It’s A Wrap: Bringing Parkinson’s Awareness Month to A Close

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Even though Parkinson’s Disease Awareness Month will be coming to a close as of today’s end, we can still continue to spread the word. To celebrate the last 30 days of an attempt to educate, inspire, and bring awareness to this little monster and its ability to change the course of one’s life, here are my top 3 favorite awareness items from the month by three different sources: Sheryle Klingelhofer, Beth Bjerke, and PJ’s most popular “Top Ten”. 

 

 

PRICELESS! 

This one’s from Sheryl Klingelhofer, Facebook page “A Life with Parkinson’s”:

OK, MOST folks talk about the support they get from friends and family with their Parkinson’s and dystonia difficulties…however I hear of some who say that after their diagnosis, they are often rather abandoned or even get griped at over the disorder. And while we HOPE that insight and education through gentle sharing would work, well, it often doesn’t.

It may be from a movie, but if you get bugged by insecure or unfeeling individuals, try this little quote…it sums it up for them nicely!

 

 

Next, we have the popular

THE TEN THINGS PARKINSON’S PATIENTS WANT,

(sort of)


1.  To feel good.


2.  To smell (what’s baking in the oven).

 

3.  To have people believe that the person with PD isn’t pretending to have a chronic disease.                                Really. We have better things to do.


4.  For others to understand that although they can’t see all of the effects, the disease is real.

 

5.  More dopamine. We gotta have more cow bell dopamine.

 

6.  To not shake all the time. It would be so nice to stir our coffee because we want to.

 

7.  For others to be aware of the struggles and invisible symptoms people with Parkinson’s face so that they are better able to understand the fervency and urgency of a cure.

 

8.  To find a drug that doesn’t knock you out for half the day, but instead, knocks out PD.

 

9.  A plastic bat to hit others over the head when they make thoughtless comments.

 

10.  A cure



and then last, but not at all least, a plea from Beth Bjerke:

“Last week I changed my profile picture [on Facebook] from what was a symbol of Parkinson’s Awareness Month, to a picture of myself. As nice as the comments were, I was taken by surprise by how many took the time to say something nice. Yyet on the other hand, I’ve posted something about Parkinson’s [most everday this month] and it [seems] to go unnoticed. I, like so many others, am fighting a progressive disease that has no cure.

There are many three- or four-little-words sentences we all like hearing: “You look nice…” or “I love you…” or “Have a nice day…” 

However, there is also another four-word sentence I so hope to hear, not only for myself but for those inflicted with the disease and those yet to come.

Four simple, yet complicated words…

THERE IS A CURE.”

I do believe that one day Parkinson’s disease will only be a memory. That is called having hope. Without that hope, what do any of us really have?

April is Parkinson’s Awareness Month. We are at the end an I am reaching out to all – take a moment and help bring awareness to Parkinson’s disease. Please let me know you’re behind me, that you truly care, and that I’m not just another face.

Beth”


How about you? Is there something YOU can do?


Parkinson’s Prose

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Day 27 of Parkinson’s Awareness Month continues with
 
“A Parkie’s Prose”

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I have this muscle in my body

More like two or more makes three

I tell them to do this or not to do that

But they no longer listen to me.

***

They have control of most everything

they move me all over the place

doing strange things I don’t want them to,

like taking control of my face.

***

I drool when I don’t even know it,

And it’s quite an embarrassment to me

I flail about and fret within

and wish that I could just be set free.

***

Instead it seems to get worse and not better

I stumble when I just want to walk

I take too long checking out at the store

And I slur my words when I want to talk.

***

My writing’s getting worse every day

It’s getting smaller and harder to read

There’s no reason to tell you all this stuff

except that I’m trying to plant a small seed.

***

You see, people really aren’t aware of the consequences

from having this chronic disease

but there’s so much more than shaking around

So – I’ll enlighten you now, if you please.

***

Tremors are the most well known symptom

Then perhaps walking rather awkwardly

Some call the walk the Parkinson’s shuffle

Because we kind of look like a penguin, you see.

***

This disease knows no boundaries

And it plays no favor-its

It picks and chooses its victims

And leaves them defenseless, bit by bit.

***

It takes a little of our independence each day

Takes our voice, sense of smell, and our smile

It takes our self-worth, our confidence, our sense of pride

And leaves us feeling quite useless after a while.

***

It makes us feel stiff, depressed, weary and tired

Not just from the disease, but the medicines, too

For the pills may help this symptom or they may help that one

But we could really use something better, something new.

***

Between having tremors and finding it difficult to swallow,

Losing our balance and feeling like we’re just a burden as well,

When we’re stiff we find it hard to stand up straight and tall,

We deal with pain –oh, there’s so much more I could tell.

***

But the purpose is not to seek pity

or make others fear this disease and back away

But to make you aware of the burden we share

And the hope through a cure soon some day.

***

You see, it’s only in telling others what we deal with

The symptoms, the medications and all of the rest

That people can begin to see that it’s more than just shaking

That puts our patience and caregivers to the test.

