It’s A Fast-Paced World

We live in a world of faster is better: food-service, information and news, data/technology, and most everything else. In a society expecting speed and instant gratification, someone with Parkinson’s disease (PD) or any neurological disorder is at a distinct disadvantage. When time is considered money and faster is better, the individual with PD suffers because he or she may lack the ability to move into fifth gear. What the person with PD does receive is the opportunity and challenge of learning true patience and the ability to learn to live in the moment.

Part of living with PD is the act of acceptance. This does not mean that you don’t continue to seek bettering yourself and finding therapies, but it means accepting that you are different and finding comfort in your own skin.  Finding the balance in one’s life is a constant challenge. When illness is involved, if not put into perspective, can compound the stress and anxiety of basic daily living.

Coming to grips with your illness may take time and effort. In many cases it may seem impossible, but it isn’t. Seek out the part of you that is able to navigate the inner workings of your mind, body, and soul (spirit) to realize that this is a challenge, but one that you can meet. We are stronger and more capable than we know. Adversity can bring out the very best in us and release strengths that we forgot we ever had. Part of accepting an illness is keeping up the necessary search for relief and bettering oneself through proper nutrition, exercise,  medical care, good drug management, and willingness to explore non-invasive complimentary therapies that may potentially improve one’s condition. An open and flexible mind may serve you well in seeking answers and solutions concerning your condition.

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/

The Davis Phinney Richmond, VA Victory Summit – A Success!

Last Saturday, I had the privilege to attend and share some of what I have learned in my living with Parkinson’s disease for over 25 years. The Davis Phinney Foundation’s Victory Summit in Richmond, Virginia brought  together 500 or more people with Parkinson’s disease, their carepartners, and medical experts from around the nation to discuss research and how to live better with this illness. The Event, both inspiring and educational, felt more like a close-knit family and less of a conference event. Having attended many Parkinson’s related events over my many years with this disease, I can tell you that the Phinney Victory Summit is a truly empowering and uplifting experience that educates and inspires its’ attendees. I highly suggest that if you or someone you love has Parkinson’s, that you look into coming to the next one.

The next Summit is in Pittsburgh on September 15, 2012. For more information, go to www.davisphinneyfoundation.org.

Motherhood at it’s best!

Happy Mother’s Day!

Exclusive Interview With Davis Phinney

Davis Phinney knows how to inspire an audience! I have had the privilege of seeing and hearing him speak on his dealing with early onset Parkinson’s disease several times. Davis is an Olympic Bronze Medal winner in cycling. He has achieved more wins – 328 victories in all – than any other US Cyclist.

The insight of Davis’ perspective is truly inspiring and a great way to begin Parkinson’s Disease Awareness Month. I hope that you enjoy this interview and will share it with others facing Parkinson’s.

I want to thank Davis and everyone at The Davis Phinney Foundation for allowing me this opportunity. What a great way to begin Parkinson’s Disease Awareness Month. I encourage you to learn more about Davis’ Foundation and the upcoming Victory Summit in Richmond, Virginia on May 19th, 2012.

1. How has PD changed the way you view life?

PD has had a significant effect on me – on my view of life and my place in it. I am much less likely to take things for granted than I used to be, and I’m much more ‘present’ for, and appreciative of, positive aspects to any given day.

2. What has PD taught you that you didn’t know before your symptoms?

It has taught me much about living with disability and disease that I wouldn’t have otherwise learned – and that has led to greater awareness, understanding and empathy – which I view as very positive and grounding.

3. What is your advice to newly diagnosed PD patients?

My advice would be to immediately check out the Every Victory Counts (EVC) manual! being newly diagnosed with this disease, one faces an uncertain frontier, and there may not be a full spectrum of resources or the right resources immediately at hand. We work hard to keep the information in the EVC manual relevant and highly applicable – and based on highly positive feedback from the Parkinson’s tribe – we’re filling a void.  So EVC is a good starting point as well as accessing the local Parkinson’s community for resources, support and connections available in the immediate community.

4. What do you do on a daily basis to fight your Parkinson’s disease?

I start each day with a smile in the mirror an affirmation stating my intention that this is going to be a good day.  I make it a priority to eat well (but not obsessively), take pictures, engage people in conversation and relish in the little victories; a good cup of coffee, a laugh out loud moment, an inspired sunset, etc.

