#238 PD Numbers, Facts, and Photos

PD Numbers, Facts, and Photos.  This post goes into some of the statistics about Parkinson’s Disease, presents a few “who knew” facts about the condition, and photos from my back files from 2011 and 2012 just for the fun and beauty of them.

Not a luxury stay in north Scotland village.

PARKINSON’S DISEASE BY THE NUMBERS

Anne tees off on the 3rd hole at St Fillans GC. We were members of the club for 10 years.

Black Headed gull

       

        — 1.2 million Americans live with PD

— 90,000 new cases are diagnosed in US yearly, that’s 200  new cases a day

— 100 sufferers dies from PD related causes a day

— Over 10 million individuals are affected globally 

A "Force" (waterfall) in the Lake District in England.

The Falls of Dochart in central Scotland during the rainy season, January through December.

Gannet 

— Men are 1.5 times more likely to have PD than women

— Approximately 15% of people with PD have a family history with the disease, 85% don’t

— Approximately 4% of PD sufferers are diagnosed before the age of 50, it’s called  “early onset”

Stone circle near Killin in the Highlands.

Maes Howe, a neolithic burial tomb, on Orkney Islands with double rainbow.

— Combined direct and indirect costs of PD (treatment, Social Security, lost income) is expected to be $82.2 billion in 2026

— The cost is expected to rise to $112.6 billion by 2045

— Medications average $2500 yearly per individual 

— For professional treatment, 50% see neurologist, 9% see movement disorder specialists, 29% see primary care physicians, 11% seek other treatments [My treatment team consists of my PCP, neurologist, specialized movement and voice therapists, and caregiver Anne.]

— Hundreds of millions of dollars are spent annually by private foundations and non-profits on research, clinical care, and professional training related to PD ($100-$300 million yearly by Michael J Fox Foundation, $40-$50 million annually by The Parkinson’s Foundation, and lessor amounts by others).

Scottish Thistle

Branklyn Gardens in Perth, Scotland

PARKINSON’S “WHO KNEW” FACTS AND INFORMATION

*Parkinson’s Disease hits every individual differently. No two people necessarily have the same symptoms, or the same timing of symptoms as anyone else.

*Non-motor symptoms (constipation, depression, sleep disruption, anxiety, fatigue, problems of cognition, pain, ED) can be more troublesome than major motor symptoms (bradykinesia or slowness of movement, resting tremor, rigidity, loss of balance).

*Most PD patients will experience micrographia — small, cramped handwriting that gets smaller as you write. My handwriting has gotten harder to read, but it does save paper. 

Anne at Machrihanish Dunes GC about 5 miles from Paul McCartney's estate in Scotland.

*If you die from a PD related cause, you have a much lower risk of dying from an auto accident. 

NEXT: I'll see what I can find, Maybe a mix of old and new.

#237 Parkinson's, Special Garden Shop, and Photos

#237 Parkinson’s, Special Garden Shop, and Photos

Arrowhead GC, Molalla, OR

While traveling in Scotland, playing and researching for our golf books, we discovered [Sure. like we were the first to notice.] an abundance of interesting farm shops. Establishments like Gloagburn Farm Shop (Tibbermore near Crieff), Balgove Larder (Strathtyrum Farm, St Andrews), Househill Farm Shop and Cafe (near Nairn), and the Storehouse farm-to-table restaurant (south of Dornoch) all became regular stops for Anne and I as we traveled the country. We were glad to find that we had a similar shop in our area. But before I detail Bauman’s Farm and Garden I want to share some more information about Parkinson’s Disease, the fastest growing neurological condition in the US.

For photos in this post, besides the photos of Bauman’s, I’m starting with some golf photos—since I’m constantly lifting my head on a shot when I’m supposed to keep my head down, I thought I’d show what I’m looking at when I lift my head. Then I’ll end the post with a short photo surprise. 

Either Godzilla or a Teenage Mutant Ninja Turtle over the GC

Parkinson’s and the Gold Standard Treatment

Parkinson’s Disease (PD) is a movement disorder where the best treatment is often movement. Exercise can be the best aid to fighting some of the major seen and unseen symptoms of the disease. I am currently in a program called SPEAK OUT! where I am learning exercises to strengthen my voice and swallowing muscles—loss of speaking ability and volume is a very common PD condition if not controlled. But the Gold Standard pharmacological treatment of major symptoms is with dopaminergic drugs designed to help produce more dopamine or maintain the dopamine left in the brain—by the time most people are diagnosed with PD we have already lost up to 80% of our movement controlling dopamine in our brains. In fact, one of the clinical diagnostic tests to see if someone has PD is to see if symptoms respond to Levodopa treatment.

In my case I talked to my family doctor about a list of things that were happening to me such as slowness of movement, freezing (not being able to move), resting tremors in both hands, and more. The list indicated PD, so the doctor put me on a regime of Carbidopa-Levodopa, one pill three times a day. I responded well, so “Welcome, Bob, to the world of Parkinson’s!” There is no evidence that taking C-L (the Carbidopa is an anti-nausea drug to help tolerate the Levodopa)  has any affect on the progression of PD, but it does help reduce symptoms. I now live pill-to-pill and can definitely tell when my C-L kicks in (about 20 minutes after taking it) and when it’s run out (about three hours after taking it). Eating, driving, exercise, working on writing projects are now controlled by my pattern of taking Carbidopa-Levodopa. For me right now this pattern is 1-1/2 pills at 7:00AM, 10:30AM, and 2:00PM, and one pill at 5:30PM and just before bed at about 10:30PM.  And this pattern will change as the the progression of the disease advances.

