research

POSTPONEMENT AND MORE PATIENCE

Like a road leading to nowhere, help for Alzheimer's research is like a long road leading nowhere.

Government help for Alzheimer's sometimes seems as pointless as a long road to no where.

A good while back I read an article which gave some hope to a timeline when the puzzlements of Alzheimer’s might be solved or at least the disease would be effectively treated.  Granted, five years ago it wasn’t a promise and I don’t even recall where I read it.  However, the writers implied that some kind of breakthrough could be expected within 10 years – right around the corner – I thought. Since then I’ve read a zillion more articles and plea letters, but without any time frame.  While I knew that even 10 years for Ken would be too late, that ray of light gave hope to the Baby Boomer generation and my family.  2016 wasn’t all that far away.

Recently, we have a report from the special committee representing the National Alzheimer’s Project Act, NAPA, titled “Draft Framework of the National Plan to Address Alzheimer’s Disease.” What?  How many steps back was that?  Victory was the cry from Washington and applause was heard from the Alzheimer’s Association. It has not been well received by the Alzheimer’s Community and has raised the ire of many. A two and a half page comment by blogger Richard Taylor and posted on The Alzheimer’s Reading Room mentioned that this committee report was nothing more than a draft of a plan to plan to write a plan, and paraphrased a Woody Allan quote, “Life can be awful.  Now it has gotten worse!”

Apparently it boils down to more wasted time and money with no real plans to get to the problem which for loved ones and victims is AD.  But then what do bureaucrats do best?  Waste.  Not to mention the draft to plan to plan to plan took one year to compile.  Next report (plan) is promised in May.  Hasn’t anyone reminded Washington that the camel was designed by a committee?  If the camel with one hump isn’t strange enough, it took two committees to design the camel with two humps.

When we moved into our community many years ago the city and county officials ordered a study costing a good lump of money to find the most troublesome intersection in town.  My question and answer at the time was, “Why a study?  Just ask me, I’ve been there.”

Thirty years later it’s still our most troublesome intersection, but they’re working on it.  Sound familiar?

NAPA did arrive at five goals:

  1. Prevent and Effectively Treat Alzheimer’s Disease by 2025
  2. Optimize Care Quality and Efficiency
  3. Expand Patient and Family Support
  4. Enhance Public Awareness and Engagement
  5. Track Progress and Drive Improvement

The only one that’s truly important is No. 1, and how about cutting off five to seven years.

No. 2.  Optimize Care Quality and efficiency.  Really?  Authorities can’t even keep up quality control and efficiency with the existing care facilities.

Looking at No. 3: my friend cares for her AD mother whose disease is somewhere between mild and moderate.  Cherrie tells me funding was cut for the Dementia Day Care where she had been taking mom two days a week for the past several years.  Mom no longer gets to go. That’s not an expansion.

Enhance public awareness.  I believe the public is very aware of Alzheimer’s and its destruction.  Are they going to have Engagement police to force involvement?  Engagement will always be a matter of choice.

What is No. 5?  Why does Government have to track progress using up valuable dollars which could be better used for research?  Researchers issue their own reports on progress, success and failure.  Does drive improvement mean nag?  Who?

It has been said that funding from Medicare and Medicaid will be cut to help fund Obamacare.  If this is so, where is government getting the money for NAPA?

No, I don’t have answers for any of the above, or for the 10 million people with Alzheimer’s including my husband, my now-deceased father and mother-in-law, and my own mother also deceased, but I do know that changing the title from “The Dementia Crisis” to “The Alzheimer’s Crisis” won’t even put a finger in the dike, nor will four out of NAPA’s five goals.  Does all the hoop-la about the name change and the forthcoming plan imply that all of our public health problems under the microscope of Health and Human Services could be solved if only AD went away?

The Dementia Umbrella, with all of its brain altering diseases which includes Alzheimer’s, is what’s in crisis and all of those many victims are slowly slipping away; dying twice.  Does the title The Alzheimer’s Crisis mean to ignore all of the others, or is it because AD has skyrocketed to the No. 2 most-feared disease next to heart disease?

We already know there is urgency in finding at least a viable and enduring treatment without sacrificing precious funding foolishly spent on endless study plans, discussions and hyperbole. We, who have lived/live with AD, like our city’s bad intersection, have been there. No longer strangers to the disease, it’s been a part of our lives for years and we don’t need to waste any more money on these silly committees, paper-shuffling studies, or congressional members who stand around pontificating, pondering and shaking hands with one another for what they believe is a job well done.  We need the money to go into research and, perhaps, some help for those who are draining their life savings caring for an AD loved one.  The Dementia Umbrella is filled with catastrophic illnesses and they are world-wide problems with Alzheimer’s as No. 1.  Just fix it.

