A jetty in a jigsaw

Belated Parkinson's Awareness Month post #1 (blame it on PD apathy), inspired by Suzy’s fantastic April blog:

People with Parkinson's (PwP) are encouraged to do jigsaws for cognitive stimulation (keeping the brain active).

Often People with Parkinson's (PwPs) find something sweet helps their levodopa meds work better.

Glucose is most effective, but I prefer to attack a Snack!

Many People with Parkinson’s (PwPs), particularly younger people, start off with a dopamine agonist (DA) medication which mimics the effect of dopamine. Unfortunately a common side-effect is impulsive or compulsive behaviour, such as gambling.

Or compulsive shopping, which can result in…… collections of things that are not needed and not used.

Here is my collection of jigsaws, surely acquired because of the medication, from November till January (when PAD became an outlet!).  I did rationalise enough to build each of them at least once, before it became impractical for space reasons.

I love the Americana types, but am a sucker for nice paintings as well. I will still look at them in the thrift stores (op shops), but (generally) don’t buy them.

Us People with Parkinson’s (PwPs) met at the annual conference at Eugene, Oregon in April, during Parkinson’s Awareness Month. We stayed at the Hilton!

In this house, 4pm currently means the Jim Lehrer Newshour.

But for some People with Parkinson’s (PwPs), timers or cellphones will be going off and levodopa meds will be coming out of pillboxes.

The future is daunting to us People with Parkinson's (PwP), and after diagnosis we can sink down into despair.

To rise up out of that deep hole, follow our passions and aim for the stars, that is what we need to do.

Or, we could aim to get out of the bath ...

For us People with Parkinson's (PwP), going down stairs is often more difficult than walking up them.

It works best to lead with the weaker foot when going down and lead with the stronger foot when going up. And use the handrail so that we don't lose our balance!

OK, the inside goss I heard about this “blue” hangar being built at the local airport is that the Nike boss couldn’t have his private jet in with his corporate jets, so he had to have his own private hangar built.

And the Parkinson’s connection?
Nike raised $4.7 million for the Michael J Fox Foundation for Parkinson’s Research in 2011 with its Nike Mag “Back to the Future” shoe auctions.

Here’s a fun video promoting the shoe.

Eight stamp club exhibits were entered in our stamp show, which starts tomorrow. Twelve people will be selected to vote which is their favourite and why.

Today when helping to put up exhibits, I saw people with a variety of conditions, including another Person with Parkinson's (PwP). Some are exhibitors, one is a judge and others are on the committee. Many of them travelled a long way to be here, on planes or on rainy freeways.

None of these people have let their conditions interfere with their favourite pastime - philately (stamp collecting).

These red tulips have been in the garden long before I arrived, and they still bloom spectacularly.

Many organisations that are associated with Parkinson's Disease use a tulip as their symbol, and the red tulip is the international symbol for Parkinson's.

A New Year's Day tradition for my sister, my mother and I was to wear the same shorts.

I didn't inherit my Parkinson's Disease from my mother. It is idiopathic (meaning an unknown cause). That said, researchers have found around 20 genes that pre-dispose people to having PD.

Time to fill up the pill box for the week. I have all my tablets ready, including my Parkinson's medication.

Note that in the USA pills are dispensed into small orange bottles with white caps. In Australia, one receives tablets in the manufacturers' boxes.

I spy this salamander in the creek. I wonder if he can spy me!

Salamanders are most known for their ability to regenerate lost body parts, such as entire limbs. They have been used in Parkinson's disease research. Unlike mammals, they recover fully from a Parkinson's-like condition within a four-week period. Their stem cells are automatically activated when the dopamine concentration drops as a result of the death of dopamine-producing neurons.

People with Parkinson's (PwP) walk better if there are lines or other recognizable features in the footpath (sidewalk). The lines give them the visual clues they need to take bigger steps.

On the way back when walking the dog, I passed this red rhododendron bush, the blooms gorgeous in the afternoon sun.

We People with Parkinson's (PwPs) take time to stop and photograph the flowers.

Here's a 15-page display I created for Tuesday night's meeting, after saying on Sunday after the stamp show that I'd provide one.

Creativity can run strong in People with Parkinson's (PwPs) when they take certain medication. It could be something that they've never shown an aptitude in before.

I like to think I am a little more creative now. I certainly come up with lots of ideas for displays!

Bags can be a problem for us People with Parkinson's (PwPs). We fumble and are slow when we have to get anything in or out of them. We feel people are waiting impatiently for us to put everything in our bag and move out of the way.

This firm tote bag works well for me when I go to the post office. Because it is firm it doesn't collapse on me. I can put all the mail from the PO box in the bag without taking it to a counter. And it nicely holds a folder for the outgoing mail too!

In an attempt to understand my set of overprints more, I drew a larger version of the overprint and annotated it. It helped me to classify mine.

Like these overprints, every Person with Parkinson's (PwP) has different symptoms. Some have tremor as their major symptom but others have no tremor. Slowness of movement, rigidity and loss of balance are the other three main symptoms.

