Category Archives: Medications

Remembering 2016!

2017! The Parkinson’s Disease (PD) Community lost 2 of its best known iconic figures in 2016. The most recognizable figure on the planet, the boxing legend and humanitarian, Mohamed Ali and Janet Reno, the first  US female Attorney General. Thanks to both of them for their awareness and advocacy in spreading the word on PD and the importance of educating the public, our government, and the medical world. They were very public faces who helped to express the needs of this community.

This year I have been to far too many funerals of dear friends who have succumbed to the symptoms of PD. It is a tragic reality– one, that I dread sharing with you.

It is my hope for 2017, that we see more cooperation from all parties involved in drug manufacturing, drug regulation, and drug research to lead to some understanding of just how our brains work. Someone, somewhere, sometime in the not so distant future is going to recognize a common element or link that may very well break open the mystery of Parkinson’s disease. Until that very special day, when the brain reveals itself, it is our duty to ourselves and our loved ones, to do all that we can for ourselves and our conditions.

I wish all of you, my friends and readers, a very healthy and happy New Year!

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!

FDA Reaches Out To Learn More On Those With Parkinson’s Disease

Yesterday, I had the honor and privilege of testifying in front of the United States Food and Drug Administration (FDA), about symptoms of Parkinson’s and how they impact daily living. The event brought out at least 20 or more of the FDA’s neurological specialists and decision makers. I watched as they listened to my fellow panelists testify about their struggles with Parkinson’s disease and many took copious notes about what was said.

A good day at the FDA!

A good day at the FDA!

I am confident that they were listening to the plights of those of us facing a variety of issues related to our illness. It is my sincere hope and plea that something positive, like an ongoing dialogue between FDA and patient, or even a rapid push for speedier development of therapies is implemented. It is encouraging and wonderful to see interest from the FDA and the Parkinson’s community. This can be nothing but positive and hopeful!

Why Did The Medication Stop Working So Fast–The Antibiotic Dilemma

When my medications turned off immediately for no apparent reason, I was befuddled and beyond worried. Not long ago a good friend experienced the same perplexing event with no medical forewarning. I saw an increase in balance issues, a reduction in drug benefit, and it took a longer time for to receive any benefit from my Parkinson’s disease medications.

Be aware of what might be interfering with your medications..

Be aware of what might be interfering with your medications.

It is a topic that I have seen no discussion on and yet to hear any doctor or patient bring to light. That most elusive of topics is the inclusion of antibiotics and the whirlwind of turmoil that can come with it.

Antibiotics disrupt the balance of our stomachs and the important enzymes for healthy digestion. They wipe out both the good and bad stuff in your gut, thus causing problems with the stability of your medications. As we all know, without absorption through the blood-brain barrier Levodopa and other medications lose their potency and overall efficacy.

So, the next time your physician wants to talk about putting you on an antibiotic for a toothache, infection, or anything that crops up, discuss with your doctor what the potential  side-effects might do to your Parkinson’s disease drugs and know what you may be facing. The antibiotics may be needed, just be prepared and consider a good probiotic to replace those digestive juices.

I am not a doctor and this is not medical advice. This is personal opinion and my events. Discuss this with your doctor before you make any changes. Share your stories with me and my readers, if you like. I will share your stories.

Laughing feels good–but does more!

Laughter, giggles, chuckles, guffaws, and smiles are powerful tools for us to help ourselves–I hope the creation below does one of those for you!

 

Don't forget to laaaaaaaaaaaaaugh!

Don’t forget to laaaaaaaaaaaaaugh!

What Is It Going To Take?

I am quickly nearing the age of 50. To many of you reading this, 50 isn’t old. I don’t consider 50 old either, but I have had Parkinson’s disease since age 17, and that means I’ve had it for a long time.

When I was given my diagnosis at the age of 23, I was told by several people in the PD community that I would see a cure in 5 or at least 10 years. A quarter of a century later, I didn’t expect a cure but I had hoped science had developed better drugs, therapies, and that hospitals and retirement homes would have better understandings of how to care for people with this disease.

