I Have This Terminal Disease,
It Moves So Slow It Is Killing Me!
One of 25 Best Alzheimer’s Blogs of 2012
Mike Donohue is a brave man. Courageous, direct, and bold, his blog energizes readers with a passion for action. Dementia Endured gives a hint in the title as to the nature of this talented writer: he will endure. And with a personality like Mike’s, it’s easy to believe that he shall overcome, as well!
His life experiences are opened to the reader, and his journey recovering from alcoholism to adjusting to Alzheimer’s holds its own fascination for visitors to his site. Mike’s strength and determination will remind readers that dementias are one area in which it’s best not to hold any punches.
Monday, January 31, 2011
Sunday, January 30, 2011
Alzheimer's Drugs in Trial, Part 1
Should patients and families really expect new drugs to be available soon?
The recent wave of failures of Alzheimer’s drugs in trial has heightened the sense that pharmaceutical company investment in this area is risky, reducing funding and causing companies and individuals to consider leaving the field. So showing a little love for researchers in the pharmaceutical industry is a good thing. “We’ve tried to convey that research scientists who come to work every day in America’s biopharmaceutical companies are committed to finding a cure for Alzheimer’s,” says Mr. Belkin.
Of the 98 drugs in the PhRMA report, six are listed as being inPhase III clinical trials. However, three of those drugs had already failed in trials by the time the report was published. The remaining three are anti-amyloid treatments, and one of them (bapineuzumab) is being tested only on people without theAPOE4 genetic variation.
If those Phase III trials are successful, and regulatory bodies like the U.S. Food and Drug Administration approve the drugs, they could conceivably be on the market in many countries in less than five years.
What about the 38 potential treatments listed in the PhRMA report as being in Phase II trials? With an average of 44% of drugs in Phase II transitioning to Phase III trials, and applying the 47% chance of Phase III drugs getting to market, perhaps eight of these 38 potential treatments could eventually be available. But it would certainly be more than five years before any of these drugs now in Phase II were on the market.
So, if past experience with developing all types of drugs were a guide, then Alzheimer’s patients and families might expect to see one new treatment on the market within five years, and a handful within ten years. Developing neurological drugs is more difficult and takes longer than other types of drugs, though. The uncertainty about the causes of Alzheimer’s adds to the difficulty. It’s too pessimistic to predict current trials will end in failure – we need to wait and see what the data says. But I think it’s too optimistic to plan your life around new treatments being available anytime soon.
- How much concentration of effort is there about how we are not now positioned to combat the coming catastrophe soon to happen, or, what needs to be done to avoid it or ease its impact?
- There is so little being done about the Cost of Care escalating beyond all reason and our impotent indifference to be up in arms about that. The profit the Care Industry, the Pharmaceutical Industry and the Medical Health Insurance Industry are looting from us in their disingenuous ministration hiding their purpose of nothing other than more earnings continues unabated. Where does the Alzheimer’s Assn stand on this what are they doing to correct this?
- Why are they not doing more to propose and initiate services to help us survive in the face of the ravaging disease? Mary Kay Braun has survived. She is representative of a group consisting also of my friend Jay Smith, and others, who call themselves “The Survivors” because that is what they are doing. I like to count my self as one of them.
Saturday, January 29, 2011
Whether or not the evident dementia is aging, vascular insufficiency or the Buzzword Alzheimer’s Disease (AD) is not at all important. The treating and caring folks have such a need to classify illness. When they see dementia not a result of stroke, vascular insufficiency, trauma, tumor, all the kinds that are known to be caused by specific conditions and events, they have to put a name on it before they can treat it.
AD is but a broad category of dementia, progressive in kind, and experienced more by older than younger people. It is not an illness; it is a class of disorder similar in nature to other like kind, but each one different than the other.
AD has as many kinds of it as people with it. How it differs from Dementia in general is the sum of the adjectives that describes it. Like all dementias AD results from a brain dysfunctioning often secondary to incipient damage happening to the brain.
It is produced by unknown causes, probably many different ones, each producing manifestation personal to the person having it and in the way that person is different from every other person. No one knows how it is caused, what it in fact consists of. After spending untold amounts in research they are no nearer a cure than was cancer in its early history the cure for which is yet to be discovered.
In Analogy AD in each individual case of it is as different, one from another, as each view seen with the twist of a kaleidoscope is different one right after another. Never is one view like another.
It has reached the realm of Buzz because of the stereotype enshrouding it. The classic Metaphor of it being the guy standing in the corner, drooling, unable to find his way out of the corner entrapped in his frontal view of his world.
AD comes to that as mine will in time, I hope in a long time from now I am intent on doing all things necessary to maintain my quality of life as long I remain functional.
The beauty is this is doable. In my case it is doable because my wife was able to see it very early in my digression. I believed she was nagging me about my driving when in fact she was seeing enough difficulty that it caused her alarm. She went to the doctor, I thought the two were ganging up, I tried a driving simulation exam given by the Sister Kenny Institute in
Later diagnosis and testing produced evident deficiency in my visual perceptual ability along with severe limitation in my Executive Planning and Multi-Tasking abilities. This was very consistent with the findings on the driving simulation test validating the reason for the failures I had with it.
