Bringing Awareness to Something You’d Just as Soon Forget

IMG_9077.JPG

  
Some  people think Parkinson’s disease is a movement disorder and they would be correct. Others would say it is a disease that affects more than movement and they would be right. Some say it starts with a tremor and that is likely. Some say it starts with stiffness and that is a possibility but did you know the first symptom that is often overlooked and undertreated is depression?

April is Parkinson’s Awareness month and with that comes a responsibility to make aware the effects of this disease to the community at large by those affected by it. If people wtih Parkinson’s disease (PD) or people who know someone with PD don’t bring an awareness to this debilitating disease, no one else will. If it’s not important to make known the importance of finding a cure with those affected by PD, it won’t be important to anyone else.

PD can take many forms. It can begin with depression, as stated above, include tremors, dystonia (a cramping and tightening of the fingers, feet, neck, and/or other parts of the body. The Parkinson’s patient can experience dyskenesia – involuntary flailing about movements. These are the signs/symptoms that most people generally associate this diease with, but that is becasuse these are the symptoms of having Parkinson’s that are visible. Other signs that are not as commonly known and have been associated with having Parkinson’s disease include losing the ability to smell, uncontrolled drooling, a softening of the voice, walking as if you are dragging your foot, a shuffled walk, tripping/falling, and more.

Parkinson’s disease is also known as an invisible diease becasuse there are many other symptoms that are found with having PD. Along with the visible signs, the invisible signs take just as strong a toll on the body, both physcially and mentally. These invisible signs can include severe back and neck pain, migraine-like headaches, a tightening of the muscles, a change in handwriting quality, an expressionless face, and also depression, as mentioned above. 

Someone can have all the symptoms associated with PD, some of the symptoms, and/or some sympotms can change or disappear. PD mimicks so many other diseases, such as Lupus and Multiple Sclerosis that it often makes it difficult to properly diagnose and often takes a neurologist who speciaizes in movement disorders to make a correct diagnosis. This is especially true with people who are experiencing symptoms at an age uncommon to those riddled with PD (the elderly).  This age group of people – those who are diagnosed under the age of 60 – are known as patients with Young Onset Parkinson’s disease (YOPD) and the number of those being diagnosed with YOPD is increasing daily. What was once known as an “old people’s disease” is becoming more common with those under the age of 50.

There are several organizations with resources readily available for the asking. These include the Michael J Fox Foundation (michaeljfox.org), the Natioinal Pakrinson’s Foundation (parkinson.org), and the American Parkinson’s Disease Association (apdaparkinson.org). In Oregon, the Parkinson’s Resources of Oregon (parkinsonsresources.org) is available to answer quesitons regarding PD and also has much informatioin available to the public as well.

PD doesn’t play favorites. It does not take age into account, gender, or race. It can affect anyone, at any time. It can advance quickly or it can progress slowly. The cause and the cure is still unknown, which is why bringing awareness to this disease is so important. If I (now 55 and having had PD for 24 years) don’t think it important in bringing awareness to this debilitating disease, I can’t expect anyone else to think it important.

Journeying with you,

Sherri

Is Your Spouse Faking It?

IMG_6923.JPG

 I know of a woman whose husband tells her that he doesn’t believe she has Parkinson’s disease and that she pretends to have it to gain attention and sympathy. While this is not common, it’s not unheard of. You can call it denial on the part of the spouse. You can call it ignorance. You can call it whatever you want, but who in their right mind would want to pretend to have Parkinsons disease? 

 

Who, in their right mind, would choose to pretend to fall, to stutter, have coughing fits, or drool? Who would choose to pretend to speak in such a low voice so that you constantly get told to “Speak up! I can’t hear you!”

 

And who would want to pretend to shake in public so that every eye is on you? Of course there is the stone face that makes you look mad or apathetic all the time.  Perhaps if you paid me thousands of dollars to pretend I have PD in a movie – no, millions – I might consider it, but to pretend day to day to have a debilitating disease? Give me a break. And, wouldnt someone (whos pretending) rather spend thousands of dollars on a vacation, rather than give it to a doctor to make the game of pretend seem even more real?

