Day 44 – Living with Alzheimer’s – Rick Phelp’s Video Log

Today Rick decided to write instead of doing a video  Here are his words…

Defeat. That’s what this disease does. It defeats you, hour by hour, day by day, week by week, month by month, and year by year. Until you know you have lost. I don’t know anything about the progression rate. I don’t think anyone does, and if they tell you they do its just an educated guess.

I do know I am either having a string of bad days here, in a row, or the disease if progressing rapidly. I can tell. Somethings not right, just like I knew something wasn’t right before my diagnosis. I have them foggy days way too often, way longer now than I ever did, and way more severe than ever.

I am going back to our local Doctor as soon as I can get in, I would say first of next week, he’s really good at getting me in, knows when I or Phyllis June calls for me, there is something wrong. And there is indeed something very wrong.

See thats the thing with this disease. I don’t know how I should be and dont’ think anyone else does either, least my local Doctor but I need to start somewhere.

The fear this disease makes you feel is almost imbearable, and is imbearable at times. We didn’t get to bed till late, after midnight. And it was 1 something when I looked at the clock. I was wide awake, trembling at 3:15. Not knowing where I am, what to do. It is such a horrible thing to go through.

I know just as well right this very second things are not right, as I did five or six months before I was even diagnosed. That’s how sure I am something is wrong. Getting someone to believe me, and try to do something is the hurdle. Try telling someone how you feel, when you don’t remember how you felt. It’s the damnest thing I have every seen, or ever could imagine.

I talked yesteray to friend on the phone, she said you know, one would never know you have a thing wrong. I thought if she only knew. All the time we we’re on the phone I pranced, and worried about whatever. Thats what I am going to start calling it, worrying about “Whatever”, cause I can’t even tell what the hell is going on, so it has to be “Whatever”…

I look at this post, see its several paragraphs long, and wonder what it says, I can not tell you what the beginning of the post is. I just sit here and type, hopeing my words don’t run together. Like making a video on a bad day, just typing it.

This disease will take your very soul. Every thought, every memory, every glimse of a day when you once was normal. You cannot remember a time you didn’t have this disease. I cannot remember a time when things were normal. When I couldn’t wait for tomorrow, because something special was going to happen, Phyllis June and I maybe were doing somthing special.

Now today, right now is my time. Because I won’t know what yesterday was like, what I didnt’ do right, what by the grace of God I might have did right.

This disease will win. I know that adn have made peace with it. But I have not made peace as to the way it does win. Robbing you every second of every day of being yourself. Taking what little memories you have away, adn making you into a person you don’t even know. I think it has won. I don’t see how I can go on, if things stay the way they are right now.

This is my video for today, typed instead of doing one. I will still do one because I promised myself to do that. I really believe someday, maybe even ten years after I’m gone, my video’s will reach someone, help someone better understand this thing we call EOAD. And maybe be a small part of helping some Doctor understand why we do the things we do…

I am lost…the Rick Phelps I knew will never be here again. I only hate that my loving wife has to sit by and watch as I slowly disapear from here, one day at a time

Rick has been diagnosed with Early Onset Alzheimer’s Disease  EOAD.  I will posting these videos as I get them from Rick.  If you are interested in truly understanding what it is like to have Alzheimer’s or are caring for someone with the disease, I believe these video logs will change your life in a positive fashion. 

Please don’t forget to check out Rick’s newly launched website:

 Living with Alzheimer’s 2011          http://www.livingwithalzheimers2011.com/

In addition to this video sequence, Rick has also started a group called “Memory People” on facebook.

The group is for both people with Memory Loss and their Caregivers.

Memory People is a Closed Group so to sign up for the group is a bit different then being added to other groups on facebook.  This is done to protect the group and maintain privacy which is a critical component for the people in the group. 

To become a member you can ask someone who you know is a member to invite you into the group or you can befriend one of the Administrators of the group.  You will be asked to give us brief bio as to why you want to become a member.  For example 1) Are you a person with Early Onset Alzheimer’s disease, 2)  Are you caring for someone with dementia.  You must be approved to become a member.

All Conversations are private and are not posted on your home page of facebook.  Conversations are only posted within the Memory People site.  This is what makes Memory People a closed group. All members agree to keep conversations private within the group.  This is required of each member in order to be respectful of each other’s privacy.  Conversations on this site are at times extremely personal and the intent is for them not to become public.  Republishing of information in any format  on blogs…articles… books… videos… without prior written consent from individual is forbidden. 

Here are instructions on how to join “Memory People” on Facebook.com

 

1)      Log into your facebook account.

2)      If you have not signed up for a facebook account yet, you must do this first.  Once you have done this you will have a home page and can follow the directions below.  To sign up for facebook, google facebook.com and follow the directions.  It is very simple to do.  I did it!  J

3)      Once you are logged onto your home page you will see a search box just left of the facebook logo located on the upper left corner.  To the right of the Facebook logo is are icons of the little people, a bubble comment, and a world icon.  The search box is just right of these icons.

4)      To become a member you must be invited into the group by one of your friends who is a member or be approved by an Administrator. 

            A)  To be invited in by someone you know who is currently a member just ask them.

            B)  To get approved by an Administrator, Type in one of the Administrators names listed below & push enter.

                        Administrators are:

                        1)  Marcus Bennett

                        2)  Jim Judd

                        3)  Kathy Bostwick

                        4) Tom Miner

                        5)  Donnamarie Baker

                        6)  Tia Matthews Bookless

                        7)  Cheryl Stevenson Kearney

                        8)  Lori La Bey

                        9)  Rick Phelps

                                    a)  ON the Administrators site you will see is an Add as

                                        Friend button.   Click on that. 

                                    b)  A new window will pop up. 

                                    c)  There you need to click on the bottom left corner

                                         where it says Add a Personal  Message. 

                                    d)  When the box pops up Type in –

                                                1)  Request Membership to Memory People

                                                2)  Tell us if you are a person with Alzheimer’s

                                                     disease or if  you are caring for someone.

                                                            For example:

                                                            1)  I have Early Onset Alzheimer’s,

                                                            2)  I am caring for someone. 

                                    e)  Push Send Request

5)     The Administrator will receive you request and have to approve you in order to become a member.  This typically is done within 24 hours.

6)    Once you become a member you will be asked to write a bio on your Alzheimer’s situation.  These can be brief or as long and detailed as you like.  The reason we ask for the bio is to help members see who members of the group are.  These are also used for quick reference when communicating with one another.  Members can take a quick glance and refresh their memories of personal situations of others which helps in conversation flow.  Theses bios will become more and more important as membership grows.  The bios also assists those with memory loss to feel more independent by being able to check or recheck this information on their own without the embarrassment of having to ask someone to repeat their story.

WE look forward to you becoming a MEMBER of Memory People!