Category Archives: Politics

Understanding Parkinson’s!

Faces of PD

Parkinson’s Disease (PD) knows no boundaries, when it comes to age.  Young, middle aged, or older, we are all susceptible to the throws of this illness. Parkinson’s is a complex illness that is still not fully understood as to why one person may get the disease but others do not. It may be that PD is actually  more than one disease, under a dome of many.

I don’t know that there is making any sense of this illness. The diversity of symptoms and effective medicines vary so much that it is rare, if ever that two patients share the same symptoms or find the same benefit from a similar regimen.

Unraveling the complexities of this mysterious illness or illnesses continues to be a challenge for medical science. New discoveries may require a new and less conventional methodology for explaining this most elusive and cunning illness.

Our Health Is On The Line!

Future Health?

Future Health?

In just over a month, the United States of America chooses a new leader. One wants to repeal the Affordable Care Act (ACA) and the other supports providing insurance to those who had none. One said they heard terrible things about the National Institutes of Health (NIH) and the other will support funding research. One denies climate change and the other has concern about the global impact that it does, and will have on our planet.

As someone with Parkinson’s disease, I want a leader who will move science ahead, take a hard look at research for all illnesses, and  expedite funding for promising studies. This really hasn’t been a topic that has been thoroughly discussed by either candidate.

Our health is on the line and the decision of our next President will play a huge role in our  future health, on so many levels.

Happy Earth Day!

Be kind to the Planet and it’s creatures, today and everyday. Here is something that I wrote awhile ago but never shared. Feel free to pass it on to others:

Power of Nature

Power of Nature

A Prayer for the Planet

May those living in fear, sadness, and pain be relieved of their continuous agony.
May the voiceless children and animals of this planet be heard and helped.
May the environment be aided, cleansed and respected.
May violent abusers, bullies, hate mongers, and racists be enlightened of their wrongful nature.
May we salvage sanity, compassion, and love.
May clean air, water and food be free of pollution.
May mankind invest in cleaner energy solutions.
May government do its duty in serving its people.
May we endeavor to cure the ills.
May kindness be more valuable than money.
May war be stricken from the planet.
May we accept others unlike ourselves.
May we have the strength, determination and character to make just one of these changes.

Writing and Photo by Karl Robb

Copyright 2016 Karl Robb

No Holiday For Parkinson’s Awareness

PD Tulip

PD Tulip

April has been proclaimed to be Parkinson’s Awareness Month, but just how aware are we really of Parkinson’s disease?

Those of us living with the illness as well as our care partners, caregivers, and close relatives, are all well aware of the physical, the mental, and the spiritual toll that Parkinson’s can take.  Unless you live with the disease on a daily basis, it is difficult to comprehend the wide range of symptoms, drug side-effects, and varying degrees of overall health issues that are truly Parkinson’s related—but I ask, how much real awareness is there of this disease?

Just getting a diagnosis with Parkinson’s can be an arduous endeavor.  The journey with Parkinson’s is riddled with unknowns that neither scientists nor neurologists can explain, at this time.  Dedication to unraveling the mystery of our gray matter is crucial to ending all neurological disorders.

In 2017, the bicentennial of James Parkinson’s observations and discoveries will be recognized. If you look at the landscape of successes in battling this illness, for all the time, money, and attempts at awareness, there is so much need that is left unmet. After all this time, there is still so little known about this elusive condition.

Maybe, spreading awareness and information, when at all possible is a key.  Consider sharing your story with the uninitiated and those who are unfamiliar with Parkinson’s, for this offers an opportunity to demystify an illness that is so unique for each individual. Let’s not limit Parkinson’s awareness to just 30 days!

My Wife-Angela Robb, Recognized As A Champion of Change!

UPDATE!

Just in case you missed it, here is the video link to the Champions of Change for Parkinson’s disease.

The event was held at the White House.

Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney.

White House Champions of Change for Parkinson's Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney
Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney

 

What a smile! Angela Robb A Champion of Change!

What a smile! Angela Robb A Champion of Change!

As we near April and Parkinson’s Disease Awareness Month, I would like to publicly thank and recognize the carepartners and caregivers who make our lives better. The carepartner/caregiver can be a tiring and sometimes thankless task.

To my wife, best friend, partner, carepartner, and true love, Angela, I congratulate you on being honored and recognized at the White House as a Champion of Change. I am so proud of you –today and everyday! I am so grateful to be in this life with you by my side! I am so happy that everyone, besides me, sees just how amazing you are!

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

PD Awareness Symbol
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.
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