Category Archives: Medications
Dyskinesia is the uncontrollable jerky movement of hands, feet, or head. Often misunderstood, dyskinesia is a side effect of the Parkinson’s disease medication. Sometimes, this side effect is embarrassing, annoying, and at times even dangerous. Besides drawing attention to you from complete body writhing, dyskinesia can be exhausting. When I experienced 1 to 2 hour episodes of dyskinesia, I would feel like I ran a marathon without ever leaving home. Small spaces, sharp edges, and anything glass or breakable was a potential hazard. Trying to hold a drink with dyskinesia is a struggle, as your hand wants to splatter everything in sight but your mind screams, “Don’t do it!”
Tremor and dyskinesia are different. Unlike tremor, dyskinesia is bigger than a rapid twitch or tremble. At times, my entire body wiggled and flailed. It still happens, but only on an infrequent basis. Dyskinesia interferes with delicate and precise movements as well as simple everyday tasks, like making a sandwich, pouring a drink, or slicing bread. Someone with dyskinesia may struggle to brush their teeth, comb their hair, or just perform normal acts of daily living. Constant care and awareness is heightened to avoid food from flying everywhere.
People who don’t know me that well, who may see a brief shake, may laughingly call it a “dance”. Calling dyskinesia a dance may be meant to lighten the severity and discomfort of the event for all involved. Dancing is by choice—dyskinesia is not. I tolerate this comment but admittedly wish that those calling dyskinesia a dance could refrain from reducing a drug interaction that affects so many, to a recreational act. Dyskinesia in public is a teachable moment! Explaining to the uninitiated that this isn’t part of the illness of Parkinson’s has been a constant challenge.
Understanding dyskinesia from the non-scientific perspective isn’t that complicated, but trying to negotiate it, reduce it, and calm it, is the hard part. Never knowing when or where it might crop up can keep you on edge. It adds more stress—not what you need! Over time, I have gotten better about finding some control with the help of meditation, yoga, breathing, and reiki.
I realize that the distinction between tremor and dyskinesia probably in the scheme of things isn’t all that crucial, but what is important is the way either symptom is accepted by the public. Educating the public and demystifying the nuances of Parkinson’s can bridge the gap and clarify just what the public should understand about symptoms and side effects related to Parkinson’s disease.
Today, I have a slight deviation to my usual positive message for an expression of frustration and a plea that I strongly feel needs to be expressed. Consider this my contribution to advocacy:
Congratulations if you are watching and reading the world news and can remain calm. I for one, am unable to digest the vitriolic, bombastic, childish, unproductive, hateful, remarks coming out of our nation’s capital.
When I was a child in the 1970s and 1980s our greatest fear out of Washington was the threat of nuclear war. The fear generated countless classic Hollywood blockbusters and the story slowly faded in the background, until now. The threat was probably there the whole time, but it did not remain on the front page and now, in addition to the chaos of the Trump White House, the threat of climate change, and the shake-up celebrity marriages, it makes one ponder just what to do?
If you are dealing with Parkinson’s or any disease, this is the last thing that you need on your plate. Healthcare, doesn’t mean much, until you need to access it. Our Congress, Senate, and President are entitled to full lifetime health coverage for little or no cost. It is more than a nice perk. They don’t need to vote on a healthcare plan for themselves, they’re just fine, thank you.
As for the rest of us, who actually, could use affordable healthcare, many of us are left dangling in the wind and waiting for a solution. It isn’t pretty, sexy, or exciting, but it sure is needed. I have never seen our government at such a standstill as it is at this time. A stagnant Congress and a President in turmoil leave the millions of people in need of affordable care under undue duress and the inability to move forward.
I know of many friends and fellow people with Parkinson’s who have to make the decision to cut back on their grocery bill to be able to pay for this month’s medication bill. It shouldn’t have to be that way. Sacrificing from your already reduced food budget to eke out enough for some or all of your medications is a sad and scary trade off.
Therapy caps have created a huge problem in limiting coverage for appointments for those of us who benefit from occupational therapy, physical therapy, speech therapy and rehabilitation. These outpatient services keep many of us out of the expensive doctor’s offices, crowding hospitals, and keeping patients active in their community.
I wish I had an answer. I wish I wasn’t so frustrated. I wish someone would hear our voices!
Tomorrow, James Parkinson‘s essay will be 200 years old. Since his discovery, modern medicine has made strides with L-Dopa and Carbi-dopa breakthroughs that have become the long-standing gold standard of regimens. Not to diminish the importance of the Levadopa breakthrough, but that was over a half a century ago.
New drugs and procedures are slowly trickling out, but no one drug that I know of has impacted Parkinson’s disease as that of L-Dopa. To this very day, since my 1991 diagnosis, I have found benefit from this most amazing life-changing drug. I am very lucky to report that my dosage, even after all this time, is a lowly 3 pills (25/100) a day. I aim to keep my pill consumption to the utmost minimum, but only time will tell.
I am hopeful but impatient as I plead with any pharmaceutical company, researcher, doctor, or anyone connected with creating new innovations to the neurological world that a huge need is there, right now, and an escalating problem that will impact so many. I would offer detailed numbers, but at this time, as we have no hard numbers, for lack of a registry devoted to Parkinson’s patients, the numbers just aren’t gathered, yet.
On World Parkinson’s Day (4/11/17), like millions around the world, I will be participating in #UniteForParkinsons. Please join us to spread awareness via social media to the world about Parkinson’s disease. Visit https://www.worldparkinsonsday.com/#world-parkinsons-day for more information!
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!
Parkinson’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.
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:
- 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.
- 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.
- 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.
- 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.
- Remember to breathe, breathe, breathe! Deep breathing is something very few of us do enough. It feels so good to breath deeply.
- Go into each event expecting to have a good time and to really enjoy yourself. Keep your expectations in check and just be present.
- 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.
- 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.
- 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.
- 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!
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.
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!
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.
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.
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!
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!