In an active way I engage myself physically whether it’s through yoga, hiking, walking or cycling around town.  Getting outside and breathing and moving is a big key for me, but I feel some form of daily exercise, while good for anyone, is crucial for those of us living with Parkinson’s.

5. How do you think sports and teamwork helped prepare you for dealing with Parkinson’s?

Great question. The way I relate my athletic background in dealing with Parkinson’s is to give myself goals that are not unlike what I did when I was competing, but instead of focusing on winning bike races my focus is on enhancing my daily quality of life.  That’s the goal; to make today better – and in so doing, I setup tomorrow for success and the day after and so on. With PD, it helps tremendously to be self-sensitive, to have self-awareness, to ask the question: ‘how’s this medicine affecting me?’ for example. Athletes are usually instilled with this awareness, so that’s a plus.

As regards teamwork, we are not living with this disease singularly. There are (hopefully) caregivers around us (spouse, family, therapists, doctors), whom you are reliant on. By doing what you can to help yourself, you set a good example for the team and are in a better position to ‘marshal your forces’! Creating a good team is vital to managing this disease.

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.

Calming Of Nature

8 Tips That Could Save A Parkinson’s Disease Patient’s Life (or at least reduce severe injury)

1. Take the elevator and not the escalator! If you have balance issues, a hard dramatic fall is the last thing that you need to deal with–especially if you can avoid it.

2. It can be very easy to forget your meds or even take a double dose if you aren’t vigilant about your dosing. Keep a journal or daily dosing sheet.

3. St. John’s Wort, Kava kava,  and cold medicine products like, Dextromethorphan (contained in many over-the-counter cough medicines), may have severe side-effects. Check your packaging and the Web. This is not a medical website, so go to a medical site like www.webmd.com for the details. Read  your labels –especially on cold medicines.

4. Giving up the car keys is one of the hardest decisions that you will ever have to make! You don’t want to harm yourself but even more, you don’t want to hurt someone else. Be smart about when it is time to seek alternative transportation. It isn’t easy,  but you might just be saving many lives by relinquishing those keys! (See #8)

5. Stay out of the hospital as much as possible. If you have to–well—then you have to–but if you are choosing cosmetic surgery or any kind of surgery that isn’t totally necessary, consider avoiding the risk of the blade and anesthesia. Don’t tax your system more than you have to.

6. Limit your sun exposure, especially if you are on Parkinson’s meds. Eat your organic leafy greens to get your vitamin D and even dairy, but not too much direct sun–or dairy.

7. Monitor your stress, blood pressure, and sleep. They can all be related. Diet may play a factor as well. If you don’t have a home blood pressure monitor, you might consider picking one up on the web or your local drugstore. If you track it a few weeks before your next doctor visit, you can compare yours with the doctor’s reading.

8. In some States, telemedicine (doctor visits by Skype or camera/video programs) is becoming a reality that saves time, money, and travel. Ask your physician, Neurologist, or even local hospital if they have any kind of program that might work for you to be seen without being seen in the office.

Hey–I am Not a doctor (not that the money wouldn’t be nice and boy would my parents be proud). I’m just a guy with PD and a blog. If you like it, please share it with a friend. If you don’t like it, please share it with 2 or more friends.

This is not professional medical advice–it is my opinion from living with PD for over 25 years. Thanks for reading!  Join me on Twitter @asoftvoicepd

On Freddie Roach Airs January 20th!

Starting  January 20,2012, HBO Sports presents the first episode of a 6 part series called On Freddie Roach. If you don’t know boxing or Parkinson’s Disease, Freddie Roach is a successful  former  lightweight boxer and one of the greatest trainers  of all-time. Roach has trained  Mike Tyson, Oscar De La Hoya, and Manny Pacquiao, just to name a few. 28 of his boxers  have become world champions.

A few years ago, Roach was diagnosed with PD, but it hasn’t slowed him down and he continues  to keep his bevy of fighters winning. He is a force of determination, drive, and inspiration.  

I can’t wait! Thank you, HBO!  

Here is a recent New York Times interview with Mr. Roach.