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Saturday 29 November 2014

Possible Disease-Modifying Therapy for Parkinson’s One Step Closer to Patients

Posted by Rachel Dolhun, MD, November 26, 2014 on Michael J. Fox Foundation site.

CBS News in New York shined a spotlight on Parkinson’s research yesterday evening — for good reason. A promising disease-modifying therapy is getting closer to reaching people with Parkinson’s.

Isradipine — a medication currently approved to treat high blood pressure — is being studied to determine if it can influence the course of Parkinson’s disease (PD). Researchers believe the drug works to prevent the death of dopamine-producing cells and therefore might slow the progression of disease. Previous studies have confirmed drug safety and tolerability so testing will now move into a Phase III clinical trial — the largest, and last, stage of drug development testing. The STEADY-PD trial is recruiting over 300 participants with early PD, each of whom will take either isradipine or placebo and be monitored for three years.

Todd Sherer, CEO of The Michael J. Fox Foundation, told CBS News that isradipine is one of several active research areas in Parkinson’s. The Foundation has invested millions in helping to advance isradipine from the earliest testing in preclinical models to the current Phase III trial testing. Positive results from this study would move a disease-modifying therapy for Parkinson’s one step nearer to pharmacy shelves.

This is good news; however, why must we wait 3 years if it is a drug that is currently approved for the treatment of high blood pressure? Let's give it a shot. Like chicken soup for a cold. Can't help. Can't hurt. I guess if something is worth waiting for, you can bet you will be waiting for it.

As grateful as I am for the efforts of Michael J and the scientists working on PD treatments, I say, with respect, I am ready now.

I was reading "Waiting for Godot"(you can find the entire play on line). At first, I thought it kind of stupid. It's not. If I am right, Godot is all those things you are waiting for in life. Well, my Godot is a cure or some drug/treatment that slows down PD's seemingly inexorable attack. That's first on my list of Godots. Second is a burning desire to win the Mega Lottery and, you know, one of these days I might just buy a ticket. I am told that the odds of winning the Mega are the same as being placed on a football field, blindfolded, and given a pin. An ant is released somewhere on the field and the odds of you sticking a pin in the ant rival the odds of winning the Mega lottery.

Hmmm. I hope the odds of discovering a cure, or new treatment, are not as long as that.

Monday 24 November 2014

The Cost and Prevalence of PD in Canada

The Cost of PD in Canada

According to the data gathered by Health Canada, the total cost of Parkinson’s disease to the Canadian economy is $558.1 million per year. That figure includes direct costs to the economy such as hospital care, drugs, physician care, and research. It also includes indirect costs such as lost production due to disability and premature death.

The report also highlights the immediate costs to individuals living with Parkinson’s. Estimates place the cost of medicine at $1000 per month for the typical Canadian living with the disease. Surgery, a helpful option for selected individuals with Parkinson’s, costs an estimated $15,000 - $20,000 per procedure. However, because of the high costs, and the limited accessibility of experienced neurosurgeons, many of the people who qualify for surgery never undergo the procedure.

I say thank goodness for socialized medicine.

Health Canada’s original EBIC report shows that seniors (people over the age of 65) account for almost 25 per cent of the total Nervous System / Sense Organ disease costs. The same report states that seniors account for 90 per cent of the total Parkinson’s costs. This is a particularly troubling statistic considering many seniors live on a fixed income and the number of people over 65 is expected to rise dramatically over the next 30 years. .

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Prevalence of Parkinson’s disease

An estimated 55,000 Canadians aged 18 or older living in private households reported that they had been diagnosed with Parkinson’s disease. This represented 0.2% (95% CI: 0.2%, 0.3%) of the household population, unchanged from the 2000/2001 CCHS prevalence estimate. As well, 12,500 residents of long-term residential care facilities—4.9% (95% CI: 4.8%, 5.0%)—reported a Parkinson’s diagnosis. Among the household population, 79% with Parkinson’s were 65 or older; in institutions, almost everyone (97%) with the condition was 65 or older.

Overall, men were more likely than women to have Parkinson’s disease: 0.3% versus 0.2% (p < 0.05) for those in private households, and 6.6% versus 4.0% (p < 0.05) for residents of institutions.

In general, the prevalence of Parkinson’s disease increased with age, although in the institutionalized population, prevalence decreased in the oldest age group. This may reflect greater disease severity and higher mortality among older people in institutions compared with those in private households. As well, being male and the presence of symptoms such as severe motor impairment, psychosis and dementia have been associated with earlier death among people with Parkinson’s.

