Hello

The reductionist have captured or interest, our minds, our heats, and our wallets! They have convinced us that in order to cure the brain of the symptoms of dementia we need to reduce the causes of the symptoms to the sm

allest amount of human tissue/fluid we can change by swallowing pills and/or shooting various chemicals into our blood stream. How small must we go to change the symptoms? Right now, we are tracking individual cells and their components. Some study individual proteins. Others are going even smaller, looking at our genes and DNAAnd assuming we do find the real causes of each of the many, many symptoms of dementia, how are we going to undo/alter/prevent them? How, how much and how expensive will this process be for those of us experiencing this or that symptom? What side effects of these treatments can we reasonably expect to experience?

Hands in the audience if you truly see light at the end of this tunnel. Stand up if you think we have the turned for the home stretch. Speak up if you believe that just because we say something, it must, or at least will someday be true - someday!?

As for the rest of us - there is still today to enjoy. There is still a purposeful and purpose filled life to live. There is still love to give and receive. There are still songs to be sung, people to meet, need things to enjoy.

Richard

“Dance like no one is watching. Sing like no one is listening. Love like you’ve never been hurt and live like it’s heaven on Earth.” - Mark Twain

I’ll Never Forget (I hope)…

the day I was married; births, marriages, and deaths of family members; past Christmases; vacations, speaking engagements and all the wonderful folks I have met; the Bicentennial (I was the Bicentennial chairperson for Monroe County, Indiana!), etc. Everyone has moments, hours, days that stick in their memories for a long, long time. A psychologist friends of mine calls these crystallized memories.

One of those reoccurring days for me is the day after Thanksgiving. This is the day for the past twenty or more years I put out our Christmas lawn decorations.For me this became a memorable day about eight years ago, the year I was told by a friend wearing a white coat, “Richard you have dementia, probably of the Alzheimer’s type, and certainly with Alzheimer’s features.”

Although I am pretty sure I get the order they occurred, and many of the details mixed up, they are memorial days for me because I can measure my deterorating level of competence in the daily activities of living (other than dressing myself, bathing myself, etc). Do I recall where I stored everything? No! several years ago I simply lost all our extension cords because I couldn’t remember from one year to the next where I Put them. We have been looking for years and haven’t yet found them. Yes we had to buy all new ones!

Can I figure out how to string the lights and hook up the extension chords in the right order? This year I asked my 11 year old Grand Son, Hayden to help me!

Do I have enough self discipline/focus/control of my attention that I can accomplish all the tasks by myself and in one day. This year my Son and Daughter-in-Law stepped in and “helped” me stay on task(s) and get the jobs done.

When I have completed the tasks and plugged everything in, does everything stay lit? This year I plugged the extension chords into the wrong plugs and within thirty minutes blew several fuses. I’m still rearranging plugs and trying to remember how I got it all to work last year.

I know these seem like trivial problems. I know these are problems my family stands ready, willing, and able to enable and support me. I know all this, yet I still feel bad - sorry for my self, I guess. I really hate this disease/process/condition/syndrome!

Hello,

My name is Richard and continue to confront the symptoms of a disability labeled by the medical community as Dementia, probably of the Alzheimer’s type. For those readers in England and West to the international date line— This November newsletter is arriving on the first day of December. For the rest of you I just squeezed in on the last day of November. Such has become my life since my trusted assistant of two years gave birth to her third child and remains at home with her wonderful child (Trinity Ann), while yours truly and his oldest grand daughter attempt to get the cyber-presses rolling and this newsletter out on time (sort of).

This month (still november) took me to Detroit, Ann Arbor, Kansas City, San Angelo, Springfield, and Carbondale. Not to mention turkey days, putting up lawn decorations, and my wedding anniversary. Yes, I travel too much. I just cant seem to stop running away from something(s). They are catching up, and a couple of new ones have passed me. They wait greet me every morning!

“The biggest problem with communication is the illusion that it has taken place” G.B. Shaw.

Action Alert!

What: call your senator today and ask him/her to support Alzheimer’s priorities in the final version of the Appropriations bill.

Switchboard: 1-800-687-3813

When: Today - Action expected at any time!

Congress will soon make final decisions on funding for Alzheimer research and public health programs.

Your Member of Congress is uniquely suited to help advance our cause.

Please call your Senator Today! They each have an 800 number!

Ask  them to require that 50% of Federal research funds on Alzheimer’s be spent on solving the psycho-social problems the disease creates in and between family members.

Ask  them to assure you this bill will not be just a care giver’s bill, but also contain provisions to directly support the personal needs of people living with dementia

Ask them to support research in ALL forms of dementia, not just Alzheimer’s Disease.

Ask them to support Alzheimer’s priorities as she/he considers the final version of the Fiscal Year 2010 Labor, Health and Human Services, and Education (Labor-H) Appropriations bill.

