen because not many even know about it.
I do no marketing or even been on any radio stations like I did for my first book.
I cannot afford to waste the time to market for the book because it than takes away from my advocacy which is so much more important.
Based on the reviews I saw it was better then I thought.
When I see those reviews it gives me the inspiration that I know there may just be hope one day to get noticed.
Hopefully it happens when I am still here.
The only negative thing I heard was from a recent doctor who believed that the system had changed and it is no longer like I had described it.
The sad part it is it has not changed as so many I have come to know.
Even the doctors say the system has failed us.
This doctor was probably one of the good ones and the exception.
I run into them every once in a while and to them I apologise.
Most of them think the system is okay based on what they know and do.
As you can see that anyone who has any connection to dementia will benefit in some small way if they read.
It is my hope that they take the necessary action to resolve those issues addressed in the book.
If that should happen I have really made the contribution I indented to.
If anyone should be interested I have a 30 page document that I have shared with NAPA and many other world leaders about my dementia vision.
If you would like a free copy, please reach out to my website on the contact page and mention that I made the offer and I will get it to you.
If you know someone who is dealing with dementia they would really appreciate it as a gift.
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this article to help spread awareness, not only of this disease,
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DO MORE NOW