Dylan Thomas speaks to me

I saw a possible future yesterday. While I was sitting in the waiting room, a older fellow was wheeled in by his wife with his son in tow. I am not sure of his age. I am no good at guessing ages but he must have been over 75. What I noticed most were his hands. Both were in uncontrollable rages. I have had a tremor but his was the mother of all tremors. Maybe the medication didn't work so well or not at all. I felt so sorry.....not for him....for me. If that is to be my end game I will....................

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

I am gathering my forces and intend to lead them into war. I started back on the treadmill today, against doctor's orders.

Placebos and the Big Brag Theory

I started practising my voice therapy, occasionally. I sound like Felix Unger. If you remember "The Odd Couple" with Tony Randall playing Felix, you will know that special sound. It will only get worse when I begin anew the therapy with the therapist. I plan to devote myself to correcting my voice.

They cancelled the research project in which I was one of many guinea pigs. They were looking for a connection between caffeine and the rate of progress of PD. After 1.5 years, they concluded there was no difference between the control and placebo groups. I was certain I was in the control group because I didn't seem to get any worse over the year and a half. Surprise, surprise. It turns out I was in the placebo group. I should have known because caffeine has a negative effect on me and I wasn't getting a hit from the pills I was taking,

Was I a victim of the placebo effect or do I suffer from a lack of scepticism? I think a placebo, prescribed by a serious, caring physician, to an accepting patient, can accomplish as much as real meds. The placebo is no longer a placebo if the patient believes in its efficacy, it becomes a remedy and can lead to a cure (or a slowing of progress in PD).

That is what I believe. I was convinced PD was slowing down. If they had never told me I was on the placebo, the rate of my PD might have slowed considerably.

But then I also believe the universe has always existed and will always exist. No beginning and no end. Just change. I admit I might be wrong on that count. But that is an entry for another day.

A spoonful of sugar helps the medicine go down....

Today I am emitting positive vibes. Although I have not encountered it, I know that depression often occurs in PWP. Let's look at some positives for those PWP who are living under a shroud:

• If the container says, shake well before using, we are able to obey and complete the task in record time, thereby reaping maximum benefits from the product.
• If you want to learn to play the snare drum, you are halfway there with your stacatto hand.
• Oh yeah, if you have a baby in the family and he needs burping, tell the mother that nobody can burb the child better than you.
• Remember your youth when you would put your thumb over the opening of a bottle of pop, shake it up, and then spray your friend? Well now you can relive your youth and the spray will go twice as far as it did in the past.
• You don't have to smile at stupid jokes. Just explain that while you saw the humor in the joke, it is quite impossible for you to smile. You can gather some sympathy by explaining...."You know - inability to smile is one of Parkinson's arsenal of weapons"
• You are not dead, you only think you are. Some days anyway. Well perk up, your tremor reminds you that you are alive and trembling. The citizens without PD will never enjoy that gift. Just keep in mind "I tremble; therefor, I am."

Can you think of any others?

Go HERE for an interesting slide show About PD.

"Roll over, Roll over. So they all rolled over and one fell out....."

Today's Report

1. I get my stitches out tomorrow (I had surgery to remove a basil cell carcinoma) and I am sure that by next week, I shall be back to the treadmill and lifting weights. To bide the time, I have used my stationary bike and have taken long walks. It will be nice to get back to sweating; that's when the real "healing" will restart..
2. I met with my speech therapist. I took the course, LSVT LOUD, in 2011 but I didn't take it seriously. The therapist who is training me was receptive to me retaking the 16 sessions involved. I was very thankful that she didn't tell me to get lost after ignoring her teachings the last time. One problem though; I have to go back to the doctor to get my vocal cords checked. You remember, that is when the doctor just puts this snake-like thing "up your nose, down to your vocal cords. I must admit, it wasn't all that bad the last time but I still can't say I am looking forward to that violation. It's all for the better, I am told, usually by people who have never had to have the procedure!

It's just another of the little joys of PD. Let's admit it, we have to play the cards we've been dealt and live the life we have been given, with grace, warts and all.

Screw that! Screw PD. Screw grace. I intend to do everything I can when playing my cards, including cheating. It is all part of my jihad against PD. Speech therapy is just the beginning.

All the world's a stage - Warning: Don't read if you are easily depressed

We all want to know how much time we have left before we lose our independence. The fact is.....nobody knows.

Two doctors, Hoehn and Yahr, developed a scale that divides the progression of PD into five states which are:

1. Stage one - mild impairment, does not interfere with daily life, medication controls symptoms which are usually on one side of the body only.
2. Stage two - moderate impairment, typically symptoms are on both sides of the body. May have some balance issues and other issues might arise such as masking (loss of facial expression), problems with swallowing and talking.
3. Stage three - symptoms are present along with loss of balance. Falls are not uncommon. Still independent and drugs still can control the symptoms or reduce their severity.
4. stage four - Independence is waning. Might require a walker. Should not live alone because of falls.
5. Stage five - the final stage, hallucinations, falls, freezing, around the clock care, wheelchair. Bad news isn't it? But, if you are like me, you just figure you will never get that far.

