Monday, May 21, 2012

Response to the National Plan to Address Alzheimer's Disease

Our publisher, Johns Hopkins University Press, invited us to write a "guest post" on their JHU Press Blog in response to the much-discussed and debated National Plan. It can be found here.


  1. Part 1
    Why do we not change "Alzheimer's" to Memory Loss?? Not everyone with Memory Loss has Alzheimer's. It puts a stigma, a label on people with Memory Loss. If someone has Cancer ,do we all assume it is terminal? Does a physician immediately tell a patient they have 5 years, or 10 years? Not without all the testing that can be done to explain the disease., and the “options” they have.
    Times are changing, science has a lot more answers, and more to come with Memory Loss.. I feel sad when I read articles on Memory Loss...( Mild Cognitive Impairment (diagnosis not a disease), ....everyone assumes it's Alzheimer's, and not one of the other diagnosis or Diseases such as Frontal Temporal lobe dementia, Lewy Bodies, Primary progressive Aphasia, Corticobasil Degeneration, or Progressive Supra nuclear Palsy. As these diseases progress they have similar impairments, but each has it's individual impairments and should be treated and diagnosed properly in fairness to the patient, just as a cancer patient is, or any other disease, everyone wants the "right answer whenever possible so we, and our family can deal with and plan for the future the best way possible. "Christine Bryden" is a good example of this, Author of "Living With Dementia"

    I find this interesting stigma we are given, when the fact is medicine cannot diagnose Alzheimer's without an autopsy, they can only assume like they did with my father 25 years ago (we still do not know, because no autopsy was done) so what has changed in 25 years, certainly not assumptions, we are still being dealt assumptions, why? Why is Lewy Bodies diagnosable and all the rest…..and not Alzheimer’s. Because they have not yet been able to “crack the code” the base of it all. It will take much more research I fear.
    This is my diagnosis , Memory Loss, my life, my health. Why can we not have a chance to try and exceed and proceed in our lives with Hope? I strive daily to treat my diagnosis (not disease) as a challenge to look forward to tomorrow and next week....with Hope, not assumptions., but being truthful with a patient and being given the ability early to plan ahead, and live life the fullest, not with false hope, but truthfulness of a diagnosis., with some “tools” to better their quality of life in the future, not discouragement, (the Memory Loss does that all on it’s own). Suggestions follow hat one can do.part 2 to follow. Mymemoryloss

  2. Part 2 of mymemoryloss...Blog
    I am grateful for Mayo Clinics HABIT program,(Healthy Actions To Benefit Independent Living), a clinical study we were Blessed to participate in. (they still have) .They showed us how and encouraged the use of a daily calendar, (my second bible). They taught us daily forgiveness within ourselves, gratitude for people around us, celebration for our life, compassion for our care partners ,acceptance of who we are as a person, and our situation , focus with Higher meaning, and prayer & reflection. They taught us to Participate in chair Yoga 5 days a week, eat a good Mediterranean diet, (by the way these are all good for your heart too). Take part in games such as cards, computer games, soduko, all active intervention games. Continue your hobbies, even if you have to push yourself a little. Stay in touch with your friends, (they only know what you tell them for now, and that’s ok).
    Write your thoughts down, they are important, and read a good whenever possible.

    It is my dream and future work to help make a center available in the Fox Valley for persons with Memory Loss. A place where people with Memory Loss can meet and share, a place to be active in changing the "stigma" in our community and others communities, that people with Memory Loss are important volunteers and attributes of any community,.
    A place where people with Memory Loss can meet and call their own to share and learn, and yes...cry freely together with each others support. I recently visited the gulf waters, and on shore I planted my feet so the water could run up over them, a sweet and soothing feeling, but the sad thing was as the water left…so did the sand beneath my feet, leaving empty spaces, strange feeling, not very soothing, so also go our minds, like small particles of sand , empty our visions as we knew them. And as those small particles leave, so do we get “strange feelings”, strange emotions we have never experienced before, and worse, we cannot help it ,or explain it, as cancer, if you have not experienced it , you cannot know it, please do not judge or get angry at us, when we fail with Memory Loss…..

    Signed, Mymemoryloss