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.

WHO DO YOU GO TO?

20130501-110128.jpg

I love lists. Grocery lits. Cleaning lists. To Do lists. I like checking things off on lists and feeling a sense of accompishment. If you search around my website, you’ll find lists: a list of books to read about Parkinson’s disease, a list of resources (websites, articles, etc), a list of blogs related to PD and more.

Today I am (hopefully with your help) going to start a list of doctors. Doctors who have earned the respect of the patients within the PD/Movement Disorder community. 

It can often be extremely difficult for people with movement disorders to find a doctor who can best treat them in regars to their disease and often end up driving many miles to see their doctor when a good one may be right in their own town. And, to someone just starting out seeking for a qualified doctor, one name isn’t any different than the next.

Do you have a neurologist/movement disorder specialist that you trust? Respect? One that takes you seriously and makes you feel as if you’re not just another number and you matter? Stays currrent with treatment options?

If so, would you ming helping me make another list? A list of doctors (I’m concentrating on the United States but will include other countries if they come in) who specialize in movement disorders.

Here’s what I’m looking for:

  • The name of the doctor you would recommend.
  • Their location 
  • The physician should be a neurologist/Movement Disorder Specialist
  • Should be taking new patients
  • Why you recommend them (optional)
If  you can help, please leave a comment below (if you are reading this on the Parkinson’s Journey website) with the information above (your name will not be included unless you want it to be and comments will not be poste). Or, if you are reading this elsewhere (Facebook group or page, Twitter, etc), you can email the information to me (Sherri) at  parkinsonsjourney@gmail.com
 
Thanks!

YOU COULD EARN $300 FOR HAVING PD AND A RECHARGEABLE DBS IMPLANT!

Qessential, a medical market research company that is devoted to the medical device and pharmaceutical industry, has a client that is currently seeking to conduct in-person interviews with individuals who have Parkinson’s disease and who have received a rechargeable DBS implant for the management of their symptoms.

The goal of the study is to understand what the individual dealing iwth PD goes through, how he or she makes the decision to get a DBS unit, how both the device and his/her condition impacts day-to-day life, and what could be changed about the device or the process of receiving the device that might make things better for the individual, as well as for others dealing with the same situation.

The study involves a two hour in-home interview with an honorarium of $300 upon successful completion. Interested individuals may contact Deborah Booker of Qessential directly at 1-800-932-4249 or email her at Deborah@qmmr.net.

Please note:
*Patients should have rechargeable units.
*Patients should have received implants preferably (not mandatory) within the last year.

*Patients should preferably (not mandatory) be under the age of 70.

The company is happy to speak with individuals who fall outside the preferred parameters, as well, and to add their contact information to their database so that patients can be contacted about future studies related to PD.

 

Related Posts Plugin for WordPress, Blogger...