I have to check that there is no one else around before I let the dog off the leash on the home stretch. He is anxious about other dogs and other people.

We People with Parkinson's (PwPs) can get anxious about being with others in public, and it can drive us to stay at home and not socialize. There are drugs we can take for this. Anti-anxiety drugs are often prescribed, but beta blockers are a good option.

The grass on the church’s block near our house has been waiting to be mown for weeks. Look!! A lawn mower! It’s a miracle!!!

We People with Parkinson’s (PwPs) are waiting for a cure. Some of us participate in clinical trials. Others participate in awareness campaigns or fundraisers. Every little bit helps!

Occasionally we People with Parkinson's (PwPs) may have "off" days. Our medication isn't working properly and we might walk and talk like we are drunk. Other days aren't so bad and we are just slow, but other people aren't aware of our condition and become impatient with us.

I made these cards to show impatient shop assistants that there's a reason I am taking a long time at the counter putting my things away.

To date, I haven't used them for that purpose, but other PwPs thought they were such a good idea I made more for them.

One is to do with needing to have our medication on time, and a friend uses that in her mahjong group for when her pill timer goes off at 4pm.

All this is free. It is called the Aware In Care kit, and is meant to be taken to hospital with you as a Person with Parkinson's (PwP) to make your stay easier.

You or your advocate (care partner) will have to educate the nursing staff that you need your medications on time every time (see fridge magnet), and that you have a name.

The Parkinson's bracelet is all metal and is meant to be worn all the time, but I prefer a stretchy band so I can take it off easily, so I altered it.

When people think of Parkinson's Disease, they think of the shakes. Shaking = PD in their minds. It's black and white!

But in reality there are 50 shades of grey in there. Everyone's symptoms, reaction to medication and progression rate is different. Not everyone has a tremor, for example.

Also, chances are that if you do see someone with a tremor, that it will be what is called "essential tremor." With this tremor, even if you are doing something or holding something your hand is shaking.

A Parkinson's tremor is a resting tremor, so if I pick up something, it goes away (except if I'm stressed).

See? It's not all black and white…

Some People with Parkinson's (PwPs) have disrupted sleep and find themselves awake in the early hours. They may get up and do something quietly creative, such as writing. As a bonus, they get to see the sunrise, something we night owls miss out on!

When I first visited Oregon, I was fascinated by the different styles of houses in the neighborhood, especially with Halloween coming up. I took photos, and a few years later made webpages of them, comparing them with houses in Australia.

People with Parkinson's (PwP) are all different too - different ages, symptoms and reactions to medications. I made webpages describing my symptoms, diagnosis, medication and journey with Parkinson's. Those PwP who read it can compare theirs with mine.

To activate your pet, follow these easy instructions:

1. Lay pet on its back.
2. Turn head to one side.
3. Twist left ear anti-clockwise till it comes off. This make take a few rotations, so be patient.
4. The eyes should now light up. If not, replace ear, readjust head and remove ear again as per step 3.

Your pet is now activated and ready for use.

People with Parkinson's (PwP) benefit from exercise, and walking a dog every day provides it. If your pet is operating at proper levels, it will drag you along behind at a fast clip. This is called "forced exercise" and has been shown to be especially beneficial for PwP.

The frijoles (refried beans) side dish hubby made was yummy, and I ate more of it than the meat (protein) dish, which was a bit too rich for me. After a trip to the kitchen, I now know the "secret ingredients!"

People with Parkinson's (PwP) find it best to avoid eating protein for 2 hours after they take their levodopa pills, if they want them to be effective. I am glad I am not on levodopa yet. I can eat protein any time I want!

A little girl wrote a little letter to her little friend - and made a little stamp to put on the little envelope! It's gotta be unique!

Each Person with Parkinson's (PwP) is unique too. No two are the same. They each have different symptoms, medication and progression rate. Each will have a unique journey with Parkinson's.

A kiss.

People with Parkinson's (PwP) who learn mindfulness make more with their lives.

Life is short. Live in the moment. Take that kiss.

Here's a side view of that blue building I showed you earlier this month (new Nike hangar). Well, as I was walking up to it, the guy on top gave me a side view, as if to say, Oi! No photos! I sighed, as I wanted to view it from closer up!

Sometimes I spot people who look like People with Parkinson's (PWPs). I give them a side view, wondering if I should go up and mention my support group or just say hello. Would they welcome it or regard it as an invasion of their personal lives? So far I have just sidled off…

Some People with Parkinson's (PwP) do not come to terms with their diagnosis, and they spiral into deep depression. They feel that they are in the sunset of their lives, now that they cannot do some of the things they used to do well.

This is particularly so after losing a job, or for the Young Onset PwP who had expected many more years of normal life. Thoughts about ending one's life may occur.

Depression and anxiety in PwP are chemical imbalances of the brain and can be treated by anti-depressants or beta blockers.

PwP need to realize that there is life after Parkinson's, a new creative and "in the moment" life.

Life is what you make it.
Start now!