Advocacy Brought Us Together

The Hill

On Wednesday, State Directors and Assistant Directors representing the Parkinson’s Action Network (PAN) stormed Capitol Hill to advocate for issues facing our community.  We met with our Senators and many of our state representatives in Congress. Even though I have done this a dozen or so times, the experience is exhilarating and empowering. I don’t deny that walking the miles of marbled corridors left a  few souvenir blisters and left me with a good night’s sleep, but it also gave me a sense of accomplishment.

The experience on the Hill was remarkable but even more wonderful is the camaraderie and friendship generated when we all got together. I thank you all for your advocacy work and the difference you make and strive to make. I truly enjoyed seeing all of you and look forward to our next encounter.  Until then, I wish you well.

Surge Of Urgency For Parkinson’s Disease Treatments And Cure

Illness isn’t partisan.  Both sides of the aisle are subject to health problems. Both sides are going to need more and better healthcare. Illness doesn’t care about socio-economic status, race, or anything else. It has but one mission , and that is to disrupt and challenge the patient. Life is challenging enough without illness, but when illness combines with everyday existence, life can seem overwhelming.

Lately, there has been talk by politicians and the media about colonizing the moon. Only in a comedy club would this even be funny! I am a huge NASA fan and fully support a space program. Let’s be rational. The technological costs and manpower to perform an operation like this would not only take an astronomical cost but it would require years of preparation, and for what purpose?

For the past 20+ years, I have been told that in 5 years we are going to have a cure for Parkinson’s Disease. I heard it from renowned neurologists and even former leaders in the Parkinson’s community. They assured me that a cure was in the pipeline. I was and remain skeptically hopeful. Until the cure comes, it is up to us, as patients, to do what we can for ourselves.

The United States put a man on the moon, largely to prove our abilities to the Russians during the Cold War, but the USA did it, and in a very short time period. It is this kind of focus and dedication to achievement that is needed to make a breakthrough in Parkinson’s Disease and many other illnesses.

Neurological disorders are usually chronic and degenerative, so time is critical. There ought to be a sense of urgency to uncovering the mysteries of illness on this planet before we go colonize anywhere else.

The Truth Is Out Somewhere

I’ll admit it. If I see an episode of the X- Files on television, I have to stop and watch it, unless I’ve seen it more than once. The writing and storylines for the show were bright in thought and dark in content, usually. The drama was compelling and the chemistry between David Duchovny  and Gillian Anderson was electric . The show worked. Each week  the show explored a mysterious and unexplained  phenomenon like aliens, monsters, black projects, and potential government cover-ups. This was all fantasy–right? Maybe, fantasy and reality are closer than we think.

Just this morning, a probe deep in space uncovered a planet with 2 suns, just like Tatooine, the home planet of Luke Skywalker in Star Wars. Earlier in the week, 50 new planets were discovered, many of which may be capable of sustaining life. The truth really is out there –but it’s here too!

Another recent story that caught my eye was about a cat that was missing for over 5 years but was re-united with her family. Miraculous and breathtaking  events that are hard to fathom  happen every day. What we think we know or take as fact may not always be so! It all starts with a flexible and open mind.

The same thought and tact applies in the battle for beating Parkinson’s disease! Neurological disorders need to be approached from a completely different perspective. Drugs and surgery may alleviate or at least reduce some symptoms,  but they only stay effective for so long.

It is my strong belief that Parkinson’s is an energetic disruption in the body and not just the brain. It may likely be a disconnect between the body and the mind. For this kind of problem modern chemistry and surgical techniques are limited. The human mind and body are yet to be totally understood.  There are still parts of our own planet that have yet to be explored and that leaves room for questions.  In the same realm, there are parts of the body yet to be understood and illnesses that arise without  any known reason. As much as we want to believe we have things in control– we don’t.   

It is just for that reason that alternative or complimentary therapies (Massage, Yoga, Reiki, Qigong, and many more)that we  need to  do much more exploration and embracing of what may potentially work for our own healing process. I have little doubt that our bodies are capable of healing themselves. It very well may be that each of us requires our own unique cocktail of therapies to activate the process. For some it might be a change in diet and heavy exercise and for others it could be a hodge-podge of  try , try, try,  until I discover what works for me. I have experienced and seen amazing results in myself and in others. Medicine needs a radical mind-shift, but until then, knowledge and a willingness to educate ourselves on  opportunities for improving ourselves is our best solution. What could be more important?

Imagine a world where patients improve, medical costs go down,  productivity rises, and who knows where it could lead us? The truth is out there somewhere–maybe it’s here.   

