"I AM"- are the two most powerful words in the dictionary because the ending determines your destiny….so join me in my fight against PD to make sure that everyone who suffers from this chronic progressive degenerative disease can develop the courage to shout to the wind- I AM Fierce and Courageous ….
As we draw near to another years end, I want to write about something near and dear to me as a woman, mother, cancer survivor, Parkinson patient/ doctor and advocate!
I began this blog, as away of coping with this illness and also as a way to show women everywhere who struggle with this illness in their daily lives as patients, wives, mothers, daughters, caregivers -that they TOO had the power within themselves to beat anything that is thrusted their way.
But best of all, I want to stress to my readers that the positive energy that empowers them to be able to crush Parkinson’s comes from the fact that we are women.
I started writing about dressing shabby chic despite Parkinson’s and feeling sexy and beautiful in spite of having a chronic neurological disease like Parkinson’s ….in between I wrote about many coping skill strategies in dealing with the diagnosis.
Today, we have come full circle.
I am asking my readers to keep their lipstick handy! In whatever shade they prefer….personally a red or pink will do!
Because like Suzy Toronto, I too, when I think about the women I admire and have made a big difference in my life and in the world….”before they ministered to the sick, the poor, or changed the face of politics… They put on their lipstick first!”
“This small act throws us back to a much simpler time when women showed their determination & focus by placing on lipstick and then going out to the world and doing what needed to be done.”
I grew up always PUTTING on some lipstick even if it was a very light shade of pink before tackling any job…even while in medical school when I had no time to eat or sleep …I would grab my only make up at the time…my ever trusted lipstick which I always carried with me no matter what…and apply on the way to operating room or to visit a dying patient ..”as if it would magically give me the strength and willpower to tackle whatever challenge stood my way.” Now, as I live with my PD diagnosis putting on some lipstick not only helps me feel “normal” but like I can still tackle the world! This shear act makes me feel pretty and feminine even if that’s the only thing I managed to accomplish during the day that required any fine motor skills!….
Lipstick helps me face the day’s adventures, challenges, and strength to dive into the daily world of Parkinson’s. Before I put on my big girl panties, I start with a “fresh face and a gorgeous shade of (red)” to go with my shabby chic diva look!
For you, my readers it may not have to be a lipstick…it can be anything that makes You feel good and empowered ….like riding your favorite bike, putting on your favorite tennis shoes to go for a run, putting a comfy shirt to inspire you to paint with all the colors of the rainbow, or wearing a pair of favorite shoes ( red or any other color that inspires you!). In short, whatever it is that empowers you and helps you tackle the world head on, allows you to take care of yourself and your loved ones, be a better mother, spouse, sister, daughter, Parkinson’s advocate…make it a part of your daily routine for the whole of next year and every year!
Use what works to get your female power flowing to change the world around you and make living with Parkinson’s disease an amazing ride!
“Drive carefully! Remember, it’s not only a car that can be recalled by it’s maker.”
“Why is it that you always say go faster when we are driving but slow down when we are walking?” ponders my husband, frequently, out loud…..
Although, I did not get my drivers license until my mid-twenties and in fact purchased my first car without one ……
Once, I hit the roads of Houston…I never looked back…nothing like the freedom of driving in an open road pushing the speed …. and even now with my illness my greatest joy is driving; makes me feel normal! I can control how fast I can go unlike my walking…which seems to have a mind of its own!
In this country, driving is not only a rite of passage into adulthood but also a sign of independence and freedom….
So, its no wonder we react so violently and negatively to anyone threatening to take this right and privilege away….we feel as if our own independence and livelihood are being challenged.
As, a young healthy physician, who could do whatever and when ever, I did not quite grasp the impact of asking my patients to give up their licenses voluntarily or even worst forced to surrender….
My naïveté cost me a few patients in the beginning…even though they were completely unsafe to drive and it was my duty and professional responsibility to look out for their well being….
I soon realized that it was best to put responsibility back on their hands by challenging them to prove to themselves and the state of Texas they were competent and save drivers…. they could take a course with occupational therapist or retake their driving test administered by the DPS -Department of Public Safety….this way the family felt better if DPS said ok or not ok and so did patients….