What is it going to take for the world to understand Parkinson’s disease? What is it going to take to develop new drugs with fewer side-effects? What is it going to take to get Parkinson’s disease seen as an illness that needs assistance, right NOW!

As we near the end of Summer & Fall PD Educational Events

I recently had the opportunity to express my thoughts about the tragic death of Robin Williams for the good folks at The New Republic. I’m happy to say and thank you all for receiving it so well. If you missed it, and would like to take a look at it, here’s the link: http://www.newrepublic.com/article/119108/robin-williams-death-was-great-loss-parkinsons-awareness

I have to hand it to the ALS Association on a brilliantly executed social and fundraising campaign in their “The ALS Ice Bucket Challenge” campaign. I tip my hat to the viral fervor and momentum that has spread so fast. Raising $80 million dollars in just a matter of months sets an example and is a challenge, that few organizations can match or achieve.

In June, I was fortunate to have attended the Partners in Parkinson’s (PiP) event in NYC, put on by the Michael J Fox Foundation,  Abbvie, and The Davis Phinney Foundation. It was a day of education and learning to live well with Parkinson’s. I’m honored to be the co-ambassador for the Partners in Parkinson’s event in Washington, DC on October 12th at the Washington Hilton. If you are dealing with Parkinson’s and can join us, I encourage you to learn more about this event. The event is free. To learn more and register online visit: https://www.partnersinparkinsons.org/attend-an-event

Please share this information with friends and your support group members.

There’s a whole host of Parkinson’s educational events coming up this fall. I encourage you to add these to your calendar. Here’s a listing of some of the ones I’m aware of:

September 10 – December 10
Therapy Matters
Hampton Roads APDA Chapter
Click this link to view the brochure for the series speakers and titles –http://hrparkinsons.com/events/fall-2014-therapy-matters/

A series focused on the diversity and impact of therapies for neurological conditions. To RSVP for one or the entire series of sessions, please call 757-495-4211 or visit http://ourladyperpetualhelp.com/happenings
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Saturday, September 13, 2014
Caring for Parkinson’s, Caring for YOU – Parkinson’s Symposium
Parkinson Association of the Carolinas
9:30am – 1:00pm
Calvary Church, Crown Room, 5801 Pineville-Matthews Road, Charlotte, NC 28226

This is a FREE educational symposium with keynote speaker, Dr. Danielle Englert, a movement disorder specialist with Carolinas Center for Parkinson’s Disease and Movement Disorders.

For more information, visit: http://www.parkinsonassociation.org/events/symposium/
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Saturday, September 13, 2014
SING OUT!
2:00 P.M.
The Heights Baptist Church, 201 W. Renner Road, Richardson, Texas 75080

Join us for a family-fun performance by The LOUD Crowd from the Parkinson Voice Project. Enjoy 1960s music, along with the endearing antics of Lamb Chop and Mallory Lewis, the daughter of Shari Lewis, who first introduced the charming sock puppet.

FOR RESERVATIONS CALL 469-375-6500
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Wednesday, October 1
Morris K. Udall Awards Dinner
Parkinson’s Action Network
Washington DC

Join the Parkinson’s Action Network (PAN) and the Parkinson’s community for the Morris K. Udall Awards Dinner in Washington, DC on Wednesday, October 1.

PAN will present Rep. Henry Waxman (D-CA) with the Morris K. Udall Award for Public Service and Israel Robledo, Texas State Director, with the Milly Kondracke Award for Outstanding Advocacy. In addition to the award presentations, there will be a red carpet reception with on-camera interviews and entertainment. The highlight of the event will be a special guest in a
one-on-one interview with good friend of PAN and recent National Humanities Medal Awardee Diane Rehm.

To learn more or purchase tickets, contact Christopher Vance at cvance@parkinsonsaction.org or 202-638-4101 x108 or
visit the PAN website for more information.
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Saturday October 11, 2014
2014 Richmond Parkinson’s Disease Community Education Day
8:00 AM – 3:30 PM
Mount Vernon Baptist Church, 11220 Nuckols Road, Glen Allen, VA 23059

Sponsored by: Virginia Commonwealth University Parkinson’s Disease and Movement Disorders Center, University of Virginia Parkinson’s Disease Center, APDA Richmond Metro, and Richmond PADRECC

People with Parkinson’s disease (PD), their family and friends, or anyone interested in learning more about PD are invited to the annual Parkinson’s Community Education Day.

