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5 Tips Parkinson’s Patients Should Know

Nutrition matters

Summer color and flavor

Last week, I had the opportunity to speak to a wonderful audience with Parkinson’s and their care partners, in eastern Virginia. It was a marvelous exchange of information and emotions. Parkinson’s disease comes with so many unwritten rules. Trying to find all that you need to know about this illness, all in one place, may be frustrating to collect. There is so much to remember and so much that you might forget. Staying on top of Parkinson’s disease, symptoms, medications, and health maintenance, is a full-time job!

The following are 5 pieces of knowledge that you will want to remember:

  1. Is your neurologist a movement disorder specialist? If you have Parkinson’s disease and your neurologist isn’t a movement disorder specialist, you may want to see if there is one in your area. Movement Disorder Specialists complete extended training to focus on neurological disorders like Parkinson’s disease.

  2. If you are taking antibiotics, your medication’s effectiveness may be hindered dramatically. I can speak from experience that after taking antibiotics for my tooth infection, I saw a huge decline in the efficacy of my daily regimen of Parkinson’s medications.

  3. Don’t forget that if you are on Sinemet and you are protein-sensitive (protein in your diet may interact with your Levodopa), protein may decrease the full benefit of your dose. You may want try taking your protein later in the day or evening. Timing your medications for optimal benefit is part science, part art, and part luck.

  4. When I am able to lower my stress level, I have found that medications work better, I feel calmer and more peaceful, and see less of my symptoms.

  5. Eat smart and healthy! Talk to your doctor about how to improve your gut health.

It’s not all in your head–is it?

It might all be connected.In the near 200 years, since the discovery of Parkinson’s Disease (PD), the theories of how, where, when, and why the illness develops varies over time. Science is proving and re-enforcing the belief that everything is connected. When I was officially diagnosed in 1991 with PD, there were only a few doctors who pondered the connection between the gut and the brain. Now, there seems to be a much larger contingent who agree that our gut plays a major factor in our brain function.

The body has a mysterious way of masking itself or maybe it is just due to the complexity of the brain. For several years, my right shoulder rotator cuff hurt and I was unable to find long-lasting relief or an answer to where the pain was coming from. I had seen doctors, taken X-rays, seen massage therapists, and done physical therapy, and all proved to do little, over time. I was sure the pain resided in the shoulder. I was wrong.

I had to go all the way across the United States to find relief. A knowledgeable and very intuitive massage therapist who really paid attention to my arm discovered a very sore spot close to the mid point of my upper arm. Once she released the extreme pain that had been stored in that one spot, the pain in my shoulder dispersed. I would call the results near miraculous. She found the cause of my pain where no one had even thought of looking.

I think that this is sound evidence that there is just so much about the systems of the human body that we just can’t understand, just yet. Over time, new discoveries and breakthroughs may very well reveal astounding relationships between our systems or even unveil how our bodies process certain chemicals and alter our central nervous system. Until the day comes that modern science is capable of unveiling an all encompassing cure, it is our responsibility for exploring our own systemic connections, the roles that stress and anxiety play in our lives, our diets, our sleep patterns, and even how we think, feel, and react.

Our mind, body, and spirit depend upon one another. Maintaining that delicate balance is the key to our health. Finding the missing pieces that might lead us to fulfill the balance may require exploration and investigation outside our comfort zone and even that of our complete understanding. What I thought originated in my shoulder was actually being manipulated by a sore spot in my upper arm, a spot about a half a foot away. Looking closely at ourselves, with a fresh lens can reveal a great deal.

Out of Control

Out Of ControlParkinson’s Disease agonist medications (Requip and Mirapex) have been shown to cause compulsive behavior for some users. Some users have been shown to be prone to gambling addiction, sex addiction, shopping addiction, food addiction, and gaming addiction may occur. Compulsion may even entice users to go beyond legal limits to feed their desire or lose sense of time.

If you find yourself facing any kind of compulsive behavior that may be taking you away from friends and family, or is disrupting your life, tell your neurologist and someone close to you about breaking the cycle. Communication is so vital to your well-being. Carrying secrets only fuels the tension and stress on the mind and body. Letting go and making a change (with your neurologist’s help) might just be the right move forward.

10 Holiday Suggestions For Those Dealing With Parkinson’s Disease

Christmas Lights

Christmas Lights

The Holiday Season means parties, presents, parents, and packing on pounds. It is a special time when family comes together to share the joy and celebration. This time of year can also be difficult and trying for many people due to finances, loss of family members, or just trying to coordinate the added responsibility that comes with this time of year.

