You have a good head on your shoulders. Why not keep it?

We had dinner with a couple of old friends last night. I will call them Dwt. and his wife, Cdt. Cdt's father was a professional football player a few decades ago, as an offensive lineman with the defunct All America Football Conference's Los Angeles Dons and the Winnipeg Blue Bombers having refused an offer from the Pittsburgh Steelers. He became famous in Canada and I considered him a friend. He was a true southern gentleman (Texas) with a quiet demeanor and a quick wit. So it was with sadness that I learned of his death in 2011. He died with dementia which his daughter attributes to football. Twelve years as a pro, putting his body and brain on the line for the game.

The problem became public again when 24 year old rookie linebacker, Chris Borland, left a highly paid gig with the San Francisco 49ers. He had 2 concussions up to then and he was aware of football players suffering from degenerative brain problems and he didn't want that future.

"I just thought to myself, 'What am I doing? Is this how I'm going to live my adult life, banging my head, especially with what I've learned and knew about the dangers?'"

I wondered if banging your head might lead to parkinson's but I only found a small study that couldn't confidently find a connection between parkinson's and head injury. It did find a positive correlation between head bangs and ALS and Alzheimers. Having had a few bad head knocks my self in boxing, football and hockey, I think if there is a connection with the other degenerative diseases, why not parkinson's?

I am not alone in my opinion. Former Blackhawks player, Steve Ludzik was diagnosed at age 39 when he was the coach of Tampa Bay (hockey). He believes there is a connection:

“You sit in a dressing room and the guys, if you have a good team, you’re a brother,” Ludzik said. “It’s not good enough to say, ‘I’m hurt.’ You get hurt some nights and you just play. That’s the mentality that you grow up with throughout your career. You’re pressured. But it’s just part of the code.” Ludzik, 54, suffers from Parkinson’s. He attributed the disease to the many head injuries he suffered in his playing days and believes he’s not the only one that’s suffering post-retirement. “I think you’re going to see Parkinson’s disease and neurological damage to a lot of players,” he said. It comes out later in life. Mine came out early.”

Of course, that is just one other proponent but I am certain we are not alone. Chris Borland made a sensible decision about football, an inherently violent sport. After watching the hockey playoff race, I believe hockey is too violent and the league should bring in more comprehensive rules or harsher penalties for violating current rules. If they don't..........

Statistically, no connection has been discovered between head injury and parkinson's but as somebody once said, statistics is the art of producing unreliable facts from reliable information.

Hockey---->High sticking, slashing, tripping, spearing, charging, hooking, fighting, interference, roughing - that's hockey. The rest is just figure skating."

A Placebo is a pretend cure that works!

Placebo effect: AKA the placebo response. An interesting phenomenon in which a placebo -- a fake treatment - for example as when a patient is given a sugar pill, expecting it to be medication and remarkably, it improves that patient's condition due to the expectation the person has that it will be be of some use in improving his condition.

PWP search for potions or miracles to stem the PD tide, without success. A couple of years ago, I came upon this:

The latest studyappeared in this week’s edition of the journal Neurology. Postuma and colleagues randomized 61 patients with Parkinson’s disease to caffeine or alternatively to a placebo. The investigators aimed to improve sleepiness, but caffeine failed to keep subjects more awake. However, on the UPDRS Parkinson’s disease motor scale, patients who received caffeine had an approximate 5 point improvement. The caffeine study was only performed for six weeks, the sample was extremely small, and it was hard to blind who got caffeine and who did not. The results should therefore be interpreted with caution, and will need to be replicated in a much larger study, presumably using a primary motor outcome.

Ya Right. Apparently people who drown in coffee have a smaller chance of developing PD. I am out of luck. I don't drink coffee. I tried in university because everyone else seemed to enjoy it and the chances of meeting a lady increased.

"Would you like to join me for a coffee?" You hear that a lot in colleges. I couldn't use that line. How could I invite a woman out for coffee and then I drink milk while she downs the caffeine? Consequently, my social life in college was beer driven and it wasn't very successful. Who wants a drunk when there are coffee drinkers available!

So I tried but I gave up. I confess I detest that foul liquid - taste, smell, viscosity - everything about it. I was not going to be cured by caffeine. The quote only semi-interested me. The sample was too small and the duration too short to impress me. Thus it is ironic that I have been chosen to be a subject in a project to test the effects of caffeine on parkinson's. The sample will be huge and the duration long (5.5 years) enough that the findings will be significant. Plus, they have assured me that

• I will not have to drink coffee
• the caffeine will be in the form of a pill
• the caffeine will not keep me up at night
• there is no taste or odor to the pill, and finally,
• it won't take up too much time

OK THEN, COUNT ME IN!