Further, we spoke of “retiring” from driving as you would from a job, etc. This, I believe made it easier psychologically in as far it became another “milestone” in life for an individual to pass through.
Certainly, the consequences of giving up the freedom of being behind the wheel cannot be totally dismissed from both a psychological and practical view.
This is true at any age …. whether you have been driving for 10 or 50 years….
I recall when I was first diagnosed with my PD and battling cancer…
I was unable to drive for nearly a year due to medicines side effects and weakness….it was like being a prisoner although my friends were excellent at taking me places. But loosing my independence made me feel like a real invalid having to depend on others for basic things picking up my daughter from school and going to the store for house hold supplies even going to the doctor…the fear and panic intensified as my driver’s license renewal approached and I was still very weak. Fortunately, I was able to keep going because I and my doctor’s knew this was a temporary condition…
However, the decision to give up or maintain a license is not always clear cut…there are a number of factors to consider…
The Parkinson’s Disease Foundation (PDF) put it best in an excellent article they published on the subject, a year or so ago, about the 4C’s to consider and discuss with your physician regarding driving safety.
These are as follow: Concern about safety- if you or your family is worried about your driving skills. Condition– are you end stage, unable to turn head and neck, unable to quickly apply breaks, or falling asleep at lights or extremely tired and fatigued and sleepy through out the day. Crashes-if you had a fender bender or accident caused by you or caused other people to have accident or multiple fender benders and near crashes. Co-morbidities– if you have severe dementia or cognitive impairments, or other medical problems making driving unsafe like weakness, or sleep disorders.
Then it is time to talk with your physician if he or she have not already done so. (for more information on the subject, visit PDF website under driving recommendations and 4C’S-www.pdf.org).
The majority of PD patients can operate a vehicle safely until it is inevitable with the passing of time and advancing of disease that many patients reach an impasse in which driving is no longer safe….
However, you must know that not only are you liable for any injuries to others on the road if you are not safe but so is your physician if he/she fails to inform you or advise you on the risk of impaired driving performance.
Furthermore, some states like Pennsylvania are implementing mandatory reporting of impaired ability to operate a car or motorized vehicle. Your permission will be asked but keep in mind that if you refuse and doctor feels you are a threat , the physicians responsibility to protect you and others supersedes any HIPAA rules and supports breach of patient confidentiality.
Stay inform and know your rights…
The American Medical Association (AMA) offers a state -by -state summary in a section of its website (www.ama-assn.org) which is also devoted to counseling patients about driving. They also provide a patient self screening tool which may be helpful for Parkinson’s patients to recognize their deficiencies and increase the willingness of the person with PD to formally consider driving assessments. Further, it also provides individuals a test battery called the Assessment of Driving Related Skills which can help the doctor obtain some objective information but in the end the best measure of safety driving is what I recommended my patients – a formal assessment of driving skills with a simulator or in a controlled testing scenario.
Finally, they have a downloadable handout called “Getting by Without Driving.”
The National Parkinson Foundation maintains a similar list.
Together, patients, family, care givers and health professionals MUST work in unison to find solutions for those that have depended on a car for activities of daily living like grocery shopping, going to the post office, going to work etc.
It will certainly entail a substantial adjustment on everyone’s part especially for the patient which might include new living arrangements.
However, given the consequences of driving impaired although extremely difficult and heart wrenching for some, relinquishing your license is NOT an OPTION if PERFORMANCE is IMPAIRED!
Many would argue and answer in the negative while others hold reservation inclined to a more optimistic attitude….
I would say a resounding YES!….There CAN be a GREAT LIFE after Parkinson’s…
just look at Michael J. Fox ….he has been up and down ( now I feel like breaking into chorus like Sinatra) but I digress….he is starting in a brand new T.V. show which debuted a couple of weeks ago in which he is the main star playing a man living with Parkinson’s Disease (PD).
