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A Look At Young Onset Parkinson’s Disease

If your first experience with Parkinson’s disease (PD) was anything like mine, I went into a state of shock, disbelief, and a spiral of “what do I do now” syndrome. That was a long, long time ago, here in this galaxy, not so far away.

Since then, I have had almost 28 years to digest and understand (or at least try to) what it means to face the diagnosis of Parkinson’s disease. While in my very first neurological waiting room I found myself, a 23 year old, surrounded by much older patients in wheelchairs with various conditions. At the time, I, like most of the public was positive from all that I knew that only the elderly get Parkinson’s disease. A few years after my diagnosis, it was bittersweet reinforcement from Michael J. Fox’s release of diagnosis that Parkinson’s was not exclusive to those over the age of 60. I would like to think the world outside of the Parkinson’s community has a grasp on the nuances of our Illness, but I think I would be wrong.

Many are surprised that I was diagnosed so young despite that the face of Fox has largely become synonymous with this Illness. Both,

Fighting for right(and candy) at a young age!

Fighting for right(and candy) at a young age!

he and I and many others that I know are not anomalies. We are young and we are a growing segment of the population with Young Onset Parkinson’s disease.

At the time of my diagnosis, I was said to be in the rare two percentile of patients. Now, according to the Parkinson’s Disease Foundation (PDF) it is estimated four percent of people with PD are diagnosed before the age of 50. It is estimated that 60,000 new cases are diagnosed a year and somewhere between 1 million to 1.5 million people in the United States are living with it. The truth is, until data collection is put in place, all these numbers are sheer speculation. To learn more about data collection for Parkinson’s disease and what you can do go to http://parkinsonsaction.org/our-work/data-collection/.

Neurological disorders largely remain a mystery mainly due to the sheer complexities of the human brain. Better government funding, a drive for expediency, better institutional sharing and cooperation about data, and a public outcry that urgency is required right now must be reiterated over and over.

What Does A “Cure” Mean?

What does a cure mean to you? Does it mean stopping the illness dead where it is or does it mean a complete elimination of the illness totally and completely?

These questions are not easily answered and are a puzzle for patients, researchers, doctors, and most of the rest of those involved in the Parkinson’s disease community. I have pondered the question for some time now and think I may have a realistic idea of what may be a fair idea of a cure.

My perception of a cure, at this stage of my life, is a treatment or medication that halts disease progression and at least minimizes symptoms of illness with no side effects or bodily harm. To this date, the closest thing to my definition is the power of Reiki, Yoga, Meditation, Vegetarian Diet,Medication Management and Reducing Stress. It has taken me years to find what works for me. I believe that we  must find what works best for ourselves (avoiding anything harmful) through self discovery and the help of our doctors. What will work for some may not work for others. We are all unique and different. Keep an open mind. I’d like to think that we can all find the “cure” that we seek.

That’s my take on it.

I just watched Michael J. Fox’s interview with Diane Sawyer. While I can’t say that I agree 100 percent with everything he says in the interview, I will say, I agree with his optimism and strongly suggest that finding the positives in your life and not focusing on the negatives will make life more enjoyable.  Here is the interview: http://abcnews.go.com/blogs/health/2012/05/18/michael-j-fox-looks-past-stem-cells-in-search-for-parkinsons-cure/

On Freddie Roach–Insight

The HBO series is what appears to be a candid slice of Freddie’s whirlwind on the go lifestyle. The life of a hugely successful trainer and gym owner, Freddie Roach has neared the pinnacle of the boxing world with numerous champions, but none more than 8 time world champion, Manny Pacquiao.

Roach is so revered in the Philippines, homeland of Pacquiao, that he has achieved celebrity status. Cadres of young women flock around him and men want to meet him, congratulate him, or get his autograph. He is without a doubt, a star. Roach is the third most famous celebrity in the Philippines, only behind Pacquiao and the Country’s leader. He is a boxing legend, but at what cost?

The series reveals bits and pieces of the man and his decisions. If you read between the lines and listen to Roach’s slurred and broken speech, you hear some regret, fear, loss, sadness, and even a touch of anger.  

Boxing has given him success in the sport, but, again, at what cost?  Roach’s current and ex-girlfriends make appearances on the show, leaving the viewer wondering how many relationships has boxing cost this man?

Freddie Roach is a true inspiration and an American success story. He fought his way out of poverty and the projects. His toughness and enduring focus on a goal propelled him to being the best ever.

Even with Parkinson’s Disease, at 52, to see Roach training in the ring, he functions incredibly well and speaks clearer inside the ring than he does outside. When someone with  Parkinson’s is doing what they love and what they excel at, it is easy for them to fall into a zone where he or she almost forgets about their symptoms. I see this in Freddie. His laser-like focus and commitment to his task at hand overcomes the illness while doing his job and what he loves.

On Freddie Roach is a raw and insightful look into Freddie’s taxing schedule, grueling  physical expectations, and the toll that it may be taking on both his body and mind. Roach shows true courage by sharing his life and challenges with Parkinson’s. He pulls back the curtain and sheds light on what Parkinson’s is and what it does. For this, I thank and applaud both Roach and HBO for this important exposure. Bravo!

Freedom

As we end the celebration of the 4th of July and the founding of our great nation, I thought it to be appropriate to discuss, freedom. There is no doubt that Parkinson’s disease or any other illness robs one o f their independence and freedom. Parkinson’s can make you less sure of your balance, endurance,  and/or cognitive ability. Part of living with an illness is accepting help, if needed, but to try to remain as independent as you possibly are able.

As someone who has had Parkinson’s disease for over 25 years, I can assure you that the most beneficial  action that you can make in your life is to take charge and get as healthy as you can. Here are some suggestions that have worked for me and may work for you:

  • Stay active, be it yoga, walking, weights, or swimming–do something.
  • If your speech needs help, look into finding a certified LSVT therapist to help you.
  • Consider improving your digestion with a probiotic.
  • Eat vegetarian or as low on the food chain as you can.
  • Reduce your stress level through meditation.
  • Keep your mind active and challenged.
  • Avoid potent cleaning supplies, processed foods, and artificial odor products like cheap candles with infused odors that may cause headaches or worse.

 These are just a few ways to possibly help you to regain some of your freedom and take back your life.  You should discuss any changes with your doctor before making any major changes in your daily  regimen. I am not a doctor. I’m just a guy telling you what works for me and hope that it might work for you too. What works for you?

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.

Michael J. Fox Interview w/ Sanjay Gupta Was Excellent!

If you missed it, there are portions from last night’s inspirational interview with Michael J. Fox about his Parkinson’s  Disease (PD) on YouTube. I am hoping that the Fox Foundation will have the entire interview on their site at http://www.michaeljfox.org. The interview was by far the most candid, poignant, philosophical, in-depth, investigation of Michael’s fervor for life and a cure that I have seen. I always respected, appreciated, and knew about his dedication to curing PD, but it this interview was one of his best, in my humble opinion. I found his spirit and passion to be invigorating and contagious.

As someone with PD, I identify with Michael: both of us are not too far apart in age (he is almost 6 years older), both of us were diagnosed in our 20’s, both of us get dyskinetic when we are stressed (like interviews) and both of us are trying to make a difference in the world of Parkinson’s.  I identify and completely support and respect the mission and inspiration of Michael J. Fox and his foundation’s work. I encourage you to support the work that they are doing financially or through their Team Fox fundraising events. Go to his site for more information and get on his foundation’s  mailing list. I hope that you will share this information with others and educate them about PD.

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