An estimated 5.2 million Americans suffer from Alzheimer’s disease, including as many as 500,000 who are under age 65. Baby boomers (you and your Senators are probably members of this group!) face a future with AD, bringing the total number of AD patients to 14 million by 2050.

Make sure they know why you personally care about Alzheimer’s issues. Tell them you consider it a moral imperative that they personally join your crusade to change the way our culture defines and treats people with dementia.

Your call can be a difference maker with your call.

Your Senators can be  difference makers with their votes.

We can, we must introduce change today to create better tomorrows!

Questions?

Contact advocate@alz.org

Richard

“I’ll never forget What’s his name?!”

I know some folks, myself included, have never been good at recalling names, but I just do not forget people’s names - I do not remember even remembering them. I do not have a clue. I cannot just cough while I quickly rummage through all the names I can recall starting with Q because that is the letter or sound that has popped into my mind. It is not gone, it is as if it was never there, and amazingly, enough I care less and less if I cannot remember it.

I now most times just say, “Excuse me but I can’t recall your name - or where I met you - or how I know you - or who you are.” Can you help me out here? Well, can you? Will you?

Building strong connections in China!

Early on, I set up 50 chat rooms across the world in the 50 poorest countries of the world. I realized everyone there didn’t have an iphone or a lap top, but those who did had no way of using their technology/dependable electricity to connect with kindred spirits, especially when two sprits both were living with the symptoms of dementia and/or were caregivers of such folks.

For over a year, I read the postings and interacted with folks from all over the globe. At first, I thought there would be a wide and deep cultural divide, and we would have different issues, different fears, and different relationship problems. Turned out, once again, I was wrong!

The impact of dementia on individuals, their care carers, their families, their communities is amazingly the same across most cultures I encountered. This is what the Chinese are saying on their new National Dementia web site:

“Being able to truly connect with the person who has dementia can make a great difference to your daily interactions. It can also help in your other relationships with family and friends too!

* Work to build trust and respect - These elements are essential for real connection

* Ask the right kind of questions - Generate meaningful dialogue with open-ended questions that demonstrate you are interested in what the other person has to say.

* Work to increase your awareness and to become an active listener - Give them 100% of your attention in that moment. Do your best to understand the other person’s perspective and thoughtfully consider the intended meaning of their words.

* Read the non-verbal communication - Words are only part of the message and what people don’t say will often tell you more than what they do. Listen with your eyes as well as your ears.

* Speak their language - While most of us understand English, we all speak our own ‘language.’ Know who you are talking with and learn their language.

* Acknowledge their feelings - You don’t need to agree with people to understand them, to respect their point of view or to create genuine connection.”

Good advice I would say for the residents of any country, anywhere on earth facing the issues created by failing cognitive skills. China’s first hotline to counsel elderly just opened in Beijing

www.chinaview.cn

Richard

And, what is it I actually have and what don’t I have?

“Well what if I have Alzheimer’s form and some other forms too? How will any more specificity than what you gave me in your diagnosis help me decide which medications to take, what symptoms I can expect, how I should form, manage and evaluate a treatment plan for myself and my family?” I ask.

“Here is a pamphlet from the Local/National Alzheimer’s Association. Go ask them these questions. I write the same prescription for many of the forms of dementia. I’ll treat your side effects of dementia, no matter what form, the same general way, with the same families of drugs.” s/he answers.

“Well can I, do I ‘probably’ have other forms of dementia too, in additional to the Alzheimer’s form?” I next ask the medical authority I have chosen to help me live with what seems to be a chronic condition (that is another can of worms I won’t open here). “We will just have to wait and see, sometimes as the symptoms progress or new ones express themselves I have to change the diagnosis to some other form of dementia, or recently I have changed the diagnosis to ‘mixed dementias.’”

“Wow, I sure start lots of sentences with ‘well.’ I silently observe to myself.”

“Oh!?” I respond as I walk out of the doctor’s well-appointed office knowing:
A. more than I need to know
B. less than I need to know
C. more confused about what is really wrong
with me than when I first walked in
d. All of the Above.

My answer was d.

“And I paid 20% of a usual and customary charge/a co-pay to know this/what?”

Confusing, is it not. Does it have to be? Why?

This is how Wikipedia defines Alzheimer’s disease - A Mental disorder from brain tissue changes.

Is this what neurologists really mean when they say to someone (such as myself) “You have Dementia, probably of the Alzheimer’s Type?”

Now I ask, “What tissues and what changes produce a mental disorder that has been labeled Alzheimer’s disease?” And so on goes a continuing conversation with others and myself. I am increasingly unsure why I carry on these imaginary conversations in my head. Is it me or the disease talking?