A little bit of sugar helps the medicine go down

I had breakfast with an old friend yesterday. He is one of those interesting people who tells interesting stories about interesting, albeit, eccentric topics, usually concerning his family. I still chuckle to myself at the time he solved his oldest daughter's impertinence when she asserted herself by shouting and slamming her bedroom door. My friend solved that problem by removing the door.

Stories like that. They come out of left field. They are particularly humorous and he is able to laugh at himself and the image he must have presented, for example, when driving to the lake and insistently telling his children in the back seat of his old truck to stop whatever it was they were doing. When he was unsuccessful, he stopped the truck and proceeded to attempt to rip off the locked rear door in order to deal with his kids, much to their amusement.

He has slowed down now, as he should have for he is 70 and dealing with diabetes II and other physical problems. Sometimes I am glad that I only have PD as my struggle.

We must have made quite a show for the other patrons of the restaurant. He is pretty much deaf and my voice is like the voice of the low talking woman in the Seinfeld show. The discussion was peppered with "what's that again", "pardon" "what did you say?", etc. Still it was good seeing him. He still has the ability to make me laugh with his comments about his hearing problem and my speaking voice, or lack thereof. He is not perfect, but that's what makes him perfect.

The good thing about this meeting was my ability to converse without my word finding disability. When I am completely at ease, my disability is not present. Why does the problem disappear when I am not feeling rushed or I am not in a teaching or scholarly mode? I found the following inThe Journal of Parkinson's disease, March 18, 2017:

“Around 70 per cent of people with Parkinson’s have problems with speech and communication, which can really impact their quality of life.

“Researchers and clinicians have in the past focused on the physical problems patients have with making their speech clear. But patients themselves say the problems are more complex and are more to do with cognitive impairment – for example not being able to think quickly enough to keep up with conversations or not being able to find the right words.

“They say that this has the biggest impact on their ability to communicate in everyday life. “We wanted to really prioritise the problems that patients experience – and to find out whether it is clarity of speech, or these more cognitive issues, that have the most impact on everyday communication.”

The research team undertook the first systematic review to look at whether cognitive issues or physical speech problems create the biggest barriers to communication. They sifted through nearly 5,000 studies in search of helpful data, and found 12 relevant studies involving 222 patients.

They found that both cognitive status and physical speech problems are associated with everyday communication problems among people with Parkinson’s. However patients who had greater cognitive difficulties, had more problems communicating.

And while patients with less clear speech also had trouble communicating, this factor had less of an impact on everyday communication."

Cognitively, I think I am fine. It must be some other factor causing my problem. Interesting. You can read more at http://www.journalofparkinsonsdisease.com/slow-thinking-conversation-stopper-people-parkinsons. But, in the meantime, pick low stress situations in which to converse. Your conversation will flow and you might find out you are an "interesting" person too. You have waited too long to unleash those interesting stories that you have secreted away because PD often made you sound stupid whenever you opened you mouth but, in the words of Ralph Waldo Emerson,

"It is one of the blessings of old friends that you can afford to be stupid with them.

I look forward to our next meeting.

Eat what you don't like to maintain your health. Sure!

J'ai mal a la dos. Really bad! I decided I should see a chiropractor even though I don't believe in much of the claims they make. I found one on the internet and got in right away. He seemed to know what he is doing. He used a couple of programs to map my back, shoulders and neck and those programs were very accurate in showing where the muscles are in distress. He is a very talkative, likeable guy and he helped, a bit, so I will see him again; although, at times I felt like George Costanza in that episode with the healer whose remedy turns George purple.

Anyway, he gave me dietary advice which really amounted to "don't eat anything that tastes good".

With that in mind I turned to the web. Here is what I found:

• nothing you eat will in any way cure PD
• eat healthy
• Certain foods can relieve some of the symptoms, for example eating fruits may help with easing constipation
• eat foods high in antioxidants
• 6 - 8 ounces of water each day to stay hydrated
• If you have swallowing problems, eat smaller portions, chew well and drink up
• eating yellow mustard can ease cramps
• if you are on L-dopa, don't bother with fava beans (thank God!) or mecuna puriens. Although both contain levodopa, there is no way of telling what concentrations of the drug are present in them and, like other supplements, they won't do you much good
• take medication on an empty stomach, 30 minutes prior to eating or 60 minutes after
• avoid eating proteins while taking L-dopa. Protein can reduce the effectiveness of levodopa.

That is it in a nutshell. Eat a balanced meal, even the stuff that tastes good.

One last dollop of advice: being healthy is the slowest way to die!

Pop goes the weasel

I will admit I am a bit of a hypochondriac when it comes to PD. I have to be logical and not attribute every little pain to parkinson's.

Well, that's not going to happen! I am too involved with the condition. For example, check out these symptoms:

1. stiffness - I seem to be stiff all the time, especially my lower back
2. My lower back can be quite painful at times.
3. leg muscle cramps are making more frequent visits
4. I am slow - my god, I move at a turtle's speed
5. I have lost confidence in my ability to walk more than a half mile without feeling dizzy

   WHAT'S HAPPENING?