Registration is $25 per person and includes continental breakfast, lunch & afternoon refreshments.

General sessions include:
Integrative Medicine – Dr. Monique Giroux, DBS & Quality of Life – Dr. Kathryn Holloway, Nutrition – Dr. Marian Evatt
Break out session offerings:
Exercise – Dr. Jeff Hoder, Video Game Research – Dr. Ben Herz,, Caregiver/Care Partner Challenges, PD 101

Visit the conference website for a full agenda, hotel accommodation rates and location information. http://events.r20.constantcontact.com/register/event?oeidk=a07e9en180b79579468&llr=6gtnvbkab
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Sunday, October 12, 8:00 AM – 4:00 PM
Partners in Parkinson’s – Washington DC
Washington Hilton, 1919 Connecticut Ave NW, Washington, D.C. 20009

Partners in Parkinson’s (PiP) is a free educational event for people with Parkinson’s and their families by the Michael J Fox Foundation for Parkinson’s Research. Breakfast and lunch will be provided. The program features presentations and panel discussions with local Parkinson’s specialists, research experts and patient panelists. It also includes a resource fair to connect attendees with local support groups, clinical sites, allied healthcare providers, and more. For more information or to register, visit www.partnersinparkinsons.org .

There are also PiP events in Atlanta 9/13, Boston 9/20, Philadelphia 10/18, Chicago 11/1, Denver 11/8, and Los Angeles 12/6.
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Saturday, November 8, 2014
Johns Hopkins Movement Disorders Symposium
8:30 a.m. – 3:30 p.m.
BWI Airport Marriott
1743 W. Nursery Rd
Linthicum, MD 21090

Register today to learn more about the latest in the management of movement disorders from experts at Johns Hopkins Medicine and other health organizations in Maryland.

Contact: Bailey Vernon, 410-616-2811to learn more or to register. Or visit this website for an agenda and brochure for the event.
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November 13 – 16, 2014
The Victory Summit® Symposium and Parkinson’s Community Weekend
Greenville-Spartanburg, South Carolina

Visit the Davis Phinney Foundation website to register for The Victory Summit
 and visit this page  for a detailed schedule of the weekend’s events!

Let me hear from you!

I want to know if you have questions, comments, or suggestions for upcoming posts. Are there specific topics related to Parkinson’s that you want me to write about?

Check  out the National Parkinson Foundation’s (NPF) new First Connect My Page program site and register. I recently wrote 4 articles for the project. Go to the NPF site for more information.

If you’ve read my book, A Soft Voice In A Noisy World : A Guide To Dealing and Healing with Parkinson’s Disease, please consider this:

  • If you enjoyed reading my book, please review it on one or more of these sites: Amazon, Barnes and Noble, GoodReads, Smashwords, Kobo,Google Books, or any other site you frequent or feel would be a good place to promote the book.
  • Please tell your local bookstore and library  that A Soft Voice is available for easy ordering from Lightning Source. This makes ordering for libraries and bookstores who want to have copies in stock very convenient.
  • If you have a support group and are considering a bulk order to sell, giveaway, or are considering  a book club with the book, please send us  mail.
  • I speak frequently to Parkinson support groups, conferences, and medical groups and can speak on the book or a wide range of topics if your organization is in need of a speaker.
  • 5 Tips For Today
  • Most time-release pills have a matrix makeup and should not be  split, so check the bottle and/or ask your pharmacist.
  • Citrus and pills are not always a good combination, so make sure the citrus and your pills don’t interfere with each other.
  • The mind, body, and spirit, are all connected so feed all three! Challenge your mind,  Work the body, Calm your spirit.
  • Laugh, laugh, laugh.

I will be attending and speaking on a panel at the World Parkinson Congress on creativity. If you are attending the event, please come by!

Have a great day!

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.

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