I received (as well as some others of you) a message from Scott McDonald today. Scott is a staff member of the Parkinson’s Action Network (PAN). With the message was attached the following link, which takes you to a video that “provides greater detail about this year’s [PAN] Forum. ” This will be “a live, online broadcast on February 17, 2010 from 11 am to 5 pm EST”, giving “greater insight into the Forum experience. ”

Thanks for PAN for the video and all the work they do for supporting those with PD/YOPD and helping in our quest to find a cure.

Watch the video and then make sure you register for the event at the link provided below.

Register here:  PAN Forum

Several years back, there was an extremely popular software game called Where In the World Is Carmen Sandiego? Originally the game focused on teaching geography and history. It had a catchy name. It was educational. It became popular.

Today, I’d like to introduce you to ‘our version’ of Where In the World Is Carmen Sandiego.

Many of you know that a couple months ago, my doctor and his staff were elected by their overseers at Deaconess Hospital in Spokane, WA, to be shut down, due to lack of funding from Medicare. Over 800 patients who were cared for by this outstanding specialist were left hanging. Due to legalities, he and his staff were unable to comment or answer questions regarding his future plans.

So, here’s what I want to do…

I am in limbo. I don’t know one neurosurgeon from the next in the area I now live in. I know I am not the only one in this predicament. There are many people seeking a quality neurologist and/or movement disorder specialist. Scanning the columns in the phone book doesn’t give you an idea of whether the doctor your finger lands on is quality or not.

If you currently see a neurologist and/or a movement disorder specialist that you consider quality, how about sharing? Please use the comment box and leave their name and city/state and a couple sentences as to why you’d recommend this physician.

People move, doctors leave, etc. and to find a new specialist can be frustrating. I will compile a list of physicians that you think give great care to their patients who continue to battle a movement disorder or neurological disease.

And, if anyone knows where in the world Dr. Anthony Santiago is now practicing – inquiring minds want to know.

Leave information in the comment box. Please include doctor’s name, city and state (complete address would be better, including phone number), reason why you would recommend this physician.

Thanks for the input!

Sherri

I’m glad to have helping me today blog about this issue, my very rational and upward thinking good friend from Washington, Jeanette. So here we go…

Media is a means of communication that reaches or influences people widely. Typically in the form radio and television, newspapers, and magazines.

The national media should take note! We’re tired of reading and hearing about all the celebrities deaths, divorces, and dalliances. Are there not more intriging, pressing, vital and ground-breaking issues to report????

For example….have you read anything about some real heros climbing a mountain in Africa because they have a passion about curing 2 diseases? If not, go, read, and be inspired by real regular people who give something back to their fellowman at www.theRegulars.org!

Or how about, scientific advances in medical research that can transform lives of people all around us? If we put the same effort effort into saving the industries that our economy is so dependent on, into saving peoples lives who can further impact other lives, more than our pocketbook might be enhanced.

We are entranced by the insignificant, and disinterested in the vital. Oprah, Jon & Kate, cellulite at the beach, peeks into where we should never be…that is where we are. Are these things really going to make a difference in anything?

Our hearts and minds are facing the wrong direction–inward for selfish reasons instead of inward in a search for our meaning and purpose in life. So many sit and think ‘the other guy’ will make the difference for them. Then one misses the spark that ignites the flame, which provides a fuel to keep on facing challenges, and brings a warm comfort that our souls desire .

So what we do to make this different? Make a decision, stop being spectators..find a passion that will impact more than your life, and go at it with every thing you got! It may not seem like enough to make a difference, but it will!!! Your life could be news to another. It could be media with meaning.

Your choice: accept the media madness or find your meaning and purpose…create your own news.

Judy & Jeanette

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 and never-ending 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. (Maybe write them a song, too.)

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.

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 doctor who specializes in PD (a movement disorder specialist or neurologist) 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!) 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.

If you are over the age of 65, your odds of having Parkinson’s disease, or PD as it is widely known, is three out of 100. Approximately ten percent of PD cases are reported to be in people under the age of 40.

How do you know whether you might have PD? The symptoms of parkinsonism (as it is commonly referred to in the medical circle) is a tremor in either or both side(s) of your body, difficulty in walking (slowness, stiffness, tripping, dragging foot), bradykinesia, and rigidity. Depression is also known to be one of the first signs, oddly enough. However, depression is also a symptom of many other things, as well.

Age used to be a common factor in that patients tended to be over the age of 65. Fortunately, having a celebrity and advocate like Michael J. Fox has brought much awareness to the effects of the disease. Because of his efforts and others fighting for a cure, we are becoming more educated and finding the growing number of people under 65 who are experiencing the effects of this disease as well.

