Tuesday, November 27, 2007

My Next Challenge

This entry was written by my friend, Mike Donohue. Thank you, Mike, for sharing your voice.

I was diagnosed as having Alzheimer’s Disease. This is the worst possible diagnosis I could get, short of suffering a crippling stroke like my Dad or losing my eyesight. As I pass from conscious connection with Alzheimer's, I am told I will not know what is happening. The pain of it is suffered by those loved ones around me.

None of this spares me the pain I will visit on my wife: robbed of a partner in exchange for a ward and charged with the effort and the cost of caring for me. I am saddened for my children. I will likely not experience their progress in life, nor growth of my five grandchildren I now have and any more that may come. I will probably not be around or lucid if I am for their weddings and births of my grandchildren.

Although initially devastated by the diagnosis, I quickly arrived at this way of thinking about my diagnosis of Early Alzheimer's. I believe that things happen according to a plan. Whose plan? I do not know. My plan set in this lifetime it is not! Whether it is mine devised somewhere else, the plan of my higher power, or what, I have no idea. It is a plan followed by me in spite of me, taking me often into places and directions I would rather not be. Much of it has been painful. As I learned in Alcoholism, learned before recovery and learned after recovery, I am the better person for having experienced where I have been taken. It all turned out as it ought to have. All of the events have tied together in a definite pattern. I can see this now, realizing it retrospectively. It is seen in the serenity of my senior years which has been one of the best things about growing old. I no longer have challenges to meet, I have met them and my serenity is the result.

I have also known I was not finished. I hoped I was finished but knew I was not. I wondered what was yet to happen. It has been my view that I have not done as much for my family, my fellow man, my world, as I should have. I was troubled that I was not doing in this arena, saw others that were, and felt empty in my self in this regard. When I thought about it I reasoned, if I really believed I was living a plan, if my attitude was willing, the right thing for me to do would come along and I would do that. Although I wondered whether or not I was shirking or just fooling myself, the times I considered this, I was prevented by one circumstance or another from going right out and getting something started. It was in this that I at least felt a little peace about it.

When at peace I would think, I wonder what my next undertaking will be and when it will present itself. I honestly believed that and found serenity by relying on that. I believed I would fulfill the rest of my life with something more that would be meaningful for me. I would find something with which I could leave at least a little mark having helped others.

On June 29th, 2006, I learned what my next challenge is. It was in the doctor’s office when it presented itself. I have Alzheimer’s disease! It was presented to me then and there! What I do about it will be my measure of my last days. I have five to eight good years to find that out, maybe ten or twenty years if I am lucky. I pray to my Higher Power that I have the strength, the fortitude, to make the best of this time. I further pray that I may leave a mark because of this.

Tuesday, November 6, 2007

Treatment Without Numbers

I know a widely-respected neurologist at a prestigious, teaching hospital who once said,

“Treating dementia is like rearranging the chairs on the deck of the Titanic.”

And he’s not alone in the medical community with this philosophy. I’ve heard many stories of doctors, both neurologists and general practice physicians, who are reluctant to prescribe treatment for Alzheimer’s Disease. They believe that the current drugs available don’t make a difference. They believe the current drugs are not cost effective.

Aricept and Namenda do not cure Alzheimer’s.
They do not stop the progression of the disease.
The cognitive capabilities of everyone who has Alzheimer’s Disease will get worse despite taking these medications.
No one gets out of Alzheimer’s alive.

But what about quality of life? What about the value of making each day a little less foggy, less frustrating, less isolated, less stressful for as long as possible? What about living as fully as possible with whatever time you have?

Do doctors not bother to prescribe calcium channel blockers or statins to elderly patients with heart disease because they’re likely going to die soon anyway? Are patients with cancer denied surgery, chemotherapy, or radiation if it’s known that these treatments will only buy time before the cancer ultimately kills them?

In the diagnosis and treatment of any patient, doctors have been trained to measure and quantify. Cholesterol levels are measured. There is a number. Blood pressure is taken. There’s another number. Patients are given medication, and doctors look to these numbers to evaluate whether the treatment is working. The number changed. The treatment worked.

There is no dementia protein that can be measured in the blood. There is often nothing visible in a brain scan. There is no number physicians can point to that can measure discrete changes in cognition. A doctor can’t put a patient with Alzheimer’s on Aricept or Namenda and then in six months say, “Things look great. We see a 25% decline in the accumulation of amyloid beta in your brain.” Or, “Wonderful. Your glutamatergic neurotransmission is up significantly.”

But just because there’s no numerical index of biological improvement that can currently be measured, it doesn’t mean the improvement isn’t there.

We’re all on the Titanic. We’re all going to die. For those of you with Alzheimer’s disease who are taking an Acetylcholinesterase Inhibitor (Aricept, Exelon, Reminyl) and/or Namenda, do you feel like you’re just pointlessly rearranging the deck chairs?

Tell us what you notice about your capabilities and mental health while on these medications. What value do these drugs have for you? Caregivers, tell us what you notice.

What do we know without knowing any numbers?

Lisa Genova, Ph.D., author of STILL ALICE,

Labels: , , , , ,

Location: Chicago, Illinois, United States

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

AddThis Social Bookmark Button

Subscribe to
Posts [Atom]

BBB Accredited Charity