Sources- Cost - Parkinson Society of Canada
Prevealence - Statistics Canada>

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Saturday 22 November 2014

Who would'a thought!!!!

It took me about 3 minutes to get out of bed in the middle of the night. Thank goodness there is nothing wrong with my bladder.

Granted, the bed is high, but that's not the problem. The problem is the sheets grabbing on to me and my weak arms failing to defend me. It's my own fault. I dared sleep facing in and had to roll over to face out. Doesn't sound to difficult, right? Well, I am here to tell you I give it a "6" on the PD degree of difficulty scale. I won't bore you with the details so I will sum up with the statement "War with the sheets is hell".

How about an Emo Philips joke to ease the tension?

"I discovered my wife in bed with another man, and I was crushed. So I said, 'Get off me, you two!'"

Friday 21 November 2014

I Need a Pocketful of Posies!

On one forum, a newly diagnosed victim posed the question,"Does anyone know what natural remedies are available to treat PD?" or words to that effect. The answer is, of course, there are none. I know because during D-day (diagnosis day) plus one year, I tried them all and came to the generalized conclusion that the more natural remedies that are being pushed, the more likely the condition is incurable. In mathematical terms, there is a direct relationship between natural remedies and incurability. Sorry folks, in my opinion natural remedies for PD is the equivalent of snake oil for cancer. Use them if you must. They may do some good by distracting you from your predicament.

The future sounds bleak doesn't it? Incurable is an ugly word. Well greet the future with gusto because, I have come to believe there is an inverse relationship between optimism and the speed at which PD consumes us. As optimism increases, the speed of deterioration decreases. Think healthy and enter the future boldly. It's like chicken soup for a cold. Can't help. Can't hurt.

Beware of the dichotomy facing us. The belief in the efficacy of natural remedies and the notion that natural remedies are a scam, cannot live in the same mind at the same time. They cancel each other out. As a professor of mine used to say, "You can't suck and blow at the same time."

For PWP, the daily contest between optimistic thinking and pessimism can make our lives quite chaotic.

Who cares!

Chaos is great!

Monday 17 November 2014

Am I struggling to deny the obvious?

Sometimes I feel like I am on ski's in a snowless world. I can be quite naive about my problems vis-a-vis realty.

On the various PD forums I visit, I often find that the newly diagnosed are scared and can only see a bleak future for themselves. On the other hand, when I was diagnosed, my response when the neuro gave me the news was "Oh....hmm...what was that? My wife will want tI o know the details."

He looked over his glasses and repeated, "It is early stage parkinson's"

I think he must have thought me odd as I had no real reaction. I knew parkinson's was not good but somehow thought it wasn't all that bad.

I continue to remain upbeat in the face of a possibly devastating future. I just don't think it will be terrible. Perhaps I lack commonsense. Or, maybe I am in denial, but I don't think so. Only time will tell.

I know of one lady on a forum who has had the condition for 17 years and still leads a normal life. Seventeen years from now I will probably not have to worry about PD. Oddly, this lady and I are the same age (68) and our mothers died in the same year at the same age and we both kept our condition a secret from them so as not to ruin their last days.

But, I digress. I know PD is a designer disease and each victim is different. Some people get the condition at a very young age (eg. Michael J. Fox when he was 29 or 30). Others, are diagnosed at an appropriate age (me - 64). I want to tell the new PWP "It's not so bad" but that would only be my experience. Like I said - a designer disease. I got lucky. I think I would have had a different reaction to the neuro's diagnosis if I had early onset. I won't try to paint a rosy future because who knows how hard the disease will hit the newbies. I feel for those who were not so "lucky" as I was, but even for people who are newly diagnosed at whatever age, think positively. I believe that within my somewhat limited lifetime a drug or procedure will be discovered that severely slows the progression of PD or cures it altogether.

Nothing is incurable. It is just that we have yet to find the cure.

Wednesday 12 November 2014

An encounter with the family Cervidae.

One tried to attack me in the woods while I was jogging. I got away without a scratch. Another time, two of them jumped out of the bushes, side by side, at the level of my head. I tell you, another step, and I would have been road kill. Both incidents rattled me, but didn't stop me running in the forest. Parkinson's took care of that.

I am talking about deer.