Research now shows that men may be facing the risks of PD twice as much as women. Studies are showing that estrogen may be a sort of protection for women until their menopausal years. PD is show up in a higher rate of women who have had hysterectomies. Studies are also showing that PD progression is quicker in men than in women. Other differences show that while men are at a greater risk for rigidity and tremor, women tend to be more at risk for gait disturbance. The differences are showing great interest and the need for further research.

Many factors also come into play in regards to family history. People with siblings or parents with PD are at a higher risk for developing the disease, except for those with family members who developed the disease at an older rate. Their risk factor for Parkinson’s disease is average, with Caucasians leading among varying cultures.

While no one is recommending nor promoting the following, coffee drinkers and smokers tend to have a lower risk for developing this disease. For whatever reason, researchers have yet to understand why smokers appear to have a 40% lower risk for Parkinson’s disease and coffee lovers about a 30% less risk. It’s not suggested that the reader take up smoking or increasing their intake of caffeine, noting that both habits tend to raise other medical concerns.

So, with the risk factors in mind and giving a bit of background, how is PD diagnosed? Does it mean if you’re smoking, PD is not a cause for concern? If PD doesn’t run in your family, should you not worry over the tremor that has developed the past six months in your hand? Perhaps there is cause to see your doctor for some precautionary checks and if s/he feels it necessary to refer you further, a neurologist or MDS (movement disorder specialist) will most likely be your next stop in diagnosing whether or not you have Parkinson’s disease.

When a movement disorder specialist performs a neurological exam, a medical history is recorded, followed by a physical exam. (Hopefully, the patients’ records have been forwarded by this time from the physician who referred him.) The patient is then asked a series of questions about symptoms that s/he has experienced while the doctor observes him. Following, the patient is asked to perform certain and highly relevant tasks as the physician continues to observe and note the results.

The neurological exam, while perhaps seeming what some may consider having to perform a series of silly and mundane physical feats, is actually a thorough evaluation of the nervous system. This evaluation is a very important part of the neurologist’s test in determining the patient’s diagnosis. It gives him/her the information needed to make a correct clinical diagnosis of whether Parkinson’s is indeed present.

Doctors must rely on judgment when considering a diagnosis of PD. They are familiar with the characteristics of the disease, the signs and symptoms, and therefore have a keen ability to make a proper diagnosis. They observe how similarly the symptoms and findings from the neurological exam in a patient mimics PD. Their conclusion is known as a clinical diagnosis.

It is after the diagnosis is finally made that drug therapy is discussed andusually begun, depending upon the severity and progression of the disease. Since PD affects each of its recipients differently, drug therapy will also differ, depending on age, symptoms and other various and important factors.

It can be said that Parkinson’s is a chronic disease for which there currently is no cure, but it is not a death sentence to those who find themselves sitting in a chair across from a doctor who has just uttered, “You have Parkinson’s disease.” It can be extremely frightening, but it can be controlled for most cases.

The patient has the ability to chart his/her course of action. If you are the patient, you will summon strength you did not know you had in order to fight the ‘little monster’ – if you choose to do so. Your physician/neurologist can only recommend a path of treatment. You will be the one who ultimately chooses to walk it. However, as a new member of the PD community, you must know that you will do not walk this new path of PD alone (unless of course, you choose to do so. And that would be a very sad choice).

If you have recently been diagnosed with Parkinson’s disease or know someone who has, simply type in Parkinson’s disease in the search bar of your browser and begin your search. There are hundreds of resources at your fingertips. Try being more specific and add ‘support groups’ to your search and the state you reside in. The community of people living with Parkinson’s is ready to embrace you and be a valuable support… if you choose to let them.

Julie Sacks, MSW, LCSW, Director, American Parkinson Disease Association National Young Onset Center discusses the importance of reaching out and making connections within your community.

Check out (if you haven’t already!) the new website for NYOC. Lots of great info, resources, and more! If you’ve been diagnosed with YOPD (Young Onset PD), it’s worth your time.

Jeff Shaw, Psy.D, Neuropsychologist at the Booth Gardner Parkinson’s Care Center, Kirkland, WA. Dr. Shaw will present “Playing to Keep Your Brain Working: Art, Recreation, and Technology.”

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Becky Farley, PhD, MS, PT, and Cynthia Fox, PhD, CCC-SLP of the University of Arizona. Dr. Farley and Dr. Fox are pioneers in an integrated speech and physical therapy approach to Parkinson disease treatment. They will explain the principles behind “Big and Loud.”

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