Was this diagnosis easy; was it a piece of cake? No way! It was an abrupt paradigm shift in the lives of my wife and me. It also extended to my children, my grandchildren and my close friends. The beauty of it is being human we weathered it, we adjust, and we have the uncanny ability to make the best of things if we simply put a good positive attitude to it.
That is what AD has done for me. You can find it in my writing, in my blog, it became a gift. All was lost, nothing more to lose, I was still alive, was blessed with surviving cognitive ability in the face of the many functions lost or in which I was limited. I could still read and write and my attitude persisted to use that to make the best of it.
That has become my life: Writing about AD from the inside out. Giving witness to the fact that with early diagnosis a quality of life exists for the person diagnosed.
Friday, January 28, 2011
Thursday, January 27, 2011
Wednesday, January 26, 2011
Tuesday, January 25, 2011
Monday, January 24, 2011
DELUSION AND DENIAL HAVE SO MUCH MORE TO OFFER THAN ACCEPTANCE OF SOMETHING YOU WOULD RATHER NOT ACKNOWLEDGE
Sunday, January 23, 2011
Saturday, January 22, 2011
Friday, January 21, 2011
- Take the patients history; include all possible events that relate to the conditions bringing the patient to you.
- Make a list of all possible causes the complaint might have
- Based on the history,
- Based on your own knowledge bank
- Based on the literature relied on in your practice, namely, Text, Peer Reviewed Journals, etc, then,
- Make a second list of the tests that can be administered to determine the cause.
- Do that and include every test possible
- If the tests fail to determine the cause,
- Look at what the tests ruled out as cause of the complaints.
- Then: Look at what has not been ruled out, one or more of these are it!
Thursday, January 20, 2011
Wednesday, January 19, 2011
Tuesday, January 18, 2011
A vexing story recited in the case study, daughter of father, is sad beyond sad. Read about it in the New York Times New Old Age column having the title: Resisting Alzheimer’s Click on it or on Archive to read it.
Monday, January 17, 2011
- Lost Income
- Loss of job or diminished work capacity of person afflicted with AD
- Diminished work capability of spouse caused by time for care, need to take leave of work for care, or cost of supplying care while spouse works to support the family.
- Replacement of services in home and for family with diminished capability of one of the spouses to fulfill share of family tasks. Too numerous to list, it starts with obvious stuff, e.g. house keeping, cooking, cleaning, yard work, grocery shopping, etc.
- Direct Expense
- Medical and Drug expense not covered by insurance, subject to co-pay, deductibles, & gaps (e.g. the Medicare Prt D donut hole amounts to $4500.00 which is reached easily with accelerated cost of AD drugs, usually accompanied by high cost of other non generic drugs where generics not available)
- Care expense at home
- General home care
- Day care
- Recreational care
- Medical home care
- Cost of home health aids and prosthetic devices.
- Daily day care or night time care
- Assisted living care
- Nursing home care.
On average in Twin Cities Metropolitan Area Assisted Living Care outside the home costs on average $6,000 a month which equal $72,000 annually.
- On average in Twin Cities Metropolitan Area Nursing Home Care costs on average $7,000 a month which equal $84,000 annually.
- On average in Twin Cities Metropolitan Area Care Costs on average $20 to 5
- $50.00 an hour (and higher if specialization required)
Sunday, January 16, 2011
The Impending Onslaught of Alzheimer’s Disease (AD)
- Medicare is strapped financially and states are whittling more of it away. The electoral mandate expressed in the forthcoming legislative process will prune more of the social and health programs designed to aid to the needy, just as the legislation changing “Welfare as We Know it” some years ago virtually repealed welfare in this nation.
- The Federal Deficit and the political majority mandated to “Starve the Beast” will prevent furtherance of programs to provide support for people affected by AD.
- Social Security is likely to be curtailed further limiting ancillary support for family wage earners stricken from employment because of AD.
- People suffering AD progress to the point they need care unable to care for themselves. This progresses into greater needs of care as the afflicted proceed through the disease.
- Although many remain functional and able to self care in the Early Stages of AD, progressively they need Home Care, Day Care, then Assisted Living then Nursing Home care. Home Care if provided privately, families unable or incapable of providing it causes this challenge; as greater need of it grows the cost of it becomes more than either Assisted Living or Nursing Home Care.
- If not paid by Medicaid the Cost of this Care including ancillary services is the individual responsibility of the individual needing it coupled with the joint responsibility of the spouse of that person.
- The Cost of Care has escalated becoming confiscatory of individuals savings and severely strains government. This escalation seems out of control. Certainly in the current political climate it is unlikely to be subject to any control if attempted.
- Unless the personal financial estate of spouses is less than the approximate sum of $103,000 they will not qualify for Government Assistance until they jointly relinquish or pay down their entire savings and property other than homestead to that amount. [i]
- Although 103,000 is a large number, when offset against the normal family budget it will not last long. When the one afflicted starts receiving Medicaid, the spouse not financially assisted still has the obligation of paying the family budget to live.
- When the family budget eats up the remaining estate the separate spouse has no other recourse. There is no welfare program to assist.
- This makes the afflicted one the ward of the government and the spouse out in the street if unable to pay the cost of living in the homestead.
- The number of people facing this predicament is growing and no real plans exist to assist.