Of course, half the participants will be taking a placebo. I doubt the placebo effect will affect me if I get a placebo and if I do, I hope it is not sugar. I like being almost thin. Imagine if I went through 5.5 years taking a placebo and got fat without any benefit while the caffeine pill poppers improved! Whooooo - would I be bitter!

Ah well, anything for science. Am I a lucky guy or an idiot? Will it make me less shaky or obese. Probably neither. That is the reality. No cure..again. Plato said something about the sciences simply being perception and we all know perception is not reality, but I do consider myself fortunate to live in another world, while keeping a summer house in reality.

Ergo, I will be their guinea pig and take the pill while clinging to the hope that what I pessimistically perceive to be the most likely outcome is not really reality. It is a dreamer's perception. Don't you know, only dreams are real. You know what I mean? Reality? Dreams?

Shoot....never mind; it is time for my afternoon nap.

The art of medicine consists in amusing the patient while nature cures the disease.

Wouldn't it be nice if Voltaire was right - all we have to do is wait for nature to cure us. Unfortunately, that is not the case for PWP. This "disease" is incurable - to date any way. Some real progress and promise is being made by people researching the vaccine approach (see "Foxfeed Blog" for March 20th), so there is hope, right?

I had Voltaire's words in mind when I went to see my neuro today. He asked how I was doing. I said "fine".

Now what is a doctor supposed to say when the patient is "fine"?

Silence reigned.

He looked at his computer and asked a couple of questions about medicine and side effects. "None," was my reply.

Stymied.

He looked ill at ease. If he had had a speech bubble above his head, like in the comics, it would have read, "Fine! Fine! None! Now what!"

Don't get me wrong. He is a good man and good doctor. There was just nothing more to say. He asked me about falling. I told him I had had another fall in South Beach but that I had walked about 17,000 steps each day.

Topic change.

"Well, I only average about 4,000 a day," he said and added, "we put a fitbit on my young son to see what exercise he was getting in school. He was up to 17,000."

Very Interesting. I would not have guessed that many.

We chatted about that for a minute or so and then my wife asked him about a research study concerning the effect of caffeine upon PD. I volunteered. I qualified because I had PD (obviously), was the right age (although closer to the upper limit than the lower) and I never drink coffee and not enough Coke to rule me out. He is putting my name forth. We will see.

Anyway, I think Voltaire was mistaken. The art of medicine consists of the patient keeping the doctor amused until...Well...until the victim has some new symptoms or until somebody, somewhere, cures the disease.

I left feeling pretty good. Four years past diagnosis and my neurologist and I have nothing to talk about.

Sleeping is no mean art: for its sake one must stay awake all day. ~Friedrich Nietzsche

Sleep, a little slice of death. How I wish I had more of it.

Dopadoc's list of the 10 non motor functions that might indicate PD, rates EDS (exessive daytime sleepiness) as the number one, non tremor, symptom that might indicate parkinson's.

As I wrote this, I was yawning and it is only 10:30AM. I have the flexibility to take an afternoon nap which I enjoy (yawn again), but they don't do much for my exhaustion or my RBD (Rem Behavior Disorder), that little annoying tick that seems to wake me up every night.

RBD is characterized by the acting out of dreams that are vivid, intense,and sometimes violent.

Watch Dopadoc's "campy" little video that does a great job of explaining these non-physical symptoms. It really is worth the time spent watching.

Ah sleep, at one time a nectar that cured the ills of the day is now just a mystery that other people talk about.

It is coming up to 3:30 AM the next day and I have had about 3 hours of sleep in the last 24 hours. Thank God for Netflix, the ipad and the nap I am hoping to have this afternoon.

It's been a hard day's night (and day)

Dreams - The only dreams I have that I remember are very vivid and can be quite scary but at least they scare only one person - me. However, there is a corollary to that statement. My dreams only scare me until they become ultra-vivid.

I was watching TV prior to going to sleep and on the program a brutal interrogator got angry and sswept all of the pieces off a chess board. Well, in my dream I was that interrogator and my arm lashed out sweeping my radio onto the floor and the noise startled both me and my wife.

In the morning, when the topic arose, I detailed the circumstances surrounding my uncontrolled reason for tossing my radio across the room.

"I hope", she said, "That you don't dream about killing your wife!"

We laughed at that, but later, in the silence of my office, I began to fear that possibility. The dreams of PWP are so real...well, you know.

I am working too hard. One project had me working 20 hours over the past 3 days. Not so bad, you might say and I would agree, if it were not for the fact that I should be retired or at least making an attempt to keep my goal of a maximum of 7 work hours a week.

It is not that I get tired. I am way beyond tired by supper. I am totally wiped out, exhausted. When I work, I focus strictly on what I am doing and consequently, I forget to take my medication until my leg starts to wobble and by then, I am 12 hours late for my second of four doses for the day. The result is a rather boring blog entry that may or may not have unintended double strikes of a letter when my little finger takes on a life of its own.

I am getting tired of myself. Perhaps I should be someone else.

Who knew

1. Baby seal lions cover themselves with sand to protect them from the sun. Seals are probably not susceptible to parkinson's, they are just a little smarter than some of us.

2. Only swimming is better for the body than nordic walking. With the help of the poles, the body is propelled forward, resulting in a full body workout. Nordic walking requires the use of 90% of your body's muscles. It strengthens your back muscles, trains your core and tones and shapes your body.

Nordic walking is popular in Scandinavian countries where nordic (cross-country)skiers use the technique to keep in shape during the summer.

Get some poles. They are not expensive and use them 3 or 4 times per week. I guarantee the exercise you get from their use will be beneficial to your parkinson's. It is a low impact "speed" walk that burns 40% more calories than normal walking.

3. While on the roller coaster of a boat ride heading out to sea for deep sea fishing, I felt that the boat was rolling so much, we might capsize. The next thought that entered by weak mind was "Sharks". Back in the condo, I googled sharks and learned that sharks bite roughly 70 people each year worldwide, with perhaps 6-10 fatalities. Although shark bites get a lot of attention, this is far less than the number of people injured each year by elephants, bees, crocodiles, lightning or many other natural dangers.

Small comfort to a person in the water who doesn't know what lies beneath. But, swimming is a good exercise for PWP and swimming pools are usually devoid of sharks, elephants, bees and crocodiles.

PS thanks to Gale for the information and picture of the baby seals.

Fishing - a form of loafing around

We went deep sea fishing today and to quote George Costanza, "the sea was angry that day, my friend". The fishing boat bounced around like a cork in a whirlpool. One poor fellow paid his $50 and was sick before we left the harbour. He only came out on the deck once, to cast his stomach contents into the ocean. There are cheaper and more liquid ways of achieving the same result. No fish for him.

I had one on the hook but it got away. It must have been a "big one" as the reel screeched and started running out to sea. Frankly, I am glad I lost it. It would have required standing to land it. For a PwP, that would be the equivalent of standing on a mechanical bucking bull, difficult? Nay, impossible and probably embarrassing. My wife caught two, a tuna and a kingfish, both nice sizes. That was fun to watch. It is amazing how limiting PD can be. Simple things you never gave a second thought to in your "real life" now present obstacles. Still, I can live vicariously through her.

So, my deep sea adventure did not live up to my expectations. I was off balance, cool and a little wet. But, look on the bright side, I was better off than my bait.

This little rant is not really about fishing, it is about sun burn. Just another warning. We all know what sunburn looks like. I consider myself an expert on the subject, having suffered several severe burns in my youth. If I had known what I know now, well, you know.

"SUNBURN describes red, sometimes swollen and painful skin, caused by overexposure to ultraviolet (UV) rays from the sun. Sunburn can vary from mild to severe. The extent depends on skin type and amount of exposure to the sun. Sunburn is a serious risk factor for skin cancer and for sun damage.

In a more in depth definition, sunburn is a reaction of the body to the direct DNA damage which can result from the excitation of DNA by UV-B light. The damage is recognized by the body, which then triggers several defense mechanisms, including DNA repair to revert the damage and increased melanin production to prevent future damage.

Melanin transforms UV-photons quickly into harmless amounts of heat without generating free radicals, and is therefore an excellent photoprotectant against direct and indirect DNA damage. "

Read more here.

Scary stuff, isn't it? Skin cells are damaged which triggers an immune system response from the body. White blood cells, our defense experts, recognize the sun damage as a danger to our well-being and launch an offensive to remove the dead and dying skin cells, causing the skin to peel. We all have enjoyed seeing who could peel off the largest piece of dead skin. I often won but, if I knew then what I know now, well, you know.

And persons with parkinson's have a four fold greater chance of developing malignant melanoma as a result of serious sunburns. Isn't that just the "cat's meow!"

What has this got to do with deep sea fishing? Not much except the sky was fully clouded, the temperature was lower than expected and yet, because of my skin doctor's warning that "UV rays can penetrate clouds and cause sun damage" I wore SPF 50 sunblock and while being tossed around on that fishing trip I wondered, have I closed the barn door after the horses have escaped?

