Bringing Awareness to Something You’d Just as Soon Forget

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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

WHO DO YOU GO TO?

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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.

 

Fears of Parkinson’s Disease

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You are sitting across from the doctor. You don’t notice that his desk, newly waxed, is void of disorganization. Focused on the fact that you now have PD, fear begins to envelope every inch of your body. From head to toe, you sit frozen and numb.

What does that mean? Am I going to die? Should I make a will? Will I be able to keep working? What’s going to happen to me? Will I be a burden to others?

Fears are normal. Fears are a part of life, even if you were not just diagnosed with a chronic disease. Now, since we brought that up, let’s look at that aspect of the disease first.

Parkinson’s disease (PD) is not a terminal, but a chronic disease. The difference is that with a terminal disease, the patient is usually given an estimate of when they can expect to worsen or pass from the disease itself. A good reason to be thankful that PD is chronic and not terminal. With PD, however, you are dealing with a chronic disease. Yes, it is annoying, persistent, sometimes unrelentless, never-ending and can cause complications with other health issues, but it will not kill you.

So, take a deep breath as we face another fear… What does PD mean?

Parkinson’s Disease, put simply, means your brain doesn’t work the way it should, specifically in regards to producing dopamine, a chemical that is relevant if you want your muscles to mind you. Since it does not do what it should, a drug therapy treatment is set in motion to psyche out your brain into thinking it has what it takes to be normal. This will need adjusting every now and then, but so do our backs.

So, take another deep breath and let’s face another fear… Should you make a will?

Whether you have PD or not and are of an adult age and especially if you have a spouse and/or kids, definitely make a will. Don’t do it because you’ve just been told you have PD because we have already established you’re not going to die from this little monster. Do it because you love the ones your with. 

Another deep breath is in order as we move on… Should I quit working?

That depends on you and how you are doing. Every one is different. You may have stepped into the doctor’s office for any number of reasons. Maybe you’re exhausted and could not find a reason to explain the recent falls. The tremors? Speech had changed? Something else? If you are still capable and love your job, stay. Numerous PD’ers are still going strong at work while they fight this thing. Some find they are exhausted from both the disease and having to work, and they then do not have the energy needed to give to their family. Prioritize. Maybe the best thing is disability. That’s not a bad thing. It means you are taking care of yourself. However, be advised that the disability process can take time, so be patient and consider starting the paper process for SSI before you have to..

Aahhh… onto the next fear: What’s going to happen to me?

Everyone fights this little monster differently. Some deal with tremors as the predominant symptom. Others suffer with some degree of pain. Some are blessed with the inability to be heard or to smell (the sniffing kind of smell). There are other factors that can come into play, but the important thing is to find a neurologist who specializes in PD (a movement disorder specialist) and one whom you trust. He’ll work closely with you to find the best treatment for your individualized care and it will look different from everyone else with PD as PD is an individualized disease and has many faces. So, how to answer the question of what’s ahead? You take one day at a time. Do not stop exercising (or start excercising!) as it has been proven that staying active can lessen some of the symptoms and sometimes lessen the medications needed to fight the symptoms that are there.

Finally, the fear of being a burden…

What is a burden? A weighted load. A problem. A drain. That sounds like a terrible thing. Just because you now have PD, it does not make you a burden. You have not become a problem but now have the opportunity to reach out to others with a like condition and understand their plight and come alongside of them and be a friend, a help, a support.

You now have the opportunity to make others more aware of this little monster, because where once you barely knew what the letters PD meant, you know now much more and can speak from personal experience to bring attention to this disease in order to help find a cure.

You – a problem to others? A drain on their life? No. Unless you choose to be.

Keep your head up, keep smiling and if you weren’t the smiling type before, learn to do it now. Someone else needs you to come alongside of them when they walk out of that doctor’s office and you may be the only one that understands how they feel.

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