Category Archives: Medications

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
———————————————————–
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/
—————————————–
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
——————————————-
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.
—————–
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
————————————————-
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.
————————————–
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.
————————————-
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.

Timing in Parkinson’s Disease May Be Everything

Do you find yourself losing track of time? Do you ever miss a dose of your medicine because you get  distracted from the task at hand? Well, you are not alone. This is a common problem with Parkinson’s disease (PD) patients as we somehow find keeping track of time to be a challenge.  Multi-tasking for someone with this illness is probably a mistake but if an orderly and defined task list with a defined time of completion is stated, there is a much better chance for that task to be fulfilled, as long as the individual is capable of performing.

So much of being capable is scheduling your medicines appropriately to your day. Keeping up on your daily regimen can be a full-time job in itself.  The longer that you have this illness the more important it is to remain diligent in monitoring how your body is reacting to your medicines. Too little medicine in your system and signs of PD show through and too much medicine unleashes unwanted side-effects. On top of the maximizing of your medicines add the variables of how you slept the night before, how much stress you are under, what you ate and how much, and even your mood and state of mind. Even the weather can play a part in how you are functioning today. As I write this, I have no empirical research to back this statement up, but I know for me, weather has an impact on my condition and how the meds work or not.

Here are 5 tips or suggestions to getting more out of your medicines and your day:

1) Something as simple as wearing a watch that beeps on the hour can keep you aware of the day and alert you to when you may be due for your next dose. There are some elaborate and helpful timers and pill box systems to keep you on track for sale. If you are interested , Google “electronic  pill box” or “pill timers” for more information.

2) I find a little caffeine with my medication speeds the uptake. This may not work for everyone and if you have heart problems or a problem with caffeine, don’t try it.

3) Calm your mind and body for at least 5 minutes a day with a meditation. As you get more used to meditation you can do it for longer periods. Try different types and see what works for you.

4) Keep as fit and active as you can be. Build a regimen that you can stick to. Try to incorporate stretching, balance, walking, and maybe weight training. Consult with your doctor and a qualified physical therapist or trainer who understands PD.

5) Challenge your mind daily. A daily crossword or Sudoku can be a wonderful way to get your brain going for the day–but keep track of your time!

This is my 50th posting. I would love to hear from you, the reader.  If you enjoy this blog, please pass it on to others who may find value in it. Please subscribe to this blog and you will be automatically notified when this site is updated.

Thank you for taking time out of your day to read this. http://www.asoftvoice.com

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.

New Development On Fruits!

A new release on the benefits of fruits and flavonoids is out and medical researchers are touting the potential benefits. As a long-term vegetarian and proponent of fruits and berries, it comes as no surprise. I am happy to see this news though. I truly believe that the lower you eat on the food chain, the healthier you’ll be. Here is the link to the new report on fruit.



My Zelapar Follow Up

To my few but loyal followers, I apologize for the brief hiatus that I have taken in keeping my blog up to date. I am publicly making my declaration that I will try to commit more time to keeping this space current and relatively entertaining. I ask only this, of you the reader, if you think this, my blog, to be of worth, that you pass it on to a friend, a collegue, or even just someone that you feel a need to get back at–well, okay that might be a little cruel and unusual punishment. 

I realize that I never got back to you, my friends, what the final outcome was from my nightmare account with Zelapar, a drug that I only took for 3 days but stayed in my bloodstrem for over 21 days. If you missed my saga with this drug, just check out my earlier postings to learn how this drug dragged me through the proverbial ringer.

At this time, I think that I can honestly conclude that I have no residual side effects or known damage from my stint with Zelapar. Yes, it caused weeks of frustration, weeks of aggravation,  and much more dyskinesia than I am normally accustomed to, but in the end, I came out alright. As best as I can tell, I seem no worse for wear.

I can’t say it enough: Every PD patient is different and every med is going to help, do nothing, or challenge him or her.  If I can offer any advice, from personal experience and not from a medical perspective, the patient can best serve themself if he or she monitors his or her condition closely as to best be aware of any encroaching side effects or changes in condition. What works for some may not work for all–it’s just that simple with this disease–at least from where I sit.

No thanks to the makers of Zelapar or the FDA, both with whom I filed concrns with, only to be lost in the vapor. No follow-up call, email, or contact of any kind. I would think that there would interest by someone in one of these large institutions that actually give a damn–but no! Then today, this piece of news slippped below my radar:

Aug 20 (Reuters) – The U.S. Food and Drug Administration said on Friday it will examine the potential heart risks of Novartis AG’s (NOVN.VX) Parkinson’s drug Stalevo, a combination of two treatments for the debilitating brain disease.

I am not on Stalevo but I have many friends who are taking this drug. I encourage you to keep up with the constant flurry of PD data, breakthroughs,and warnings through the power of Google and the web, whether you are on Stalevo or not. If you are on Stalevo, I would suggest that you closely monitor the outcome and keep in touch with your Neurologist about where this goes.  Remember, that’s just my humble opinion and not medical advice.