POSTSCRIPT: Again from Gale: I got THE worst sunburn in my life laying on the beach at… South Beach. It was a cloudy day, I thought I was safe, but my burn was so bad my face, arms, and legs were 3 times their normal size and I had seeping blisters all over my face, arms, and legs. It was in this condition, a couple of days later, that I sought respite from the outdoors in a bookstore in Boca Raton where I ran into Delta Burke (of Designing Women) fame who simply took one look at me and said “Oh, dear.” Then she directed me to an aloe vera product that gave me some relief. I still have the bottle, although it has long since expired as an unnecessary reminder to stay out of the sun. And I have to this day. If I must go outdoors, I am accompanied by 10 umbrella bearing sherpas. Normally I stick with agoraphobia, though.

Stand up tanning - How do you plead?

My vacation usually results in a sunburn - a very expensive sunburn, especially with the dollar at 79 cents vs the greenback. This year, I liberally smeared myself with sunscreen to avoid a burn. Why? Because my wife and dermatologist told me to do so.....Then.....I got added impetus when I read the following

SYDNEY, Australia — A new study suggests that patients with Parkinson's disease (PD) have about a 4-fold increased risk for development of malignant melanoma, underscoring the importance of dermatologic screening in PD, the researchers say.

Radu Constantinescu, MD, from the University of Rochester Medical Center in New York, presented the study here June 18 at the Movement Disorder Society (MDS) 17th International Congress of Parkinson's Disease and Movement Disorders.

Prior studies have shown that the overall risk for cancer in patients with PD is lower but the risk for malignant melanoma is higher compared with the general population.

This is no myth. It is time to bathe in sunscreen. My dermatolgist told me

• use spf of greater than 50
• best if there is zinc in it
• wear long sleeved shirts
• wear a hat
• don't be seduced by shade, the UV rays reflect off of surfaces onto your body
• if you go into the water, reapply when you get out
• reapply every few hours
• use creams rather than oils or spray ons
• remember, only mad dogs and Englishmen go out in the midday sun.

Unfortunately, this morning, during an hour walk in bright sunlight, I neglected to apply my sunscreen (spf 18)but I did not burn; rather, I came down with a smooth, pre-cancerous shade of brown with the possibility of facial cracks and alligator skin.

If, like George Hamilton IV, you like to tan, you should read the following

1. There is no such thing as a safe tan. The increase in skin pigment, called melanin, which causes the tan color change in your skin is a sign of damage.
2. Once skin is exposed to UV radiation, it increases the production of melanin in an attempt to protect the skin from further damage. Melanin is the same pigment that colors your hair, eyes, and skin. The increase in melanin may cause your skin tone to darken over the next 48 hours.
3. Skin tones that are capable of developing a tan, typically skin types II through V, will probably darken in tone within two days.
4. Evidence suggests that tanning greatly increases your risk of developing skin cancer. And, contrary to popular belief, getting a tan will not protect your skin from sunburn or other skin damage. The extra melanin in tanned skin provides a Sun Protection Factor (SPF) of about 2 to 4; far below the minimum recommended SPF of 15.

Exposure to the sun can also cause premature aging.
1. Sometimes referred to as “photoaging,” premature aging is the result of unprotected UV exposure. It takes the form of leathery, wrinkled skin, and dark spots.
2. Although the causes of premature aging are not always clear, unprotected exposure to harmful UV rays break down the collagen and elastin fibers in healthy young skin, and cause wrinkles and loosened folds. Frequent sunburns or hours spent tanning can result in a permanent darkening of the skin, dark spots, and a leathery texture.
3. Symptoms:
   • Wrinkles
   Dark spots
   • Leathery skin
4. Premature aging is a long-term side effect of UV exposure, meaning it may not show on your skin until many years after you have had a sunburn or suntan. Avoiding UV exposure is essential to maintaining healthy skin.

Read more here

What is my conclusion - Stay out of the sun or use a liberal dose of sun screen idiot. Who needs malignant melanoma? Who needs to be cool shade of brown while lying in your grave.

The juice is definitely not worth the squeeze.

PS - I think George Hamilton IV has died but his famous tan was not the reason - rather, heart problems.

Postscript ---- I have just been informed by my good friend, Gale, that "George Hamilton IV (the country singer) did indeed die of heart problems, but George Hamilton (the actor) and famous suntanner is still alive and well (and tanned).