This is strictly my opinion. I am not a doctor. I am not a  scientist. I am someone who has dealt with Parkinson’s disease for about 25 years.

Celebrate Your Life — You Don’t Have To Celebrate The Parkinson’s Disease

Someone that I respect recently wrote an Op/Ed piece that I felt shined  a more negative light on people who maintain a positive outlook on people dealing with Parkinson’s disease.  My interpretation of the piece inferred  that Michael J. Fox calling himself “lucky” or anyone  who considers  themselves lucky to  have Parkinson’s,  to be a “Pollyanna”.  Pollyanna, (as I have read accounts and in full disclosure not read any of the books) went through extreme suffering but was grateful for what she did have.  I see this trait as nothing but admirable. If seeing  the glass half full as opposed to half empty, empty, or even dirty and cracked is Pollyannaish then paint me as a “Pollyanna”.  Having lived over 25 of my 44 years of life with this challenging illness, I am not naive nor am I uneducated. I am well aware that this illness robs millions of people around the world of their ability to move, to work, or to function as they choose. The mind seems to get a mind all of its own and neither the mind nor the body wants to respond to one another.   

Parkinson’s  symptoms of tremor and rigidity appeared in my life at the early age of 17. I spent over 6 years without a diagnosis, never knowing what I was dealing with or how fast it might progress.  Was I scared? Sure.  Did I feel  sorry for myself? Only, after I got booted out of Outward Bound for being considered a health risk to the rest of the hiking party did I feel a real loss, because of the bonds that I had made and my failure to complete what I had started.  Thankfully though, my dismissal from hiking the rugged mountains of North Carolina led me to my last 3 or 4 doctors who finally diagnosed me with Parkinson’s disease. Not until years later, did I realize that it took my leaving the group to get diagnosed and move on with my life. 

The diagnosis of Parkinson’s disease for most people, can be sheer shock and devastation, or sometimes provide a sense of relief such as, “I had a feeling that it might be Parkinson’s” is heard from someone newly diagnosed who was looking for the culprit behind the symptoms.

 As a support group leader, a frequent speaker,  an active advocate for Parkinson’s disease issues,  and as an attendee at several  conferences a year on issues related to Parkinson’s disease,  I can honestly say that those people dealing with Parkinson’s disease who keep a positive outlook, appear to be doing far better than those who are less positive. Staying positive is a choice.

Once I received a diagnosis, I had an idea of what I was up against. Usually, people with  early or young-onset Parkinson’s disease symptoms progress slower than older patients. The Disease can impair both mind and body, cognitive function, memory, speech, swallowing, balance,  gait, posture,  and numerous other challenges. Parkinson’s can unleash an array of physical and mental  complications and with side-effects from Parkinson’s  medicines almost every patient can have a unique combination of symptoms .  Some people with Parkinson’s  show little to no obvious physical impairments but may suffer strictly from cognitive issues or vice versa.

The really good news is that as bad as this illness is or may seem, there are numerous therapies, medications,  exercises,  doctors, and classes, support groups out there that can make a difference in your life and help you change your life for improvement. While I don’t discuss DBS (Deep Brain Stimulation) surgery, I have seen it help many friends and for some it has not been as positive.

Parkinson’s has taught me to appreciate every day, to appreciate and to truly be grateful  for the good things and the simple pleasures in my life. Whether one has Parkinson’s  disease or is in perfect health, the realization that a positive outlook not  only makes you feel better but makes those around you feel better as well. I didn’t choose to spend the majority of my life with Parkinson’s disease, but I did. Sure, illness throws roadblocks and detours in the path, but that’s where the ability to adapt and creativity come into play.  Any illness can change how you see yourself and may get in the way of your perception of who you really are.  This is an opportunity to take a hard look at your life and observe that maybe a change in lifestyle is in order. Reducing stress and altering your life for the better in diet, exercise,  and complementary therapies on top of neurological care can have a tremendous impact on mood and well-being .

I hope and wish for a cure for all of us. Until the puzzle of Parkinson’s disease is solved, I believe the best course of action is to stay informed, take the best care of your body and mind as you can, take your meds on time, eat low on the food chain, eat organic, and get your rest.

If every day were sunny and warm could you truly appreciate the loveliness without experiencing those cold gray damp days of winter? The balance of life exposes us to pain because without it, there is no knowing pleasure. 

Take stock in the fact that people care about you. Focus on the simple things in your life that you can appreciate, like having a comfortable place to sleep, clean air and water,  the beauty of Nature around,  and so many more details of life.

I would like to know what you think.

