He seems to think he is the only one out there fighting for more funding and recognition of EOAD and AD. Hope he realizes he is not alone and will join forces with others that have the disease.
I awoke especially early this morning, back to work and lots to always worry about at home. So I watch Mr. Ellenbogen video. Unlike the Pat Summit case.....he's honest, he's trying and he has the disease and understands his situation. Hopefully his wife will join this group :) Yes we all do what we can in promoting awareness, raising funds for research but we are on the losing end of this battle. And I would also say that my ALZ organization here in Delaware has nothing in support groups for EOAD. That's why this place have been a life saver for me. Alarm going off time to start the rollarcoaster......
Terry54--don't know if it would be worth it for you to travel here, but the Greater Maryland chapter of the Alz Assn has lots of EOAD programming (support groups). Check out their website (alz.org/md) and call Carol Wynne, who is the early stage coordinator. Tell her I gave you the referral.
Thank you Marilyn ....extremely kind and will check into it and see if there's something on the Eastern shore part of Maryland. But with Hubby and full time work ....travel away is impossible at the moment. Having to extended hire care for work time isn't going to give me funds for respite time ....that's the major dilemma we all face. I have always said if I live to see the otherside of this I will advocate for Caregivers and the funds and tax breaks they deserve. Saw the new program for the military and said great for them .....what about us. Having one of those days since Hubby on edge about changing out and elongating new Day care person...... Also I have advocated here in Delaware for 6 years for an EOAD group. Their comment don't have enough familys interested ......now that I find interesting. Sorry I being itchy today
I watched the youtube video and hope many others will too. He mentioned a woman basketball player - well he must have meant Pat Summit the U of Tenn coach who recently announced she has Alz. I live in Tenn and she is greatly admired by most people and of course known nationwide as the coach with the most wins women or men. I only hope she will be an advocate for Alz research. .There are the Jimmy Valvano cancer research basketball games. They could do the same for Pat with Alz. research games. At present all I see is "she will beat this". Of course that is from those who don't have a clue or just don't want to admit she will not beat this any more than anyone else will. This is all new to her fans so perhaps someone will come up with this plan. ---------- There is not an active support group in the town where I live so I really depend on reading from this board. There will be an Alz. walk here that I will at least contribute to even if I cannot be at the walk.
I found out he use to be on Memory People but did not fit there. He focus's on the political aspect - getting the politicians behind the research to find a cure. I know there are others out there and I hope he connects up with them.
I watched the video and I got a few impressions, one was the same everyone else has that I hope he gets with others(professionals) that are doing something about making awareness grow, because they are out there. Also, I was watching him and how "pumped up" he was about what he was saying and I think what he is wanting to do will keep him and his mind occupied and give him a will to live while he is living. I did agree with a lot of what he said and it is nice to have some patients talking about their disease because they are the ones that are actually afflicted with it so who better to tell us exactly what it is like.
Terry54--I checked the list, and there are many groups that meet on the Eastern Shore. One is listed as Early Stage (as opposed to EOAD) and it's for people with dementia as well as their care partners. That group requires pre-screening, but may be worth it if it's appropriate, since you could take your husband with you.
Marilynin, thanks for checking :) I also check web sight per your suggestion. I wish everything was closer. From when I get out of work and the distance.....would never make it......all Deer crossing roads, so can't fly thru those back roads (Hubby use to call me Parnell Jones, I don't know who that is but driving fast must be something in the mix) The pre-screening is the prelims i.e. $$ of what you should do, Powers of attorney issues etc. Pass those issues 6 years ago :( Spoke yesterday with Geriatric NP from local hospital, explained my issue on support groups that are more age related..... you never know. Today I am interviewing a CNA for extended care during the day, wish me luck And it's not that Delaware doesn't care but EOAD is not a priority, only so much money for them to help alot of people. As GNP said "an epidemic that is just beginning"
I came across this as I was doing my searches. It makes me very happy to see people talking about this matter but I encourage reaching out to me so we can make a much larger impact. Feel free to reach out to me. authorellenbogen@verizon.net Look forward to working with you. I may need to call you because I do better on the phone.
P.S. And about the comment about memory people, can you believe the moderators threw me off the site for good because tried to get people organized top make a difference in advocating and stopping Alzheimer’s. I cannot believe that even happened. I would not trust any site were the moderators push their own views and do not allow other to comment and leave it to the group to make up their own mind.
By the way I do not focus on the political aspect. I am running blind and do whatever it takes to get the word out. I need help to do it the right way. I just wish people would just remember I am far from perfect and I do have Alzheimer’s which does not help me at all.