I live in a city of close to 650,000 people, in an older part of town as opposed to the suburbs. On my morning walk, I travel about 5 kilometers using my trekking poles. I can really get moving using the poles in a nordic fashion. This morning, 5AM, I was "speeding" along whenI became aware of a feeling of falling forward. I needed a rest so I slowed to a standstill. Within a nanosecond of my stop, a large stag dashed in front of me, crossed a main artery (4 lanes), somehow missing the cars going in each direction, stopped, looked back with disdain, snapped his head and disappeared into the darkness.

If I hadn't stopped, I would have.....well, you know. Apparently, somebody is watching over me because that is now 3 times I have had a rendezvous with death at the hands of a 4 pronged hoodlum.

I think the deer are in cahoots with PD. They seem certain one of them will get me at some point. I think or rather, know, I am up to the battle, ergo, I don't worry about the future and I am sure my "insuciance is a nuiciance"* to them as they plan my demise.

Much is happening in the field of Parkinson's research so that condition, while somewhat irksome, is not overwhelming me. A cure is on its way. Sooner, not later. If not a cure,then good new drugs, now being tested, will slow the pace of deterioration in my brain.

Now if I could only do something about those deer.

  • I would live all my life in nonchalance and insouciance, Were it not for making a living, which is rather a nouciance.

Ogden Nash

Friday 7 November 2014

PARKINSON'S STEM CELL BREAKTHROUGH

stem cells can be used to heal the damage in the brain caused by Parkinson's disease, according to scientists in Sweden.

They said their study on rats heralded a "huge breakthrough" towards developing effective treatments.

There is no cure for the disease, but medication and brain stimulation can alleviate symptoms.

Parkinson's UK said there were many questions still to be answered before human trials could proceed.

The disease is caused by the loss of nerve cells in the brain that produce the chemical dopamine ,which helps to control mood and movement.

To simulate Parkinson's, Lund University researchers killed dopamine-producing neurons on one side of the rats' brains.

They then converted human embryonic stem cells into neurons that produced dopamine.

These were injected into the rats' brains, and the researchers found evidence that the damage was reversed.

There have been no human clinical trials of stem-cell-derived neurons, but the researchers said they could be ready for testing by 2017.

Malin Parmar, associate professor of developmental and regenerative neurobiology, said: "It's a huge breakthrough in the field [and] a stepping stone towards clinical trials."

A similar method has been tried in a limited number of patients.

It involved taking brain tissue from multiple aborted foetuses to heal the brain.

Clinical trials were abandoned after mixed results, but about a third of the patients had foetal brain cells that functioned for 25 years.

Using embryonic stem cells may be preferable, as it is easier to get hold of the large numbers of cells needed for transplant by growing them in the laboratory.

It also opens up the possibility of using less ethically charged sources of stem cells, such as those made from adult tissue.

The charity Parkinson's UK said the research "could be a stride towards clinical trials in people with Parkinson's".

Its director of research and development, Arthur Roach, said: "This important research is a key step along the way in helping us to understand how stem cells might shape future Parkinson's treatments

. "There are important potential advantages of these cells over the foetal-derived cells used in past cell transplantation work.

"This study could be a stride towards clinical trials in people with Parkinson's but there are still many questions that need to be answered before this development can be tested in people with the condition."
Colin Powell

Perpetual optimism is a force multiplier. Colin Powell

Saturday 1 November 2014

Conundrum

Just to make sure I was using the word "conundrum" correctly, I googled it and found two different definitions:

  • first definition:a confusing and difficult problem or question.
  • second definition: A riddle whose answer is or involves a pun or unexpected twist

I confess I didn't know the second definition but the first warrants further inquiry.

The only conundrum I intended to write about arose out of a thread in a parkinson's forum - ie - does the flu shot exacerbate PD symptoms. I doubt there is a definitive answer. PD is a designer disease. It differs from individual to individual. In my case, I would have to say yes, the flu shot had an effect on my symptoms. For two days following the shot, I felt more parky than I had in a long time. My balance was affected (not severely, but noticeably), as was my gait (parkinson's gait). Coincidence? Maybe. But, I think not. I have not googled to find out if there is a connection because

  1. Having had a very disturbing time with the flu a couple of years ago, any parky feeling is not even in the same class as the flu "bug". It took me 8 days to recover from the flu, and
  2. the parky feeling has left me now, so why bother.

You can find the thread at parkinsons.org.uk.

Now to definition #2. This is one I wrote 30 years ago, never realizing it was a conundrum;

A man has a dog that's a stray
It moves in a peculiar way
The dog has no legs
Do you think the dog begs
To go for a drag every day?

That's it for today.