Picture Of The Week-PD Awareness Tulips

Bring About PD Awareness!

April is Parkinson’s disease awareness month and it is time to educate our communities, governments, and yes, even doctors, about Parkinson’s disease. It is time to dispel many of the myths that have developed over decades. 

Here are just a few:

 

MYTH 1) Only the elderly and Michael J. Fox get Parkinson’s disease (PD). Well, I got diagnosed with PD at the age of 23 but had symptoms at least 6 years prior to identifying it as PD. Michael got diagnosed with PD very young as well. Most people associate PD with older people in their 60′s and 70′s but more and more neurologists are finally recognizing that younger people are getting PD and it is not just a disease for older people.

 

MYTH 2) There are 1 million people in the United States with Parkinson’s disease. The truth is we just don’t know how many people in the US or the world have this illness because we have no registry or any way of keeping track of who has PD.

 

For more information on the development of a registry or to find out how you can help promote the registry, contact the Parkinson’s Action Network at http://www.parkinsonsaction.org/ or PAN to contact your state representatives.

 

MYTH 3) Deep Brain Stimulation (a surgical electrical implant)(DBS) means that I no longer need to take my medication. DBS is not a cure nor  does it mean that you will stop your medications. You may take less meds or find that you need them less frequently but you may still be on some regimen. DBS will not stop the PD but it may lessen symptoms and improve quality of life for some patients.

 

MYTH 4) Parkinson’s patients move uncontrollably and rapidly (dyskinesia) as a symptom of  Parkinson’s disease.  My understanding is that dyskinesia is not a symptom of the illness directly but is from too much dopamine being released into the brain and thus a rapid and explosive uncontrollable movement that erupts. Often, if the person can lower the potency or frequency of a certain med, the dyskinesia may lessen. Ask your doctor before you make any changes, please!

 

These are but a few of the possible misconceptions that the public should be aware of when we discuss Awareness Month. Let me know if you like this and want to see more myths about PD in future postings.

 

I am not a medical professional. I am just a long-time patient sharing my observations and opinions.  See your doctor for medical advice–not me.

10 Medical Questions To Ponder – I Think

1. Why isn’t there a National CareGiver’s Appreciation Day?

2. Why isn’t there a day devoted to remembering friends and loved ones who have left us?

3. Why do we (the USA as a culture) shy away from the ill, the frail, and elderly, when they need the assistance the most?

4. Why don’t we educate students in high schools, colleges, or even younger kids with classes on illnesses and illness sensitivity training?

5. Don’t the ill and disabled have even more to teach than the healthy person, because they live with an even greater challenge than those of us living with a fully functional body?

6. Shouldn’t caregivers and carepartners receive a stipend or tax break for all that they do to take care of their loved ones plus keep them out of hospitals and nursing homes?

7. Why can’t we have a more progressive healthcare and insurance system that rewards proper nutrition and self-care with lower doctor bills and reduced insurance rates?

8. When are doctors going to come around and finally embrace complimentary therapies instead of the old cliché response, “Well, you can do it as long it doesn’t do any harm, I suppose.”?

9. Are we ever going to hear a doctor admit that he/she was ever wrong or made a mistake?

10. When is the medical community going to stop treating people with illnesses as someone who is incapable of making choices or knowledge of their own condition? Who is more knowledgeable of  illness, the person living with it on a daily basis, or the doctor trying to treat and maybe even cure it?

I would love to know what you think! Please send your comments and don’t forget to subscribe to get new postings, if you like my blog. I am happy to announce that Twitter account will be active in the next day or so, so please follow me on Twitter very soon!

Thanks for reading!

Parkinson’s Action Network (PAN) Meets in DC

Next Monday, hundreds of the United States’ most dynamic and involved advocates for the rights and issues affecting people with Parkinson’s Disease will convene in our Nation’s capital. The goal is to be heard and represented but mostly to be understood that we, as a collective force need better funding and services.

Neurological disorders are rising as is the aging population. Even more importantly, younger and younger people are receiving neurological related diagnoses that one might find in an older patient. Whether the cause is our growing toxic world and/or a genetic component that gets triggered or some cocktail of switches, a desperate portion of our population seeks a solution to a real problem that plagues them everyday, all-day.

In less than a century our country replaced vacuum tubes for Silica chips, went from the horse-drawn carriage to the space shuttle, put a man on the moon, and mapped the human genome. Where is the push to eradicate or even slow neurological illnesses? Great strides have been made in other diseases. New therapies and drugs, while slow to come, only slow or mask symptoms. It is time for a push and a unification of voices to be heard in DC and across the nation that more must be done.