The added pressure of trying to produce “the right gift” and to cook “the right meal” on top of dealing with your Parkinson’s disease probably isn’t of benefit to your condition. I know from experience, that when I am overloaded with a laundry list of to-do items and I am facing deadlines, stress and tension builds higher and higher – only to make my PD worsen.

Here are a few suggestions to remind you how to maintain your meds, your mind, and your overall well-being over the holidays:

  1. Travel can interject a scramble in timing your medications on an irregular schedule and for people with Parkinson’s, timing can be everything. Do your best to sustain as close to your usual schedule as you can to maintain an even stream of your medications. If you need a reminder, use your cell phone or your spouse’s phone to make sure that you don’t miss a dose.
  2. The Holidays bring on huge changes in our eating habits as we eat and drink more, often of foods that we may not eat at other times of the year. Sweets, pastries, and other rich foods can play a part in reducing your maximum absorption of your medications, so pay attention to what you are eating and how much of it you intake. I find alcohol fiddles with my pills, so I try to not drink at all, but if you do, just pay attention to the impact it may have on what you are taking.
  3. It can become overwhelming when we have multiple family members from multiple families, kids, animals, music, technology, and food and drink, and loud conversation, all in one room. The energy and space can become overwhelming and feel a little enclosing. We all have different stress triggers that evoke our symptoms to come out more. Be aware what induces certain thoughts and feelings, before the trigger takes hold, if you can. The key is being aware of the situation that you are in at the time.
  4. Be sure and take time for yourself, when you need it! Everyone at the party and celebration wants you to be at your best and if it means you need to take a little extra time to get ready, ask for a change in food or drink, take a rest, or need to lower the music to be heard better in conversation, I would think that those slight concessions would gladly be made for you.
  5. Remember to breathe, breathe, breathe! Deep breathing is something very few of us do enough. It feels so good to breath deeply.
  6. Go into each event expecting to have a good time and to really enjoy yourself. Keep your expectations in check and just be present.
  7. Stay as active as you normally would on any other day. Keep on your normal health regimen of exercise, sleep, and diet (as best you can) to keep up daily maintenance.
  8. Address your needs to speak of those you have lost or miss if you can, without interfering with those who may not want to deal with past issues. I like to just light a candle in remembrance of those who are unable t be with us, as this is a way of honoring their memory.
  9. If stress creeps in and you need something, check out my last blog post on the program, HeadSpace and see if this App does’t help clear some tension and anxiety.
  10. Lastly, this time of year should be about whatever you want it to be. Placing expectations and conditions on what you hope or think it should be, only weighs you down. If you build up expectations, it can lead to less successful outcomes. Just being as good as you can be at the time of the event, and being yourself, without expectation, may just allow you to find that you enjoy all your events, even more!

Merry Christmas and Happy New Year!

Organic Matters

I tweeted a story this morning that claimed studies prove that organic foods only real benefit is that they are lower in pesticides. As someone with young-onset Parkinson’s disease (PD) and knowing that studies show that PD results from exposure  to pesticides, I would think the article would be far more pro-organic than it appears.

  http://www.bbc.co.uk/news/health-19465692

If you can reduce your exposure to any toxin, do it! Do you think organic prices are worth reduced pesticide exposure ?

I’d like to know what you think. Please read the article above and share your thoughts on organic versus conventional farming.

Summer Color

Summer color and flavor

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/

What do we know about our food?

Unless you grow your own food, how much can you account for that plant’s purity? But wait, there’s more–is your plant (GMO) genetically modified? Do you even know? How can you know for certain?

Technical advances and food production have made supposed advances and modifications, but at what cost to the consumer? Food packaging has more information than ever and yet it takes a chemical engineer or an hour on Google to decipher the preservatives, gums, fillers, sugar substitutes, or anything that may be artificially infused. More information is better as long as the data is understandable, pertinent, and accurate.

Wouldn’t it be nice if our food history were posted on our packaging? The package would tell us when the veggies were picked, how long it took them to get to market, and if they were sprayed with any kind of pesticide, i.e. Roundup (which studies since 2003 have been saying may lead to Parkinson’s Disease)? Eating organic is probably the healthiest of our options but unless we grew it ourselves, what assures us that our fruits and veggies are untainted?

Something to ponder, today.

Motherhood at it’s best!

Motherhood at it's best!

Happy Mother’s Day!

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