   I turn to the internet for answers and find from Western Australia Parkinson's the following:

   1. In the beginning
      When you first start taking levodopa, you feel a noticeable improvement in your Parkinson’s symptoms that is maintained throughout the day. Your medicine effectively tops up dopamine levels within your brain for several hours, so most people get effective symptom control with three doses per day.
   2. Why things change
      Parkinson’s is a slowly progressive condition, so the symptoms you experience will change and evolve over time. The dopamine level in your brain gradually declines, which makes it harder for each dose of levodopa to prevent symptoms re-emerging. Doses of levodopa are effective for a shorter time. When this happens, most people start to experience fluctuations in symptom control throughout the day.
   3. What is wearing-off?
      Wearing-off is the term used when the effects of levodopa ‘wear off’ or diminish before it is time for the next dose. Symptoms of Parkinson’s return or worsen before your next dose of levodopa is due, and improve after you take your next dose. Many people refer to themselves as ‘on’ during the time when their medication is working, and ‘off’ when the medication has worn off.
   4. What you experience
      For some people, wearing-off can begin within one to two years of starting levodopa therapy; for others, levodopa may remain effective for five years or more. Everyone’s experience of Parkinson’s is different, so the wearing-off symptoms you notice are individual to you. Many people find that problems with movement (motor symptoms) return during wearing-off, but other symptoms (non-motor) can also occur...
   5. Diagnosing wearing-off Because people with Parkinson’s usually visit their doctor when they are ‘on’ (i.e. medication working), your doctor may not realise that your symptoms return between doses of medication. Don’t wait for your doctor to ask about wearing-off – tell them how long each dose of medication is working for and what happens when it wears off.
   6. What can be done?
      Your doctor can help you manage wearing-off by adding to or changing your medication, dose or schedule. There are several ways to increase the time you spend ‘on’ and decrease your ‘off’ periods. These include:

   • Changing your dose, dose frequency or timing of medication
     
   • Changing your medication to include drug(s) that prevent breakdown of levodopa within your body (these can extend the duration of benefit of levodopa, and may be combined with levodopa in a single tablet or taken separately).
   • Changing the formulation of your levodopa to provide controlled release
   • Adding another class of drug, such as a dopamine agonist, to your medication.
6. Am I experiencing wearing-off? A wearing off question card has been developed by Parkinson’s specialists to help you recognise whether you experience wearing-off. Each question asks whether you experience a certain symptom during a normal day, and whether this symptom improves after taking your next dose of medication. If one or more of these symptoms develop during a normal day, and improve after you take your medication, you may be experiencing wearing-off.

HOW ABOUT ME

Who knows what our dark shadows have planned? We are all different. I started off this epistle by recognizing my hypochondria and so I believe I may be in the early stages of wearing off as my symptoms are a little (tiny) bit worse about a half hour before my mediation is due, but every problem described above in the opening paragraphs can be explained,

• stiffness - I don't do enough stretching and sitting at a computer for hours on end does not help
• Lower back pain - I have had back problems since I was 16; although they have been on hiatus for a few years prior to a couple of months ago.
• Leg cramps are more frequent but not nearly as painful as when they first appeared
• walking ability - first gear speed is persistent but is probably just an indication of the advancement of PD, rather than a wearing down feature.

I hate this condition. I will continue exercising daily to slow it down but I know it will get me in the end - unless of course cures postulated in the media prove to be true, but then, there is that whole "Fake News" kerfuffle in the USA

A parable within a treatise on pigs and peeing

Okay, my dreams are getting particularly weird these days. Last night's was a doozy. Also unbelievable... but nevertheless...real

It starts with me and some friends stalking a wild pig as he goes to a meeting of - I forget its name, but it is something to do with pigs. Unknown to us, the pig has "made" us and is reporting our presence to the chief hog.

Now there is no way I can describe the chief hog and his minion hogs (where did they come from?) that will adequately give you an idea of their appearance, except to say they are evil incarnate, with bold flashing tusks, curled at the tips, dripping with blood. The chief hog catches a glimpse of us and bellows an order causing all of the hogs to turn in our direction.

"RUN!", I yell,"To my house."

Somehow we beat the hogs to my house and we close and lock all doors and windows. The chief circles the house, snorting and bellowing and looking for blood, our blood. Finally he gives" instructions, in pig language I have yet to conquer, and the hogs all run at the door, their tusks penetrating the wooden door and pulling it free.

"UPSTAIRS", I scream, "To my bedroom. Close and lock the door" I can now see there are five of us sitting in or on various spaces, their shadows dancing on the walls.

The hogs are battering my bedroom door, the points of their tusks start to poke through the wood. Soon the door will be destroyed.

"GET UNDER THE COVERS. Maybe they won't see us." We all get under the covers just as the hogs storm into the room.

Sorry folks. That is when I wake up. I had to "pee" for the fourth time that night. It is very unsocial of PD to interrupt my dream with the need to make a bathroom stop. Apparently this need to pee is rather common in our tribe.

From the National Parkinson's Foundation:

Urinary incontinence (involuntary loss of urine) is a common symptom in Parkinson's disease (PD).

Why do problems occur in PD?

The bladder is a muscle which gradually expands as urine collects. At the opening, there is a muscle called the sphincter. This muscle is usually closed except when urinating. Both muscles are controlled by the brain. When 1-2 cups of urine have collected in the bladder, the bladder may begin to have small contractions that signal the brain that the bladder is filling up. The brain can suppress the contractions until it is convenient for the person to go to the bathroom. When ready, the brain allows the bladder to contract while the sphincter relaxes. This allows the urine to leave the bladder.

Difficulty holding urine is the most common problem.

In PD, the brain’s control of the sphincter is disturbed. The bladder becomes overactive and wants to empty even when there is just a small amount of urine present. This results in following symptoms

• urgency
• frequency
• incontinence
• repeated nighttime urination.

Drugs are available (e.g. Ditropan®, Detrol®, Vesicare®, Hytrin®, Probanthine®) to help. These medications relax the bladder muscle.

If I ever dream the conclusion of the pig story, you all will be the first to know. Until then, I am left with a quandary, i.e. why did the pigs waste all that time battering down the front door when they could have easily come through a window? They can jump, you know.

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