phullphilled's Journal

Flops just had a very bright moment. It was like a light bulb went from the size of a Christmas Tree light to a flood light used to illumanate a complete house. In learning to live with Alzheimer's is a very exciting adventure in a way. I know that sounds like it is something fun and great to be experiencing, which in reality is just the opposite. It is forcing me to explore a part of me in which I always wanted to do but could not or maybe did not because I just did not know how or maybe was to intrenched in other aspects of my life at the time to learn to explore this side of me.

What I have found is there are so many great organizations and more importantly the people that have a labor of love that work for these organizations to help people that are in need of learning to live with Dementia, Alzheimers and other brain drain  problems.

My journey over the last year or so has been one of having no purpose at all to even act like I have a life to live, to one of hope, excitement and most of all a bran new purpose to live for. I am going to try to connect all the dots that has gotten me from thinking or should I say feeling like I had no reason to live to one of at times having more of a purpose than I ever have had in giving back to my fellow man, which is a part of me that always wanted to get out and do for others.

It all started, first of all with the appointment I had with Dr Kathryn Park, she specializes in pain management. She is the person that separated Flops (Alzheimer's) from Flossie (depression). She explained to me to difference in how each of these cronic disease was getting all messed up and that I why I basicly was a couch potatoe (Dan Quail moment). She helped me open my eyes and being to my new adventure.

The next person I meet and am so grateful for and really is my central support person in getting in contact with the right people to help me to organize the purpose that I so desparately needed to start living again. Barbara Dzikowski of The Alzheimer's and Dementia Services of North Central Indiana. Not for sure if that is the correct name ob who she works for. I tried to look the name up but found Flops was starting to take over and was losing what I am trying to write so I just did the best I could.

I called the service when I need some information about what to do to get back on my life's track. I just checked back with my email file for Alzheimer's information and find I first had contact with Barbara early December of 2008. She has been the person that has encouraged me to develope my desire to get into public speaking about learning to live with Flops as a partner and not an enemy inside of me trying to destore. Flops and I are learing to hang out together and enjoy our life together and Barbara has been the inspiritation to push me along. She invited me to make my first talk in early 2009 to a group of people that also work in helping so many people that this disease has a direct inpact on their lives. Some of them have been care givers and others have been other people directly working in the health field to help people that have the disease and other people around them.

Barbara then got me in contact with Lisa Snyder, MSW, LCSW, Director of Quality of Life Programs, Unversity of Califonia, San Diego in La Jolla, CA. My first inpression was how wonderful, I have had the opportunity to visit the San Diego area back in the 1900's and what a great beatiful place to live, I would think. Then I just thought but if I did live they I would have to take me with me and my life would have been just as messed up as it was when I lived in Arizona and it just proves it can only be a beatiful place to live if a person are in a stable life and can enjoy the area they live in and that has nothing to do with a persons surroundings. But it was still a great place to live. OOOPPPS Flops popped up and got me off track again. This was in Jan of 2009. I had to look all this up also because no way can I remember all the information I just wrote. I just want these people I am writing about the proper credit and most of all at the wonderful work they are doing in their chosen field of work and working very hard on learning more and helping others to deal with this nasty disease.

I had wrote an article for Barbara a newsletter she puts out to people that use the Alzheimer and Dementia Service. A part of Lisa's work is putting out what I thought was a national quarterly newsletter "Perspectives" I keep in touch with Lisa and send her my journal entries and at first I was unsure if I should add people on to my journal mailing list because I did not want to be a pest. I was good at that as I kid, just ask any of my brothers and sisters. But I have found out that Lisa also is an author and wrote a book "Speaking Our Minds". I am in the process of reading in currently. It has I believe 7 different people she has interviewed over a long period of time that were in different stages of Alzheimer's and have the same desire that I have of helping others to understand as much as possible what this disease is. My article for the "Prespectives" some how ended up in New Zealand and also In Japan. There local newsletter wanted permission from me to print it in there newsletter. How humbling and also somewhat strange to me. I have no training, my grammar is not too good and if it was not for spell  checker everyone would know that I never was asked to even take part in a spelling bee as a kid let alone win any of them.

Barbarba also gave me another person, Susan Carter, who is involved with Madison Center Geropsych Institute here in South Bend. I apologize to Susan, I could not find out what here title is there, I just know she has been a huge help to me, not only for setting up a couple of talks but offers encouragement to me often to keep of writing and doing what I am doing. Earlier this week I was involved in another conference for the "Brain Works" of Memorial Hospital. I had not seen Susan for a couple of months and when we all went to the Geropsych Institute, I was trying to figure out where I was suppose to go and was a little confused and walked right past Susan and she said hi and I said hi back to here and could not place who she was. FLOPS at his worst for me. Susan has been such a big help to me and also writing to me to comment on my  journal's over  the last few months and I was really upset that I could not place here name with her at the time.  This crap is really terrible at times. I am hopeing there will be future opportunites to do what I can to talk to as many people as possible that there is life after diagnoses.

I am not sure who of the above gave me the name of Richard Taylor. He is a doctor of psychology, writer and also a public speaker. I looked him up on the interent and sent him an email asking him for advice on how to get more active in my new adventure. I got an email back from him giving me his phone number and asked me to call him. Richard is in his 8th year of living with Alzheimer's. He is really a remarkable man in doing what he is doing with what he is dealing with. He is also on the board of directors of the Alzheimer's Foundation of America. After talking with me and reading some of my things I have wrote he passed my name along to Carol Steinberg, Executive Vice President of the Foundation. She called me and we talked for a little while and she asked if I would write an article for the their newletter coming out soon. I just emailed one to here. I am not to pleased with how it came out, when I am under stress and life is not going well  I do not write so well. She is going to review it and suggest any changes and send it back for my approval. My friend Pat's 53 year old brother just passed away this week and also I am in the process in changing apartments where I live and that has kind of made Flops a little more active in my life and it is not going as well as I would like. But like I always say, this too will pass. Carol has also invited me to speak at a convention at the end of September in Chicago at a national convertion for the Foundation. I will be speaking with a couple of other people that are taking a pro active appoach to living with this disease. The other thing and Carol has asked me and I am really excited about doing this, is to be on the board along with other people of Early Onset Dementia and Alzheimer's. Too many people and families just do not recogonize or are in denial of having any memory difficulties and  to many times it is not diagnosed until the disease has a tight grip on the person by that time.

I was very blessed in a way of finding out I have what I have because since I was diagnosed very early with the disease it has given me more of my memory and I can adjust as my brain shrinks, gets more tangles and loose more of my being able to function. I do not wish this on anyone, NOBODY. But if a person does have it, I strongly believe the earlier a person can find out they have it and work through their anger, denial, and what ever emotional up heavals they have, the better their life  can be.

All of the people I have mentioned have been so wonderful and invaluable to helping me to have a postive and as Jimmy Stewart would say "A Wonderful Life". Well I do not really agree this is not a wonderful life but it is the best it can be thanks to these many people that have been such a big help to me.  God Bless  Phil & Flops