After many trials and tribulations even in the face of continued dyskenesias, he has found his niche again……
I myself have not always had an easy time of it in the last 8 years since my diagnosis. I have had to face many challenges of my own and at times simply felt like giving up but despite all the heartache and personal losses in the end the uphill battle has been worth the climb!
In thinking about the life with PD, I am reminded of the dry bones in the desert into which God breathe life into ….surely we are not to that stage yet, so there must be hope …
Yet, all us have been confronted with the stark reality ….this IS OUR LIFE and IT WILL ONLY GET WORST (PHYSICALLY)..which BELIEVE ME ……even for an ETERNAL Optimist such as myself …this is ONE BIG MASSIVE HORSE PILL to SWALLOW!!!!
I can certainly understand why some people feel like they have been handed a “life sentence” when given this disease diagnosis. I, as a neurologist and Parkinson’s specialist, have witnessed all the varying stages of this devastating illness from early diagnosis to patients finally succumbing to this diseases having battled it for years with courage, great dignity and equal bravery.
when I think of these wonderful people whom I had the honor and privilege to care for I get sad, begin to bargain, but refuse to get mad……so I feel like I am drowning …….BUT maybe we do NEED to get MAD…..and fight …back with even greater force…we don’t have to take it….we don’t have to be passive….there are things we can do for ourselves and others….but we first have to learn to LET GO of the pAST (something which I have had a very hard time doing until very recently) ….we as individuals are meant to grow and change and evolve…so why cant I move on? I guess is stubbornness, denial, vanity, not accepting that I too need help ….we are not islands to ourselves…we do not live in isolation…..the body functions with the help of many members with different functions …yet they are equally important…one CANNOT function without the other! We need each other as support …
Now my chronic illnesses (PD) has put me in position to be dependent on others at times but it has also allowed me to become a better human being a better person, wife, mother and friend! I can appreciate my patients humanity and makes me want to fight the stigma of PD with which so many people live with even more.
The other day as I was sitting at a football game watching my daughter perform in the band, I saw a beautiful rainbow in the sky …which reminded me that ” you can’t have rainbows without storms” yes, my life has been one HUGE storm lately but I have seen and experienced many wonderful things along the way that had I NOT been diagnosed with Parkinson’s and forced to look for plan B and give up my solo practice…I would have missed out entirely….like going to my daughter’s concerts at school, and learning to be a better mom- my daughter said the other day…’ your cooking has gotten so much better since you stopped working! I am so glad you are home more now!” these are the real treasures in life ….that along with all the wonderful and extraordinary people I have gotten to meet along the journey have deeply impacted and enriched my life forever in a way that perhaps would not have been possible with my previous duties and responsibilities even if it was my desire to connect more with others (outside of my practice and immediate circle of friends and colleagues)….
As dumbfounded and somewhat apprehensive about my future (knowing all the intricacies of the disease first hand) as I was, it was liberating to know I had a chance to do something new with my life! This was the opportunity of a life time…how often do we get a chance to start over? Until now, I had always known or had an inkling of what I was going to do the next day and the day after. But, now the pages were blank….it was up to me to decide if I was going to panic, be paralyzed and consumed by this illness or pray and be empowered by it and continue pursuing my passion in different ways outside of my traditional role as a neurologist. Parkinson’s has allowed me to express myself more creatively through my writing and has thought me to laugh and find joy in everything no matter what. Life is sweeter this way and makes the hard times easier to endure.
So, where ever this disease finds you today whether still gripping with the shock of a new unexpected diagnosis or you are cruising life as a pro or battling the problems that come with end-stage disease, I encourage everyone to embrace the odyssey of becoming more human, more empathetic, more able to relate and anticipate the great need of others (like ourselves).
And in a hostile world where things don’t always go our way and terrible things do happen to good people…despite your limitations and failures shout as the poet and author W.H.Auden once wrote : “let the more loving one be me!” (The More Loving One) and in the process all those new found relationships will deepen your reason for being and help to discover goodness and contribute to its beauty by the works of art, music, poetry and other writings you all create by virtue of having Parkinson’s.