But nothing is simple with Parkinson’s. Sinemet (another name for C-L) works for now, but it will eventually stop being as effective at controlling symptoms. When that happens I’ll go into a whole new system of controls that I have yet to explore. In the meantime, I also have to deal with the side effects of Levodopa which comes with it’s own laundry list of problems—nausea and vomiting, orthostatic hypertension (drop in blood pressure), psychiatric effect (like hallucinations and anxiety), constipation (one of the most common and troublesome), daytime sleepiness, impulse control difficulties, and dyskinesia (abnormal movements or gait). As I’ve said before, Parkinson’s Disease is an adventure—not an enjoyable adventure and one I’d wish on no one—but an adventure all the same.   

A Near Farm Store

Bauman’s Farm and Garden (12989 Howell Prairie Road, Gervais, OR, 503-792-3524, www.baumanfarms.com near Woodburn ) has been a family farm since 1895. A small market was started on the land called Howell Prairie in 1988. The farm store grew bit by bit: first vegetables, then flowers, and a small bakery. Now Bauman’s Farm and Garden has a large bakery specializing in donuts, fruit pies, and pastries using Oregon’s own Marionberry. The store also has a large food store for produce, fruits and vegetables, and gourmet foods—the mushroom steak sauce is one of our favorites—along with the sweets, of course. The green house shop has flowers, plants, and local advice. The garden center has a broad array of edible gardening, hanging baskets, annuals, roses, trees and garden supplies. When you want a break from shopping, or to fortify yourself before shopping, visit the deli/coffee shop with sandwiches, soups, sweets, wines and ciders.

Nice Farm Shop lunch, but bad photographer's timing. Sorry.

Bauman’s hosts several special events during the year including Spring Open House (March), Gardenpalooza (April), Harvest Festival (Sept/Oct), among others. We miss visiting the farm stores of Scotland, but find that we have one at least as enjoyable and closer to home in Bauman's.

Saw Ed H, a golfer friend, working in the shop.

Starting to load the car with our treasures.

Hooray! I've finally broken into my storehouse hard drive of earlier photos. Here are a few of my favorites, with hopefully more to come.

Himalayan Blue Poppy

Branklyn Garden in Perth, Scotland

#236 Parkinson's Hallucinations and Some New Photos

 

Our front yard frosted with hail.

#236 Perception and Pictures

Crocus in our front garden.

The pictures in this post were actually taken this past month by me. They are real photographs taken on Lumix ZS100 or Nikon Z50ii cameras. It’s the first time in quite a while that I’ve felt good enough to get out and shoot some new photos, even if they are just ordinary—most were taken at the Canby Community Pond which is always full of friendly fowl and rodents.

Hallucinations and Delusions

John, Anne’s cousin, responded to the last blog post [Thank you, John!] with a story about his cat called Ghost. Ghost was a found gray cat like my George and got his name from his ability to seemingly disappear on walks and reappear later in the walk. John’s story made me consider telling about the fact that George The Cat seems to be haunting me even now. Every so often when I’m in bed the covers (usually just a sheet) will fall in on me like it would when George would curl up on the bed at night. I know there’s no cat that just got on the bed, but it’s hard to ignore the motion of the covers is like George is right there. Either the ghost of George has just crawled onto bed to settle in for the night or it’s a Parkinson’s disease hallucination.

A bullhead or common goldeneye?

A pair of ???

A newly rebuilt garden path.

That brings me to this post’s information about living with PD. As many as 50% of Parkinson’s sufferers over the course of their time with the disease will be affected by hallucinations and/or delusions. These affects will be in the form of seeing things that aren’t really there (people living or deceased, animals living or deceased, objects), hearing sounds that aren’t real (extraneous sounds, music, voices), other sensory manifestations, paranoia (believing people are watching you or talking about you), and false beliefs (fears of loved ones stealing from you, putting you in harm’s way, or being unfaithful). The causes of these hallucinations and delusions are varied, but most can be attributed to the natural progression of the disease (changes in the brain) or the side effects of dopamine therapy where the increase of dopamine in the brain may cause the effects. If natural progression is the suspected cause then certain drugs may give help. If drugs are the cause then a change of dosage as well as a change of treatment drugs may be the solution.

Alas poor Yorick...

With Parkinson’s related hallucinations visual images are the most common type. The hallucinations may be minor called passage images (like shadows) or major called presence. Most of PD patients who experience hallucinations say that while startling at first, they actually get fairly used to them. Most patients know the hallucinations aren’t real, but still find them unsettling. One of the members of my support group said that her hallucination came in the form of a cat—she knew it wasn’t real because it was polka dotted and wearing a yellow bow tie. If I have to include hallucinations in my PD symptoms I hope that they aren’t the paranoid delusional type, but rather the mild kind, like George’s ghost. Although, I don’t think I would mind meeting the polka dot cat as long as he was still wearing the yellow bow tie.  

Wood Duck

Wood duck circles and reflections.

He'll see what he can do.

Next: I like the idea of new photos. I'll see what I can do.

Spring Sunset in Canby