There are symptoms that never show on the body that are more bothersome than any bleeding wound. These are the hidden symptoms of PD

No humor is found in this post, well maybe some. this is just information for people who wonder if they have PD. I have explored some of the hidden symptoms that should give you pause.

1. unusual anxiety - do you find you get anxious over small matters that would not bothered you before?
2. weepiness- do you get emotional over the silliest things, like Jennifer Aniston's breakup with Vince Vaughn in that movie, The Breakup - hardly a tear jerker but you still get a little chocked up.
3. Do you find yourself to be unbelievably constipated for days on end
4. How about your sex life? Erectile disfuntion? Loss of libido? Enough said.
5. Are you depressed? You don't want to get out of bed and you really don't care about anything?
6. Do you sweat alot even though you have not worked out for ages?
7. Do you find yourself making several trips to the bathroom to urinate? An unusual number for you.
8. Maybe you have a tremor, maybe you don't.
9. How about muscle cramps, first an inordinate number of foot cramps then leg cramps that bring tears to your eyes?
10. Does your body feel weak in your hands and legs?
11. Are you stiff most of the time?
12. Do your arms swing naturally of do one or both hang by your side when you walk?
13. Do you slur your words with an overabundance of saliva?
14. Can people hear you when you speak?

You don't need to have all of the above to have parkinson's, but these are just some of the symptoms of the condition. When people have tremors and shaking hands, they will seek out medical help but many of the symptoms of PD are hidden; however they are symptoms none-the-less and need to be checked out. Get yourself checked out by a neurologist.

Will you put off seeking medical help because:

1. You have no tremor which is the only symptom of the shaking palsy? (PD). That's a myth. According to the experts, the real symptoms are anxiety, depression, sweating, erectile dysfunction and bladder problems.
2. Only old people get PD, nope, another myth. The disease strikes between 5 and 10% of people under 40. The youngest known victim was 3 years old.
3. If you develop PD, it will eventually kill you. Myth. Without a cure, you will die with PD but it won't kill you.
4. You are going to end up in a wheel chair. Quite possible but know this, in most cases the progression of the disease is slow. It took 30 years for Mohammed Ali to be chaired.
5. There is no cure for PD. Unfortunately true. But, drugs can alleviate the symptoms to allow you to lead a fairly normal life for a decade or three and advances in research are leading to a cure ....soon...so hang in there

Blow on Them Ram Horns, Joshua Cried

Of course we all remember the song "Joshua Fit the Battle of Jericho" when Joshua made "the walls come a tumbling down" by making noise when the "lamb ram sheep horns began to blow...etc."

It must have been very noisy!

God knows, I know that noise. It is the noise I make when my right foot drags itself along the ground when I am walking, even with trekking poles. Now I know that is a bit of an exaggeration, but I hear every dragstep. They echo in my brain and I wonder why people don't stare at me; afterall, I feel like a freak in the land where freaks and outcasts thrive. Maybe they don't hear the scraaaaapppeee, or maybe I can't match the freakiness of the guy in the Santa Clause suit or the crazy lady who shouts about relationships. Maybe I am not as loud as I think I am. Yes, maybe my scraping foot and trekking poles, although different, are not unique in the Freaks Catalogue. I have to accept my position as just an ordinary and somewhat paranoid freak with a hearing disorder.

I am leaving for my walk and I hope my dragging foot does not get too noisy. I wouldn't want any walls to come tumbling down.

River running free, you know how I feel

I am averaging about 17,000 steps down here and I am feeling good. All of the symptoms of PD are caged by the drugs and a new dawn and a new day. Heat, and I mean real heat, seems to have a beneficial effect; and while I use my trekking poles to achieve some speed, I can take walks without them. With the poles, I am unable to pass even the slowest jogger but I pass walkers as if they are standing still.

I went to a basketball game, Miami Heat v. Phoenix Suns. The Heat won easily. My old friend who took me to the game appears to be in the early stages of PD. The question is, why both of us. Is it a coincidence that we spent 7 years together in a school that I once described as a "sick" school. Many of the teachers who taught with us ended up with problems, 4 died far too early, 2 were diagnosed with Fibromyalgia, one with a form of cancer (survived),one with Chronic Fatique and now 2 of us with PD.

Coincidence - Probably. But it gives you something to think about.

In the meantime,my old world is a new world and I am feeling good.

Stars when you shine
You know how I feel
Scent of the pine
You know how I feel
Oh freedom is mine
And I know how I feel
It's a new dawn
It's a new day
It's a new life

And I'm feeling good

Two hours later, I got a little cocky and had a fall. One scraped knee and one bruised hand.