Originally posted 2012-01-28 05:08:43.

THE SEASON OF MIRACLES

cloudy sky

Looking towards heaven we remember the miracle of Easter, and gain hope for other miracles.

“Then why do we have Easter bunnies?” asked Haley, a few years back when, as an extended family, we talked about the holiday and all of the traditions.  The little ones gathered with us that evening were the third and fourth generation of Ken’s and my progeny, but one doesn’t have to be very old to question rabbits, especially small bunnies, hopping around delivering Easter Baskets.

“Tradition,” they were told by one of the adults, who continued to explain how bunnies and chicks born in the spring represented new life to the ancients, many of whom converted from pagan idol worship to the teachings of Christ, but brought with them some of their pagan symbols.  Over the centuries those symbols became intermingled with the “new life” of the resurrection of Jesus on the third day following His crucifixion.  Succeeding years of symbolism and generations of adding glitter to old traditions, we as a majority Christian nation seem to be more caught up celebrating the season of new life with colored eggs, jelly beans, chocolate bunnies and marshmallow chicks than we do the resurrection and “new life” of our Lord Jesus Christ, which of all miracles is the miracle of miracles.

During His ministry, Jesus performed many miracles which are recorded in the New Testament for us to read, honor and ponder.  And today — miracles continue.  There are countless miracles, recorded and testified to in these modern times.  I am one of them.  Following last year’s automobile accident and being somewhat aware of my numerous injuries and the trauma encountered, I mumbled from my hospital bed, “I should be dead.”  My grown children made no comment, but I could see worry in their eyes, nor did the medical people who constantly surrounded me confirm – or even suggest to me that my condition was grave.  It was later that my young friend, Malena, a former member of an  EMT ambulance team agreed, having been present and an observer of similar accidents where the victims were pronounced dead at the scene.  I am here because of the prompt, efficient actions of another EMT crew, amazing doctors and nurses — and the absolute, undeniable healing power of prayer, the laying on of hands and God’s grace.

There are skeptics, of course, but as a woman of faith I choose not to be one of them, instead I give credit where credit is due.  I accept miracles and wonder how the doubters explain away that which is right before their eyes.  Many in the medical field have witnessed and have been a part of other miracles and some share the experience with the world.

From two different sources on the internet comes the account of Jeff Markin, an apparently healthy man of 53 who was on his way to work when he was overcome with feeling sick.  He called his boss saying he was sweating and suddenly felt ill, and that he may not make it to work.  Encouraged to go to the hospital Markin arrived at the emergency room of Palm Beach Gardens Hospital in Florida and collapsed on the floor with full cardiac arrest.  After 40 minutes of intense effort and being shocked with a defibrillator numerous times Dr. Chauncey W. Crandall, the supervising cardiologist was summoned.

Dr. Crandall said the room was like a war zone with everyone doing all they could to save the man’s life.  However, Markin showed all the signs of death: the heart rhythm flat lined across the screen, his pupils were dilated and it was determined he had been “down” too long for any hope.  The other doctors left, and time of death was determined and recorded.  Dr. Crandall signed his name to the report and turned to leave.  At the door he heard a voice telling him to pray for this man.  Busy with his work load and feeling rushed, he continued into the hall.  Again, he was stopped short and instructed a second time to pray for this man.

Returning to the patient’s bedside where a nurse was preparing the body for the morgue, he placed his hands on the man’s chest.  Markin’s fingers, toes and lips were literally turning black from lack of oxygen when Crandall honored the Lord’s command and began to pray, crying out for the man’s soul.  At the conclusion of the prayer, Crandall asked the ER doctor, who had returned — wondering what was going on — to shock the patient one more time.  Out of respect for his colleague, he complied.  The monitor showed a perfect heartbeat.  Jeff’s fingers and toes twitched, breathing resumed and he began to mumble.  Three days later with the patient still in ICU, Dr. Crandall found Markin sitting up and alert with no brain or organ damage and a healthy heart.

As with all miracles, there is no explanation, nor is there a reason for Jeff Markin’s healed heart. Furthermore, the good doctor makes no effort to provide one.  A Christian all of his life, he made it a policy not to mix his religious beliefs with his practice.  However, he began a search with prayer and the laying on of hands as another avenue to healing when his son was stricken with leukemia.  Dr. Crandall has written “Raising The Dead” chronicling his experiences.

He also commented about faith and its importance, quoting from scripture a portion of Matthew 17:20 when Jesus said, “If ye have faith of a mustard seed…………..nothing shall be impossible to you.”  On the video I watched, Dr. Crandall concluded Markin’s account with, “Miracles are real, and they are real today.”