 

Here is comment I personally heard a husband say to his wife (with PD)  who was acting a bit strangeIts like somethings wrong with your brain.”  

 

Gee… ‘Ya think? 

 

Every morning we wake up and gather the strength to get out of bed. We dont just pop up like a toaster tart and stretch like Jane Fonda. No – we push ourselves up our stiff, rigid,sore selves and (some of us) dont even consider stretching for fear of our muscles cramping up and putting us into seriously painful contortions.

 

We shuffle to the bathroom like a weighted penguin and thank God for the person who invented elastic waistbands.  We shower, washing the same frame as always, but taking twice as long as it once did, not so very long ago. We brush our teeth with electric toothbrushes so we dont tear our gums apart should the tremors take over during this daily task.  We dress, again taking twice as long as it once did and sometimes needing help, especially if there are sleeves, buttons, shoe laces, or socks to be put on.

 

After we have dressed and if we havenalready had our mornings medicinal cocktail, we have it now. It varies, however, depending on who you are and the doctor you have and whats going on with you personally in regards to your specific journey with Parkinson’s disease.  My regimen? Currently, because of having Deep Brain Stimulation, I now only  have six pills for breakfast, two for lunch, two for supper and one for bedtime. Mmm, mmm good. Did I mention the side effects that the medicines can cause?

 

As you learn to live with PD, you soon come to realize that every new day can present a new battle to fight. Every patient with Parkinson’s disease, as is true with any disease or illness, faces a different kind of day. Though their symptoms can be the same as another patient with PD, their medication may  vary due to tolerance or helpfulness. They may be on the same meds but their symptoms vary. One person may be having a good on’ day, with their meds working great, while another is having an off’ day where their medications dont work much at all anymore. They may be in the end stages or in need of re-evaluation.

 

You may act crazy where once you may have been seen as calm and quiet and a touch on the introverted side. Perhaps its the Parkinson’sPerhaps it’s because of the Parkinson’s and having come to the realization that you only get one chance at today, so you better make it count

 

Ive heard it said that with Alzheimers, the patient doesnt recognize family or friends after a while, whereas with Parkinsons disease, family and friends may not recognize the patient. A person with PD can act different. They can think differently than they once didOr maybe those of us who say we have Parkinson’s disease are merely trying to confuse those we love by pretending to act disabled because we have an unhealthy need for attention. Not.

 

If you know someone who says they have Parkinson’s disease and you think they are pretending, please think again. Theyd much rather pretend to be Cinderella or Prince Charming and live happily ever after than drooling all over themselves like a teething baby.


April is Parkinson’s Awareness Month. Please educate yourself on the disease if you haven’t already. For someone’s sake.

It Ain’t Over ’til It’s Over

adversity_quote.JPG

Today. The first day in the month of May. Did anyone see what happened to April? It seems as if it went as fast as it came.  April is gone. We can’t ever get it back. Any opportunities that April afforded are most likely past.  

But it doesn’t have to be that way. We don’t have to stop bringing awareness to Parkinson’s disease just because we’ve turned the page on our calendar.

I’m interested in hearing what you do, or would like to do, to bring awareness to Parkinson’s disease. Do you fundraise? If so, what was your most successful fundraiser? Do you have a funny coat that people wear and then snap their picture? Why? Do you sponsor walk-a-thons? Are they beneficial and accomplish your goals?

Do you have a goal in this life as you journey with Parkinson’s disease? A goal that brings awareness to this disease? A goal that leads researchers closer to a cure (like a fundraiser)? Do you have a goal of bringing knowledge of this disease by educating those who don’t understand it?

 

I would like to encourage you to come up with a goal this month of something you could do to bring more awareness to Parkinson’s disease. The official “Parkinson’s Disease Awareness Month” has now ended. But, until there is a cure, it ain’t over ’til it’s over.

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

image

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?


Related Posts Plugin for WordPress, Blogger...