March 15/2016
April is Parkinson's Awareness Month. So, why in March, am I already preparing myself for the barrage of PD information covered in beautiful coloured tulips, and pretty grey/blue ribbons?? Why am I dreading those happy, fun filled pictures of the variety of fund raising efforts?
Perhaps it is because this is the year that I feel I have come to terms with having Parkinson's. Perhaps it is my age and experience that lead me to even question (how dare I question my hero?!?!) the charming, happy covers of Michael J Fox's books, that have helped so many?
I am becoming cynical. Parkinson's Disease is not always pretty, or funny, nor the people with PD always strong, and trying to enjoy the best of their days. Some people with Parkinson's (PWP) suffer alone, in shame, and guilt. These are the people that often do not share their voice when we have the April PD Awareness blitz each year.
These are the people with whom I have come to know directly, and indirectly, on a site that I help administrate, which focuses on the sometimes horrific side effects of the PD drugs/meds. These stories are often dark, unbelievable, and thus, untold. These are the people who have suffered through more than the disease itself.
T he most potent medication for Parkinson’s is levodopa. Its development in the late 1960s represents one of the most important breakthroughs in the history of medicine. Plain levodopa produces nausea and vomiting. It is now combined with carbidopa to prevent this side effect. The well-known combined carbidopa/levodopa formulation is called Sinemet. The downfall is that it can be potent enough to cause dyskenisia which is the unvoluntary movements that are commonly seen in Michael J. Fox.
Dopamine Agonists,are drugs that stimulate the parts of the human brain influenced by dopamine. In effect, the brain is tricked into thinking it is receiving the dopamine it needs. In general, dopamine agonists are not as potent as carbidopa/levodopa, and therefore are less likely to cause dyskinesias. Dopamine agonists can be taken alone or in combination with medications containing levodopa. The two most commonly prescribed oral pill agonists in the US are pramipexole (Mirapex) and ropinirole (Requip).
In the 1990s Dopamine Agonists (DA), were toted as the "wonder" drug by Pharma and physicians. Patients displayed unarguably amazing results. In fact, they were feeling euphoric. Great news to the general PD public that suffer depression and apapthy. But the euphoria was so dominant it made patients feel uninhibited, enhanced compulsions, including sexual and gambling addictions, and many others.
The difficulty with the DA is that patients were feeling great, but also narcissistic. The medications drove their desires to such extremes, that the patients were unwillingly, unable to control their compulsions. These varied from gambling, to shopping, to spending to such a heightened state that theft, prostitution, etc., were hand-in-hand the only ways to feed their compulsions. As a result, the patients were arrested, imprisoned, lost family, lost their homes, and their jobs.
When it was finally realized that the DA meds were to blame, the compulsions had totally consumed the lives of the patients, that shame, and remorse had such a grip on them, they were in denial. Family and friends that stood by, found the life altering effects consume their loved one to a point that their personality, disposition, and even morals had been beaten.
Physicians quickly withdrew as many patients as possible from the DA meds. But what followed was not expected. .......and even today, a virtually unknown condition called, Dopamine Agonist Withdrawal Syndrome (DAWS). The main symptoms of DAWS are anxiety, panic attacks, depression, agitation, irritability, dysphoria, insomnia, and fatigue. But the symptoms are so severe that many suffer years of deep depression and suicidal ideation. It has been compared to the withdrawals faced by cocaine and/or meth addicts.
So....as can be understood, the shame that follows isolates the PWP from his family, friends, and his world in general. They struggle to clean up the damage left behind....often through bankruptcy, divorce, prison time....some of the worst situations that these previously honourable, trustworthy, upstanding members of society could never have imagined would ever enter their lives.
The symptoms of Parkinson's Disease are very trying on a whole. Living daily with tremoring, pain, balance and gait issues, along with a number of cognitive issues, are difficult at best. Then to have the years of DAWS added to it, the lives of many have been destroyed. Destroyed by a little pill that was taken in the hopes of extending some less symptomatic daily living. Instead , this little pill virtually destroyed families and lives.
This is the part of Parkinson's Disease that is rarely discussed, the shame and regret overtaken. There have been class action lawsuits against the pharmaceutical companies in Canada, UK, USA, and Australia. But no amount of money can replace the lives that were forever changed. These are the stories that are not told and spread in an awareness blitz. This is the dark side of PD that is rarely, if ever, presented to educate the public.
So, yes, cynically I am preparing my happy, positive postings to share in the month of April. To at least make people aware of Parkinson's Disease. Perhaps one day, we can share it more truthfully....not hide the secret battles Not seek isolation for fear of losing the privacy that victims fight to hang on to.
We face shock advertisements on cigarette packages, revealing the dark facts of cancer. We accept the horrendous stories of dealing with alcoholism and drugs through tv programs and documentaries. Perhaps it is time to face the shock that many PWP also live with.
This April....I too will post pictures of colourful tulips, ribbons of hope, and happy faces particpating in raising money. The positive, happy hero of PD, Michael J Fox will make appearances, and inspire us all. But if you by chance, have read this blog, perhaps share one of the darker sides of Parkinson's with at least one other person. If we can't change what has happened, we can at least prevent it from happening to someone else.
Okay......awarness blitz away! I am moving past cynical and aiming for hopeful.