By the way, nobody can predict how long each stage will last. It will vary from person to person.

You didn't heed my warning, did you. Now you are depressed. Well 2 things to think about - MJF and Muhammad Ali - both have lasted 2 or so decades with semi-normal lives.

Some doctors don't like this method of describing PD because it focuses on movement and, as we can attest to, PD is so much more. These doctors use the Unified Parkinson's Disease Rating Scale. It is too long to replicate in this blog, but you can find it HERE

If a word in the dictionary were misspelled, how would we know? Steven Wright

Confucius say: "To know what you know and what you do not know, that is true knowledge." With that in mind, I offer this dictionary, written by stream of consciousness rather than alphabetically, of things you know or don't know.

• Parkinson's - a disease or condition that screws us (PWP) up by meddling with that part of the brain called the substantia nigra.
• substantia nigra - the dopamine factory that is continuously on strike for PWP.
• Dopamine - a chemical produced by the substantia nigra; dopamine helps to transmit instructions from the brain to other parts of the body. Unfortunately, for PWP, 80% of the dopamine cells have taken a holiday when we experience our first symptoms and this dopamine deficit means we gradually lose control of our movements. To date we can't stop the depletion of dopamine.
• Parkinsonian - a condition(s), the symptoms of which mimic the symptoms of PD, often caused by the use of drugs. It is sometimes used, incorrectly I think, as a synonym for PD
• idiopathic parkinson's - the type most of us have.
• Idiopathic - means "no known cause". I doubt that it means the obvious "pathetic idiot".
• Tremor - shaking in the hand or foot on one side of the body, will often spread to the other side. A better definition is "damned nuisance", especially when keyboarding.
• natural remedies for PD - are non-existent except for mucuna pruriens but that doesn't do much. So for now, stay away from naturopaths who tell you they can control the symptoms and you don't need drugs. Maybe next year a natural remedy will be discovered. In the meantime, only snake oil salesmen will tell you they can help.
• multiple system atrophy - don't worry, this is a rare (2 -3/100,000) condition, but it has similar symptoms to PD. I refer to it as PD+ or PD on steroids. Sufferers have problems with swallowing, digestion, blood pressure, heart rate, erectile dysfunction, fainting spells, tremor, etc, etc atrophy of all systems. It is difficult to diagnose because of its PD-like disguise. It moves quickly and death usually results in less than 10 years from dx.
• Lewy body dimentia - this is a scary one. It is characterized by a general decline in cognitive ability along with PD symptoms. It is like a combination of PD and alzheimer's.
• Levodopa (L-dopa)- a drug that converts to dopamine in the brain. It is usually taken orally and crosses the blood-brain barrier where it is converted to dopamine.
• Levadopa-carbidopa (sinemet) - 2 drugs combined. Carbidopa works to stop the levadopa breaking down before it crosses the blood-brain barrier.
• dopomine agonist - a drug that mimics the effect of dopamine. There are several DA's but the most common is pramipexol (Mirapex - same thing but easier to pronounce).

These drugs can have insidious side effects such as

• Excessive daytime sleepiness (got it)
• Visual hallucinations (nope, or maybe I might have some every so often, like mirages in the old desert movies.)
• Confusion (nope)
• Swelling of the ankles (got it)
• Dyskinesia (not as common as other side effects)(nope, no uncontrolled movements here)
• Compulsive behaviors (such as compulsive shopping, gambling, eating, and excessive sexuality)

Some of these compulsions sound like fun, but they are dangerous so don't take them lightly. Luckily, I don't have any, especially the last one -- rats!)

These are just a few PD buzzwords. There are many, many more. Alexander Haig once said "The warning message we sent to the Russians was a calculated ambiguity that would be clearly understood."

Have I achieved that goal?

Essential Tremor - whatizit?

It's a voting day today. I went to cast my vote but showed up a half hour early. The officials asked me to sit and wait and I overheard them talking about a voter yesterday (advance polls) whose hand was shaking so much, she had to get someone to mark her ballot. Apparently she suffered) from essential tremor.

I had never heard of ET until a reader told me he was a victim and so began my reading.

ET is the most common movement disorder, the cause of which is not yet known. It is characterized by

1. shaking that cannot be controlled
   
2. What I call "a wobbly head"
   
3. A reverberation in your voice.
   
4. Tremors are worse when you are under stress or are using your hands (eg to lift a glass f water to your mouth.
5. Severity of symptoms increases with age.
6. It can start in adolescence but usually hits people over 50.

ET is sometimes misdiagnosed as PD (and vice versa). But there are differences. The tremor in our hands for example, arrives when our hands are at rest. In the ET tribe, the tremor starts when they put their hands to work. There are several drugs that lessen the severity of the tremor with DBS for those who the drugs don't help.

ET is just another brain disease for the researchers to work on in their search for a cure. It is beyond my comprehension how they can navigate their thinking through the most complicated instrument in the universe .... the brain. I say thank you and please, don't give up. There is a cure for all types of degenerative brain disorders and someone's going to find them, so it might as well be you. Hang in there.

I don't want to sound greedy...NAAH....Truth is I don't care how I sound. Just bring PD to the front of the line.