I pray for Ken that he may be comforted in his affliction, and I pray for me that I may continue to cope, be patient and find joy in my service to him.  This is our assignment, and while it is an assignment I could do without I also understand its importance in a very broad sense.   Every reported case of AD presents to the medical community the urgency of escalating their research.  If Ken’s illness helps to spur that research, even one little bit, it may save future generations from this miserable disease.  I pray for our ability to manage what we are dealing with, not for the Lord to give us a miracle and remove our burden.

Ken and I have had our portion of miracles, including being blessed with full, rich lives — not without our share of other adversities — which have made us stronger.  Moreover, we take delight in our wonderful, ever-growing family – all of them miracles in their own right — and I am still here to care for my husband and be with him as he continues his lone journey home.  Ahead is the assurance for the most important of miracles: new life somewhere in the distant future — all because of that magnificent miracle which happened on a bright, spring morning nearly 2,000 years ago.

As fellow Christians do we really need to be reminded that there is more to Easter than baskets and candy?   The answers might be “more than likely,” “probably,” “I suppose,” and ultimately, “yes,” because we are human, and we become distracted getting caught up in the ways of the world, the pomp and pageantry we have created – and don’t forget — the good taste of chocolate bunnies.  Yes, we do cast a fleeting shadow on the simply stated – yet — majestic message of that long-ago Sabbath morning:  Jesus lives.

Hopefully, in celebration of this Holy Day we call Easter, let us all take the time to peek through the shimmer of cellophane grass, past the colorful, hard-boiled eggs and jelly beans, and gratefully look for and remember what’s important on this and every Easter Sunday: the miracle of the resurrection of our Lord Jesus Christ and His extraordinary promise to all mankind.

Originally posted 2011-04-23 04:17:25.

BRIEF ENCOUNTER

Today I took Ken to our HMO for his monthly vitamin B12 shot, now a necessity in his life after having three feet of intestine removed about 12 years ago because of severe blockages caused by chronic Crohn’s disease.   He has done well in that avenue of his health, but as memory continues to fail, he becomes resistant about me taking him in for the shots.   When I can catch him in the right personality he comes with me willingly, almost remembering how he teases the girls in the lab with his Navy-days tattoos.

I pulled a number and we sat down to wait our turn.   Sitting close by in a wheel chair a merry sort of man struck up a conversation.  I could see that he had lost his foot and a good portion of the lower leg.  A few minutes into the exchange I thought to myself, another victim of Alzheimer’s.  He and Ken chatted back and forth enjoying their moment.  I heard the man mention his wife as he motioned toward the desk.  I assumed she was signing in for him.  She was, and momentarily appeared from around the corner looking a bit startled that we were all talking.

She looked around Ken and over to me mouthing the word:  Alzheimer’s.  I knowingly nodded pointing to Ken and said, “Him too.”    We did not exchange names although I wish we had.  As our conversation continued  I observed that the man was nice looking, possibly with a mid-European background.  His olive complexion was in excellent condition and nearly wrinkle-free.  Mrs. Merry man appeared to share a similar heritage, yet she looked drawn and weary without the same sparkle in her eyes as he had in his, but after all she was the caregiver.

I asked how long he had been afflicted.  She answered, “Four years.”  “Five for me,” I said.  Commenting on his jovial manner I continued, “Is your husband always this happy?”  The woman rolled her eyes and I said, “Nor is he,” nodding again toward Ken.

The nurse called the merry man’s name and he rolled himself into the lab.  She and I continued to talk with Ken still sitting between us.  “My husband is also diabetic and has lost his foot,” she said.   “This makes it even more difficult to care for him, but we persevere.”  “Are there times when he forgets that it’s gone?” I asked.  She nodded.  Like us they had children who do what they can.

We concluded our short acquaintance as her husband rolled himself out from the lab, joking now with the laughing nurses.  I could see such similarities in both of our men.  Had we four met a few years back I wondered if we might have become friends or was it the disease that made me feel a kinship with her.   As she took hold of the chair handles I couldn’t help asking one more question, “He looks so good,” I said.  “How old is he?”  “72.”    “Wow,” I exclaimed.  “That’s young to be where he is.  Ken is 82.”

I thought of her later — and him.   Did they have any time to enjoy retirement?   Had they traveled at all?  Did they get to do any of those things they may have dreamed of when planning for those “Golden Years?”   This terrible disease steals lives, marriages and futures.  Between these two men there are nine years of lost productivity, contributions to society and just plain living.  Alzheimer’s is no respecter of persons or of age and I still feel anger that it’s taken the medical profession so long to begin research.  Research that could have started in 1906 when Dr. Alzheimer’s wrote his first paper.   What did it take to finally get their attention?   An epidemic?  Or is it that people of note are becoming afflicted?  While I am grateful for the research underway it’s too little and too late for Ken, Mr. Merry and countless others.

Originally posted 2009-04-10 05:50:01.

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