Announcing “Memory People” a New Facebook Group for Alzheimer’s Patients
Hi everyone. I would love to introduce you to a wonderful facebook group I came across thanks to Dr Richard Taylor who has Early Onset Alzheimer’s. The group is call “Memory People.” For directions on how to find the group see the bottom of the page.
Rick Phelps, who has Early Onset Alzheimer’s Disease. He started the group just three weeks ago and there are 57 people in the group already. I asked Rick if I could help share his cause and he said YES! Below is a letter from Rick explaining in more detail about himself, his mission, and Memory People.
I want to start out by thanking you for joining our site. I hope you had the time to read some of the posts. You will see these are common people with uncommon struggles. I am so thankful to have found each and everyone of them. I will now try to explain a little about myself and what we have done here…please keep in mind I wonder off subject at times and have a hard time keeping things in order if you will, so read between the lines at times…lol
I am a 57 year old male. Have been married for 24 years to my lovely wife, Phyllis June.
(Opps correction needed that would be 27 years I’m told… LOL Thank God for an understanding and loving wife) She is my rock. I say that not because of the situation I am in now, but because I married my friend. It does not surprise me one bit what she has done for me and what she will do in the future.
Anyways, I was in Law Enforcement for many years, and EMS for 24 years. (Opps correction needed that would be 27 years I’m told… LOL Thank God for an understanding and loving wife). Like all EOAD patients I suspect, I thought I had a problem some 6 years ago. Started out by forgetting codes, numbers I would use everyday. We went to our local Dr. who attribitued it to stess. My daughter had passed away in 97′, and he thought maybe that was the cause. So we went along with that, took what meds he perscribed and life went on.
Within the last year, I was having many, many memory problems. Talked with my wife about it, Doctor again,etc. but again, he attributed
it to stress. With EMS work or whatever. Well to make a long story short, I had many things happen to me, while working EMS that I knew was not right. It started with I could no longer remember the address we would be paged out to, after living in this city my entire life. Then it snowballed from there. I knew and told my employers up front what was happening. They treated me as friend, instead of an employee which was appreciated, but probably not helpful looking back. I kept telling my wife something was going to happen, something terrible on a run, and it did. On my last run in EMS, we were paged to a small child, having sezuiers, and everything went wrong. We started CPR on the child when we arrived who was already blue, we continued into the ER and they worked him for over an hour. Never getting a pulse or heart beat back.
He was pronounced dead and I just lost it. I had been around children dying many times before but this was differnt. and I knew it. Anyway that was my last day in EMS. I went back to the Dr., our local Dr who still was dragging his feet about my memory problem. He did however after many blood test, MRI’s etc, send me to a Neour. Doc who agian after many tests diagnised me with EOAD.
Now, here I am, 57 years old. Not able to work any longer. I, along with my wife have always worked two jobs. One EMS the other Law Enforcement and now I can do neither. I was after again many test, those mini mental tests, etc. declared disabled. Heres the kicker with that. They say your disabled, and put on a fast track beacuse its a memory thing. There idea of fast track is not mine. It has been since June, with no income, and wont get my first check until Jan of 11′.
Then the best, I am not eligalbe for insurance until 24 months after that. This is unaccapteable. I have always been one to voice my opinion, and was and am determined to do so in this matter. Not because its me, but because there are millions like me out there.
Needing help. You know the story, if I had several kids, didnt have a job, or they would give me assistance immediatley locally, but since my wife is employed and with the income she makes, we do not qualify.
This is not only wrong, its unethical.
Thus after many weeks, and months of wondering what I was going to do, how could I help, I thought of starting our site, “Memory People”. I did this after going to many other sites on Alzheimers but none of them acutally offered the personal interaction with people. I then went to Facebook, knowing very well there are many on there, but also many who do not or cannot do computers. But I had to start somewhere.
Thus the beginning of Memory People. After only three weeks we have grown to over 50 people, patients, and caregivers. I could not be happier. I must also tell you I am a firm, firm believer this is a caregivers disease, and that is not talked about enough.
I am still smart enough to realize that if it is not for my wife and daughter who are my caregivers, what would I do. And there are millions in my position. Alzheimers is a terrible disease. No one denies that. Its the lack of Govt. Funding and awareness that i want to fight. I do not know how to do this, I only know my story, and I want so deserately to share it while I still can.
I am not above asking you, if you can help me…tell me how I can testify, or whatever to Congress or whoever to get my, our story out. I want to do this, because when people see me, talk to me, they can see the problems I have with converstions, I stammer and stumble through simple things. I cannot do this without my wife present, she knows my very thoughts. I look at her when I get stuck and she knows what I am thinking or wanting to say and gets me back on track.
I know there is no cure for me in my lifetime. We were told this is terminal, to I answered, we are all terminal. I just know bacically how long I have here on this earth. And I am determinded to help others. I am no Marie Shriver, do not have the charisma or star power she has, but I can tell my story and will to anyone who will listen.
Everyone on the Memory People site tell me thank you for what you have done here. When in reality it is me who thanks them, for what they bring to the site.
Please help me in anyway you can. I know my time is short, and my thought process deminishes everyday. But I will fight for the caregiver of this terrible disease, the funding or lack of for it, and for the patient it effects….
Thank you for taking the time to read this, I hope it made some sense. Like I said, I tend to ramble. But I know in my heat what I want to say and do for people with this disease….
To find MEMORY PEOPLE ON FACEBOOK:
1) Log into facebook
2) If you have not signed up for facebook yet, you must do this first. Once you have done this you will have a home page and can follow the directions below. To signup for facebook, just google facebook.com and follow the directions. It is very simple to do. I did it! LOL
3) Once you are logged in on your home page you will see a search box just left of the facebook logo and next to the little, people, comment, and world icons. You can’t miss it.
4) Type in “Memory People” and a list of groups will appear
5) Click on the one that says “Memory People” and it will bring you to their page.
6) From there you can decide to join by clicking on the button that says “Join” I believe it is in the upper right corner of the page.