The PAN advocates are coming to DC to speak for the countless victims, both directly and indirectly, touched or shaken by Parkinson’s Disease. They are speaking for those who are unable to speak for themselves.

To learn more about PAN and to view an online webcast of our symposium, go to www.parkinsonsaction.org.

A Danger In Profiling

Is Profiling Really Right?

I am worried! I’ll tell you why. The Transportation Security Agency (TSA), the people looking out for us at the airports and train stations are going to be profiling passengers. They are on the lookout for people that stand out in the crowd—people that move differently and may appear to be nervous, stutter, or seem to have something to hide.

Parkinson’s patients may fidget, tremor, or shake to and fro, at any time for any unknown reason. Stuttering, stammering, or broken speech can be part of the illness—does TSA know this? Who is training TSA about the thousands if not millions of people who travel with neurological disorders? If isn’t Parkinson’s, it could be one of the many other illnesses that calls attention to the patient. Stress and anxiety strike even the healthiest of the population at certain times of his or her lives—how does a TSA agent, someone unfamiliar and void of neurological conditions make the judgment to dismiss one person acting strangely over another to a traveler acting strangely due to a medical condition?

About 4 years ago, my wife and I were traveling to go to Florida. On this one occasion, I would take a walking stick that hikers use and can be adjusted to work as a monopod for stabilizing a camera. I decided it wouldn’t be a problem since the stick was retractable and very portable.

Security went smoothly, until I passed through the metal detector. I was fine, but the young woman scanning my carry-on and now, the stick, eyed it like she had never seen a walking stick before. Her perplexed expression confused my wife and me but we hoped that wasn’t going to last—it did. She called over a tall, pushy, young, man in his late 20’s to ask me what this was and to tell me how he was going to proceed to dismantle it in front of me. I immediately snapped back,

“If you break it, you buy it! It’s a simple spring-loaded walking stick! I have Parkinson’s disease and on occasion I find it helpful! Last week, the tension spring on the stick got stuck and it took me an hour to get it right and if you disassemble it, this thing will never work right!”

 To my amazement, the kid eyed me, eyed the stick, and handed it back to me. My outburst had paid off and we were free to be on our way.

Here is an example of our culture making life more difficult rather than easier. I understand the need for security on our planes, trains, ships, and highways, but I also think that those inspecting the cargo and passengers should have knowledge about what and who they are inspecting—don’t you?

If This Healthcare Bill Can Reduce Suffering, How Can It Be Bad?

By Karl Robb

 Before you read this you need to know that I  believe as an advocate for people with Parkinson’s disease it is important to defend and speak for those who are unable to defend or speak for themselves. On the afternoon of Sunday, March 21, 2010, at around 1:30 PM, a reporter from the New York Post phoned me and asked me to write 400-500 words on the healthcare reform bill that is being voted on very soon. The following is what I originally submitted. This is the unedited copy:

There is no telling what President Obama’s healthcare bill will bring. I do know something has got to be done to help the millions that go uninsured and are without access to healthcare.  As a small business owner and  someone who has lived with the chronic illness of Parkinson’s disease for over 20 years, I have watched my insurance rates soar. I have been forced to increase my deductible and increase my co-pay to bear the increased cost. 

I don’t know if a national healthcare plan will solve all of our nation’s health issues but I believe that it is a huge step in the right direction.  I have friends struggling to pay for their medications, stressing on how they are going to pay the doctor bill, and know caregivers considering declaring bankruptcy to pay for nursing home assistance. People suffering from an illness have enough to stress about without worrying whether their life-saving drug or treatment is covered. 

As much as this is an economic issue,  from a patient’s perspective, I see this even more from a humanitarian point of view. If this bill just slightly reduces the suffering of those Americans facing the crucial decision of having  to eat tonight or afford their medicines, then I think President Obama’s bill has merit. If this Bill helps someone with a pre-existing condition and who has no medical options but to suffer, how can this Bill be bad? If the Bill is going to help the National Institutes of Health (NIH) create more new grants for scientific discoveries, new drugs, and new therapies, I see great hope for ailing America.

I watched a disturbing video that showed those who were divided on this healthcare bill. In the video, a couple of irate men who were opposed to the Bill told a man with Parkinson’s disease that they weren’t paying for his healthcare or giving out “handouts”.  They further belittled the gentleman by throwing a couple of dollar bills at him as if they could go any lower.  Everyone is or will get ill at sometime in life.  The most compassionate and rational solution to preserve our country and our workforce is to preserve it by keeping it healthy with some government assistance. It seems only right.