A few days ago, I wrote about the new women and Parkinson’s initiative and our goal to empower every woman living with pd to be more than the broken pieces left behind by a cruel and often devastating illness. as a Parkinson’s specialist I often found women to be the most affected by this illness whether they were the patient or the spouse. Some how we always seem to bear the brunt and full force of the illness which can weigh us down over time if we don’t have proper resources and support( severely lacking in many parts of the country and world) Therein lies the biggest difference between men’s PD and women’s PD, in general, men have much better support financially, emotionally, and physically. While women often find themselves not only struggling with negative symptoms such as depression and anxiety but often have to go at it alone. Given the enormous pressure on the shoulders of a single individual who may also be a single mom and sole provider, sometimes it is just easier to hide behind a mask, in this case PD, and lose yourself.

One of our biggest focus in this initiative for women with PD should be as  mentors. This unique privilege bestowed upon us at this conference encompasses all the roles I previously detailed in my last blog -becoming advocates, role models, resource women, and excellent listeners. 

We must Never Forget and Always Remember that we are women and human beings first and foremost then Parkinson’s patients!

Because Parkinson’s is often referred to as a “public disease” the physical manifestations like tremors and masked fancies can exert an even more devastating effect on women’s self esteem. this is Unfortunately due to fact that people are frequently perceived and labeled by their public appearance. Looking depressed and being depressed can worsen this misperceptions of being less than causing further isolation especially as disease advances. but, if we have someone guiding us, lifting us up, and catching us when we fall we too can walk proud, head held high in our best attire even if we are shaking up a storm!

Therefore, it is our job and duty to lift one another up offering practical help when feasible like accompanying her to doctor, take grocery shopping if she is not able to, provide phone numbers to community resources, baby sit, pick up kids from school, and so on.

Always be an encourager. You may be the first person who has ever shown any confidence in them as a woman and a person of value.

Be a counselor with her best interest at heart. Start by being a good listener. Don’t be afraid to nurture emotionally and spiritually. Before healing can take place on the outside it must begin on the inside- remember this!

Most impostant of all be a guide. You have been where they have not been yet so model so they too can follow the path. They need to be able to follow how to fail as much as how to succeed and still stand with dignity in one piece and stronger than before the storm.  Hold them accountable as you would yourself.

Doing these things no not only will give meaning to your own life with PD (releasing beaucoup serotonin) from your brain but it will also do the same for her; thus warding off depression. See serotonin is what gives us sense of accomplishment and self importance and worth so it’s a mutually beneficial endeavor.

together we can unrevel our inner gifts and find our true inner beauty and help us  leave the mask of PD behind.

The saddest thing for me would be for us to live a life with PD (or otherwise) as if it were a masquerade ball but upon leaving no one would ever know who we were.

Last week, I was extremely fortunate to attend a first of its kind conference “Women & PD Initiative” to address the unmet needs of all of us women who live with PD.  All of the presenters were absolutely fabulous but most impressive were the participants with whom I got an opportunity to interact. Each one of them a true inspiration. Although they came from all walks of life, each in her own way had already taken the bricks that were thrown at them by this progressive incurable neurological illness and decided to make a fort for themselves and others. Though they were writers, activists, health professionals, business administrators, social workers, artists, lawyers, and so much more each were empowered by their own disease in a way they all knew, as I do, that life is too short to walk defeated. Rather than focus on the broken pieces, we all chose to focus on what it is we can STILL do with those broken pieces and rewrite our own story.

For two days, we listened attentively to the entire impressive line -up of speakers put together by PDF and the steering committee.

Among the speakers were Dr. A Willis- who brought to light the many disparities that still exist within our communities between men and women starting with delayed onset of diagnosis for those of us who are women which also includes delayed treatment by a MDS or even neurologists. Sadly, even when women do finally get seen by a specialist they often do not receive standard of care- meaning often times they are not offered DBS (deep brain stimulation) as a treatment option. Dr. S. Silver- made us laugh and redefine the way we view our own sexual roles within our relationships. She stressed the importance of having time alone as a couple and that even a hug can have sexual significance. This is extremely important as I wrote in my book the “Parkinson’s Diva,” men and women secrete different amounts of the same hormones which makes us perceive the world differently. One of these hormones is oxytocin which is crucial in bonding and intimacy. This particular hormone is release after sexual intercourse in abundance in men perhaps the reason why they always seek this activity to form a bond with us women however smaller amounts are also secreted by simple hugging. The longer and more frequent you hug the greater the bonding! (There you have it ladies- hug your man as often as you can).

Then we had a stretching work out with the lovely and energetic Dr. B. Farley who taught is that the key is stretch your muscles daily!!! As well as routine exercise even if it’s just 10 minutes a day. However, from studies done on memory and Alzheimer’s it has been shown that exercising in the form of walking 30 minutes a day three times a week can delay onset of memory loss/dementia especially in women and improve depression so what are we waiting for let’s get moving!!!

Diane Cook reminded us that self- efficacy is a powerful force and we all can learn to exert a more positive affect on one’s one life through positive thinking and positive reinforcement. When negative thoughts intrude don’t dwell on them say STOP! And replace with positive attitude- as Diane so eloquently illustrated her point bringing to mind the popular children’s story of “The Little Engine that Could” and so can you.

So now that we left invigorated it is time to become Women & PD Initiative:

Advocates- To walk along other women with PD in their journey. Help to smooth ruffled feathers in their new unfamiliar world and understand how to navigate that world.

Role Models- to help find a new empowered new way of going about life with PD full of hope, spirituality, knowing how to use her own skills to deal with stressful situations, depression, interpersonal, personal relationships as well as help to teach her how to become a self-advocate and advocate for other PD women.

Good listeners-not just hear the words of those we share the journey with but understand their body language.

Resource persons-help other PD women develop a network of resources, and support to help them in their journey with PD to self- sufficiency and self- empowerment. Help to identify needs in the women with PD lives and develop action plans together to meet those needs.

Let our work help other Parkinson’s women around the globe find their own strength and summon their inner diva to rewrite their own stories as well!