Let me know what you think and please subscribe to my blog. Thanks!

More Helpful Apps For Parkinson’s Patients

More Helpful Apps For Parkinson’s Patients

As a self-proclaimed APP addict, I am discovering the power of a good APP. A good APP keeps you informed,  educates,  entertains,  amuses, makes you think, relaxes,  or expands your consciousness.  

Here are a few of the Apps that I have collected that you may want consider trying:

Epocrates–It’s not just for doctors anymore and the limited version is totally free! Find a thorough list of potential drug interactions with other medications, photos of pills for identification, dosing, black box warnings,  adverse reactions,  manufacturer pricing, and more.  If you want to know what you are taking and are interested in getting a full comprehension of your meds, then this is probably the App up your alley.

Type’n Talk-This App is very similar to a type and talk App that I mentioned in my last App review but this one seems to be noticeably louder than the other one. Granted both are of value but it’s up to you to determine which is of most benefit to you.

Soundhound-Okay, this App isn’t that new and it isn’t really a PD App but it is just too amazing not to mention! If you hear a song and you don’t know the name of it all you have to do is turn on Soundhound and he’ll find it for you. An example:  I was watching a commercial the other day as a test and played 10 seconds of the song off of the television and sure enough, it located the name of the tune and the artist. I was watching a movie and I uncovered a Green Day song that I am adding to my music collection. The best part of Soundhound is I didn’t have to pay anything for this version of this amazing App!

Echo-If your concentration has a tendency  to wander maybe Echo can assist. Reminiscent of a toy from my boyhood that many of us will remember, Echo is very much like Simon, the copycat toy. Remember the sequence of lights and sounds and train the brain to concentrate and remember. Play against yourself or play it with company.

Parkinson’s Drug Trials-I was pleasantly surprised to find this interactive search tool for locating drug trials related to PD. If you are thinking about or searching for information on PD drug trials then this might really interest you.

GameBox-Now, has 35 free games and one of them is Sudoku! It’s free and it’s fun–it builds concentration and gets you thinking. The other games are varied and lots of fun as well but do your brain work first!

Labyrinth 3D-Is not just a visually stunning mock up of a ball game but it is also a great use of eye-hand coordination and a challenging test of hand control.  It’s a simple concept of put the ball in the hole, but sometimes it isn’t that simple.  Labyrinth  3D will test your hand if you tremor and may just help you to have fun  and therapy all-in-one. I know that I find it relaxing, purposeful, and centering to identify the game’s objective and focus on the task. Try it and see what you think!

I want to know what you think. Please let me know if you are reading this and subscribe and comment at www.pdpatient.wordpress.com. Thanks for reading my blog, A Soft Voice In A Noisy World.   I’m not a doctor nor am I a therapist. I am just someone with PD for over 20 years seeking ways to improve myself.  This review  is just my opinion and not meant as medical advice.

Apps To Help Parkinson’s Disease?

PD Apps

A good App should make your life easier, educate, entertain, inform, or enlighten. For someone with Parkinson’s  disease (PD) who is seeking relief from  a wide range of symptoms (voice, balance, tremor, gait, and memory to name a few) there just may be an App for your iphone  or smart phone–and it may even be FREE!

The following are a just a few Apps that I have uncovered and use. While I have no medical data or solid evidence that they are making any real change, all I can do is suggest that you give it a try and see if they work for you. Here you go:

1) Voice Recorder – The voice recorder on the Ipod touch and Iphone is a marvelous tool to test the quality, strength, and loudness of your voice. The Program is simple to use and a great way to get instant vocal feedback on your own.

2) Speechie- Is a free text to voice App. The Program provides the user with a choice of 5 different voice options. All that is required is for the user to type in what he/she wants the voice to say, tap the button and the voice speaks what you wrote. It’s that easy! If you want to complicate it, the Program allows you to alter the speed and pitch of the voice. Speechie may be helpful for anyone who can still type but has difficulty with speech.

3) Sound Level-is a free App(or pay for a version) that monitors the loudness of sounds–it’s your own portable sound meter. This may just help you monitor and maintain a louder voice and keep people from asking you to speak up.

4) Lists-I love a good list and I find that a list can often help keep me organized. Lists is an organizational genie as it allows lists with sub-lists within sub-lists. The App is easy to use and worth the time!

5) Sleep Machine-has a free and paid App (paid App has more sounds) made to lull you to sleep. Select from a variety of sounds to send you off to lala-land. Crickets, wind chimes, and pouring rain are just a few of the many soothing sounds from which to choose.  PD patients can face sleep problems that only exacerbate our symptoms when we aren’t totally refreshed. Now, there may be a free App to relax you and help you get a few more winks.

If you  have any favorite PD related Apps, let me know!

%d bloggers like this: