Tuesday, February 12, 2008

What Is Working for Me

Amantadine 100 mg 2x
Eldepryl 5 mg 2x Also available as a patch (Selegeline)
Zincate 220 mg 1x
Plavix 75 mg 1x

Centrum Vitamins 3x
Vitamin E 400 IU 3x
Vitamin D3 400 IU 1x
Ginkgo Biloba 120 mg 2x Brian circulation
Gotu Kola 870 mg 3x Brain processing, anti-plaque, anti-inflammatory
Schizandra 1160 mg 3x Digestion, regulates blood pressure
Damiana 1600 mg 3x For Parkinsonian symptoms
Omega 3 1000 mg 3x From Salmon oil
White willow 400 mg 2x Anti-inflammatory, replaces low dose aspirin
Passion Flower 250 mg 1x At bedtime, for better sleep
Rhodiola rosea 205 mg 1x Stress handler; dopamine, serotonin, brain
CoQ10 50 mg 3x Blood pressure, heart, brain
Milk Thistle 1x Promotes strong liver to rid body of toxins
Ashwaganda Root 940 mg 3x For brain,stress, pain and tremors
Super B complex 1x Stress, triglycerides
Melatonin 1 mg 1x At bedtime, for better sleep

Bath soak of tea made from Green Tea, Rosemary, Ginger, Lemon Balm and Gotu Kola
3 times per week as an anti-inflammatory

Erika’s Auntie’s Anti blend, a topical lotion of Frankincense, Sandalwood, Lemon, Turmeric, Tulsi Basil, Pine, Ginger, Myrh. Alternating w/ bath tea. For inflammation & pain.

All face and hair products have Rosemary or other anti-inflammatory herbs.
Reverse osmosis water filtering system for drinking and cooking.

High protein diet, Omega 3 fortified eggs every day, organic when I can, no MSG, no "diet" sugars, stress reduction, laugh, enjoy life, exercise mind and body.

Sunday, April 29, 2007

forMemory: Building Hope in Early Onset Alzheimer's Disease

People with Early Onset Alzheimer’s Disease (EOAD) have played an important part in solving the mysteries behind Alzheimer’s disease. Families with EOAD contributed to early genetic studies because the disease pattern, unfortunately, was seen in multiple generations. We who are affected by EOAD want to continue to be a major participant in seeking and finding ways of curing and preventing EOAD symptoms. Early Onset has the most profound impact both on families and society by challenging young families physically, mentally and emotionally. Not only stressing financial futures but often striking before there is even a chance for financial security.

The mission of forMemory: Building Hope in Early Onset Alzheimer’s Disease
is to bring together those of us affected by EOAD, to increase our emotional, spiritual, and physical being through actively and aggressively seeking and finding ways of curing and preventing EOAD symptoms.

Replace Aloneness with Hope
We are not alone. We want to share our emotional support. When one needs that extra something to make it through the day, we want to be able to say “Call me. I will listen. I understand”.

Replace Fear with Knowledge
It takes seeing the whole picture and we each are holding the different parts. With earlier probable diagnosis more of us are still able to communicate. If each one shares the ideas that are working, perhaps the whole picture will come together and our children and grandchildren, brothers and sisters, will not have to face these diseases. It is as simple as "I feel better when..." There is so much learned and so much more to learn. By sharing we distribute the task.

Replace Disease with Life
Aggressively seek new information. Look outside the box. Look at the total person - mind, body, and spirit. In using all there is for us, our quality of life will be higher. Remember the “Nun Study”. There is so much to be researched. There are so many more avenues to pursue. We can open our minds to healing. This is not just a time for waiting and hoping that “they” will find the cure. It is a time to actively learn, seek, compare and research. It is a time for partnering with doctors and researchers.

Replace Silence with a United Voice
Speak out in a united voice. One small voice may be drowned out by all that is out there. By speaking together we will be heard. We who physically, mentally, and spiritually feel the effects of disease can have the strongest voices…for those who no longer can speak. Perhaps by sharing, it will help keep one more family intact.
Maintain an informational web site and blog for communication. The web site also shares the information we find on Early Onset Alzheimer’s Disease with others who are affected by other types of dementia so they may also benefit.

Meet Regularly
Our immediate needs are to be able to meet regularly, either in retreat settings or at informational conferences. By coming together we are not only able to strengthen our spirits but add to our individual knowledge. We have always found educational conferences to provide new information on dementia and an increased level of hope. By setting up display booths when available, we are able to share information on forMemory providing an awareness of Early Onset AD. Through the sale of items we raise funds to help offset lodging, travel expenses, and conference fees for all the families attending.

Work with Pro-active Doctors
As the opportunities arise we work as a group with pro-active doctors to coordinate an informal time shared. These doctors have been very supportive in “looking outside the box” especially for Early Onset AD.

In order to give back to society, another of our projects is to document and compile our earliest symptoms which include not only mental and emotional but also physical symptoms such as numbness, changes in sight perception, dizziness, vertigo, etc. And then what makes us better and what makes us worse. We will be discussing environmental, nutritional, stress, integrative ways, etc.
Later Plans include making available genetic testing for those who desire it.

forMemory members will continue to be leaders in the search for finding ways of curing and preventing EOAD symptoms.
We are asking you for help. We cannot attain these goals without your support. It is collaborative efforts that have the power to adequately address Early Onset Alzheimer’s Disease. We hope this is one step toward those united efforts.

Special thoughts from very hopeful families.

forMemory is a nonprofit 501c3 educational organization

Wednesday, December 6, 2006

Importance of Genetic Testing

Why Genetic Testing ?
I am a person who has been waiting and seeking genetic testing for over 17 years - basically before it was even available. I have contacted researchers, and watched for available testing. So many diseases have been ruled out - but I do not like the feeling of diagnosis by process of elimination, until death. It was in 1995 with our mother’s death and autopsy, that we found the “what” of her disease, but not the “why or how”. I, who five years earlier at the age of 41 had started my decline, had to wait in limbo another five years until one of my siblings also expressed symptoms, to then be moved into “probable” where I will stay until my autopsy.
It is horrible to physically and mentally know and feel that there is something changing in my body everyday and not be told what it is. Limbo is the best description. My identity is being taken away - to be replaced by nothing. Genetic testing can change this.
Personally, the fear of the unknown is worse than dealing with the known. How can I take responsibility for something I cannot even name until after death? And I do want that chance. So I am arranging with my doctor to pay for the few available genetic tests.
Alzheimer’s disease covers a range of symptoms. Currently, there are multiple genes for early onset, the subtype our family faces. Knowing which gene is affected for us, will narrow the path we need to seek to find what will work for us. And that is a very important factor. I want to be able to pass this information on to my family - and the friends across the country who I have met and are dealing with the same questions.
How can we tell what is working? Say in a family of six there are two people expressing symptoms. Are the other four not affected because they did not inherit the gene or because they have done, or are doing something “healthy” which has prevented or delayed the symptoms? Were they not exposed to the same environment to trigger the start? Take the Nun Study where on autopsy they found tangles and plaques, Alzheimer’s disease, but there were no symptoms and she had led a long healthy life? What is working?
If I am doing something, everything, to make my quality of life better - and it is working - how do I prove it? How can I keep the skeptics from saying “You don’t really have Alzheimer’s Disease!”
How do we who have Alzheimer’s Disease help to answer “What do I do now?” How can HOPE, PREVENTION, and QUALITY of LIFE become words more commonly used with Alzheimer’s Disease? Through sharing “What is working for me.”
The drawback - discrimination. Unfortunately this can only be fixed by awareness, and people like us who speak out. Discrimination - when will people be treated equal without martyrs? I am not the martyr, but our family’s may be because of a disease they may or may not have the gene for.
The energies need to be used to fight the disease through knowledge. In asking permission from my husband, daughter, and son to print my book they simply stated, “We almost lost you, what could anyone do to us that would be worse. You need to help other families...”

Tuesday, December 5, 2006

My Journey

This is my journey. I will be sharing with you my progress and research on my path to survival with Alzheimer's. Please comment. I would like to hear from you!

Have a wonderful day