***

And so together we will stand united

As we battle and wage war for a cure

We’ll stand tall, hold to hope, keep the faith, won’t back down

The cure is coming, of that we are sure.

*****

by sherri woodbridge

Day 21: Parkinson’s Disease and Dementia, Part 1

I had a reader ask the question: “Why is there never any commnets on Parkinson’s dementia? It is very real and 40% of Parkinson’s patients deal with it.”

So I began to look into it. And a simply answer to the question posed would be, “because I don’t want to think aobut that stuff.” It’s frightening, to say the least. To propose that this disease could dominate and take over my mind (different than that being my ‘brain’), amongst the other things it’s already taken, frightens me.

But it is a real possibility, no matter how frightening.

An estimated 50 to 80 percent of those with Parkinson’s eventually experience dementia as their disease progresses. The average time from onset of Parkinson’s to developing dementia is about 10 years.

It is believed that the two most common causes for dementia in older people are Alzheimer’s disease  (a progressive mental deterioration that can occur in middle or old age, due to generalized degeneration of the brain. It is the most common cause of premature senility.) and another condiiton called vasular dementia, which is a condition that involves changes to the brain’s blood supply. However, Parkinson’s disease, an HIV infection, head injuries and Lewy body disease have also been known to caused an arise of dementia.

What complicates matters further is that in those having PD dementia, plaques and tangles are also present. Plaques: not the kind dentist removes from your teeth. Tanlges: not the kind you comb out of your hair. No, we’re talking serious stuff here. Plaques are deposits of a protein with a funny name that form around blood cells that have died. As they form through death, these little monsters begin to cling to one another and form clumps – plaques. The little monsters build up between good nerve cells, preventing them to send messages to each other properly.

Tangles are formed of of nerve cells known as tau protein that are either on their way or have made it to death row. They bunch togehter, twisting (or tangling) around each other, forming tangles of nerve cell fibres. While tangling up the paralles stands of tau protein nerve cells, they fall apart, disintegrate and destroy the cells’ irreplaceable communication system.

While all this is going on unawares to the patient, the plaques and the tangles quietly continue to gather inside of the brain, causing other nice and healthy nerve cells to eventually wither away and die a silent death and the area of the brain in which these little monsters had their fun fest shrinks.

If a person with Parkinson’s disease also has these so-called plaques and tangles, this complicates things, as these are the hallmark brain changes that have been found linked to Alzheimer’s disease.

I told you we didn’t want to think about this stuff. But, it’s real. It’s a part of Parkinson’s disease that we need to be aware of, not so that we can try not to think about it, but so that we are able to receive treatment sooner than later, hopefully to postpone some of dementia’s ugly symptoms.

More tomorrow…

Day 16: Here’s What PD Feels Like and What DBS Did…

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I have been blessed by having Parkinson’s disease. Do I like having it? NO. But I have seen and experienced tremendous blessings because of it. Here are a few:

  • I have met and have had the privilege of knowing and being treated by one of the most knowlegeable, gifted, and wisest men in the movement disorders area of neurology. He has treated me for over ten years now and I feel blessed to be able to call him not just my neurologist, but friend.
  • I have had to learn to receive because I can no longer just give. This was a very uncomfortable but incredible blessing.
  • I have learned anew the worth and value of each fleeting moment, each new day.
  • I have met some incredible people because of this disease. My favorites? Hands down – Judy Hensley and Tina Lagonegro to name two. Here’s why…
First there is a deep bond because of the Lord. Add with it Parkinson’s disease and you add a level of understanding that is hard to have unless one has walked a similar path. 
 
Judy and I met online through a community  health forum. We hit it off right away. She has become to me a comrade, a blessing beyond words and one of my dearest friends. I had the priviledge of meeting her several years ago when I was able to go and spend two weeks with her in Tennessee. I reflected on that trip upon returning home and was quite surprised at myself. First of all that I did something very unlike me (visiting someone I had never met (in person) – solo, mind you). Secondly that the visit was two weeks long with someone I had never met in person. And third, my reflecting made me realize that within that two weeks I never once felt awkward, uncomfortable, or like we had never met. Kindred spirits. There is no one like Judy, who if you didn’t know, owns the famous ‘da Coat, which has helped in raising awareness for PD worldwide.
 
And then there is Tina. There is no one like Tina. Tina is one of the sweetest women I’ve ever known and like Judy and I, also loves to see the wonder of God through the lens of the camera. Tina is an inspiration and a great encouragement to me. I’ve yet to meet her in person, but I am sure it will be as if we have known each other forever.
 
I mention these two wonderful women because they are blessings born out of having Parkinson’s disease. And also to lead into a video that Tina is in where she shares her struggle with PD. I encourage you to watch it if you want a first hand account of what PD is really like. (Tina’s section begins approximately 4:20)
 
 
The following photos were taken by Tina:
 
 
 
 
 
The following photos were taken by Judy Hensley:
 
 
 
 
 
 
 
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