As we approach a New Year, I am more determined than ever to continue the fight against Parkinson’s disease both on a personal level as well as a collective effort. As a physician, and patient I have been privy to many extraordinary advances in the understanding of this complex illness over the last decade. However, 2016 saw rise of a new movement towards better understanding the differences among us all (those of us with Parkinson’s), in an attempt to try to find a unifying link that will lead us one step closer to a cure- if not for all perhaps for a number of distinct subtypes (e.g. LRKK2). There is the large PD study being supported in part by the PDF which aims to unveil different genetic information causing Parkinson’s disease among various ethnic populations (particularly looking at Hispanics with PD).
We also have begun to recognize the importance of gender in the presentation and I believe soon we will also realize that age also plays a factor adding another piece to the puzzle. We have learned that non-motor symptoms are just as/or more important to recognize and treat because not only do they start 10-15 years before motor symptoms; but also can often be the major cause of disability and decreased quality of life. we got several new formulations of old drugs e.g. Rytary and are anxiously awaiting new ones to come out like inhaled levodopa (Accordia) and sublingual Apo morphine. We saw strengthening of the commitment for a cure as organizations merged (NPF & PDF; MJfox & PAN). We mourned the loss of one of the greatest, Muhammad Ali, who is as much a hero outside as inside of the boxing ring- although, his legacy of courage under fire will live on.
Yet, I am afraid that we have just begun to scratch the surface of one of the most intricate neurological diseases known. One way in which we can continue to peel the layers is by raising awareness nationally as well as globally. The world Parkinson’s congress held this year in Portland brought more diversity than years past helping to disseminate information at a faster rate. We have to take advantage of the fact that the biggest sources of information in any disease especially neurological diseases is not from any doctor’s office but rather from other patients like ourselves. This is especially true in the Hispanic community. So, in order to ensure that accurate information is disseminated is for all of us to share the knowledge we possess with people in the health sciences and healthcare fields and begin an open communication to begin filling in the gaps both sides have. Only when you merge the knowledge can we have effective advocacy to disseminate sound information that will truly elevate and help live a more productive, healthier, happier life despite PD. In the absence of this we will continue to have discrepancies in diagnosis which is only harmful to us the patients and our families.
In light of this, how do we then begin to raise awareness along with the standard of care for the families and nearly 10 million people who live with Parkinson’s worldwide?
I would say that the seed to help others understand the in’s and out’s of PD starts with self-love. First, we need to accept our diagnosis not really liking it but just as another life experience from which we can learn and grow from. Don’t get me wrong just because I have accepted living with PD does not mean I am not doing my best to kick its hinny, or that I don’t get worried or frustrated about being forgetful, unable to multi-task, care for my daughter at times, or even practice my beloved profession. However, by owning our disease we can then become an asset to others who come after us, as I have attempted to do over the past few years. Not only can we educate each other and to our physicians by opening up about the things that embarrassing, frustrating, down right infuriating at times, as well as the things that matter most to us in life and in battling this illness, leaving aside the shame which only serves in my experience to make life more difficult.
However, I understand that sometimes we are best able to start the conversations of salient matters in a more intimate setting like a support group. As many of you know from personal experience, support groups are the veins of the vine, the life line to living well with PD and bringing insight back to the health care professionals and vice versa.
Yet, the reality is that not everyone has access to a support group because of distance, economics, place of residence, etc. Thus, how does one have access to this? Of course there is always social media which can bridge any socio-economic or distance. Another option is starting your own group if you prefer something more intimate, personal and face to face which affords the benefit of having closer people in the same community to lean on when times get tough, because we all know it takes a village to make PD work for us.
Few tips to finding and starting a support group:
First, find one where you feel loved, comfortable, and free to be yourself …where your needs will be addressed, in social media or in your community or both. These groups can make a difference between a barely bearable existences to one worth living to the fullest.
So how do you become involved with one of these?
Look around at your community to see if there are some groups already established. Ask your friends, your health care communities, the various Parkinson’s organizations, go online. If there are multiple groups in which you are interested attend a few or all to get a feel of the vibes…
For instance if you are young person with PD, you might prefer to join a young support group, a women’s group (because gender issues are different especially if child rearing), or single people with PD, or even one based on PD status like already had DBS (deep brain stimulation) and such. I, myself, truly enjoy meeting with other women with and without PD because independent of our health status most of us share same goals and life challenges like working and having kids, being a mother, a wife etc. Sometimes we simply feel more comfortable in expressing ourselves or talking about sensitive issues if we are surrounded by similar minded individuals. But, above all choose wisely. Stay open to others ideas.
If no such group is available that touches your heart or seems to meet your needs at the present time consider starting a group of your own.
However, before you take such an undertaking seriously think about your health, your time constraints and more important your physical limitations. Is this going to put undue stress on your physical and emotional well-being? Can you handle the responsibility alone or would having one or two people to co-create and share responsibilities for the group work better?
- How often do you want to meet and where? Monthly, quarterly etc. keep in mind meeting on a scheduled basis is easier to remember and have greater attendance.
- How are meetings going to take place- have guests all the time ( this can create a lot of work for one person), or once in a while like special events, are the group going to be free to talk about issues or one person is going to lead?
- Is there a need in your community which has been unmet
- Is the place accessible to people you are trying to reach? Look for large rooms that are free like a public library, assisted living, nursing home, or hospital conference room. But, make sure this place has good parking, handicap accessibility and preferably access to public transportation.
- Time of day for meeting is also extremely important which has to take into account the age group of people trying to reach, are they retired or employed, can they drive themselves or need rides?
- Are you opening the group to patients only, caregivers only, both?
- What are the meetings going to look like? A lecturer/guest speaker? Open exchange of information, stories? Both? Participate in activities like painting or singing?
- How do you plan to get word out to community? Flyers to doctors, place ads in newspapers – note: some communities allow free advertisement, also may get help from hospital, nursing homes, assisted living etc. A web page/ social media can be the easiest most affordable way of getting word out. But, don’t forget about the old phone which always works among the elderly and some groups.
If you are reading this then you are already involved most likely in a support group or perhaps still feel isolated now you have some basic information to help you start the New Year on a positive note knowing full well that you are loved, you matter and are not alone and together we are going to make 2017 the BEST year possible by breaking down barriers one small shuffling step at a time!
Happy New Year 2017!!!
All the best from the desk of Dr. De Leon a.k.a. Parkinson’s Diva
Stay tune for my new book coming out next year-