battling stigma in PD, Parkinson's awereness, parkinson's disease

Raising PD awareness ONE shuffling Step at a time. : By Dr. De Leon

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 (Accorda) 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? IMG_0001.JPG

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?

Think about:

  1. 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.
  2. 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?
  3. Is there a need in your community which has been unmet
  4. 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.
  5. 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?
  6. Are you opening the group to patients only, caregivers only, both?
  7. 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?
  8. 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-

@copyright  2017

all rights reserved by Maria De Leon MD

 

 

battling stigma in PD, parkinson's disease, Parkinson's Health, Parkinson's symptoms

When Hope is gone….by Dr. De Leon

Hope-

Webster defines Hope as “to desire with expectation of fulfillment.” It is more than dreaming; it is possessing within ourselves an expectation that someday a desire, wish, dream, or expectation will become a reality. Hope always looks to the future making our dismal todays bearable for a brighter, happier tomorrow…..without hope inevitably we die as something inside of us dies!

Two weeks ago, I had the pleasure of speaking at New Braunfels along with my friend Israel at the 7th PD symposium held by the wonderful people of Lone star Parkinson’s Society. My topic was depression and although the talk was very engaging I always feel there is never enough time to cover all aspects of such a complex problem.

Since, then I have been thinking a lot about this topic and apparently so has my friend because he has written two wonderful blogs on the subject which have gotten a lot of sympathy while acknowledging the existence of a huge dilemma which is often poorly understood and often overlooked and infrequently talked about in the open within our community.

Israel poignantly and openly discussed his own  personal battle with depression in “Looking over the edge” then discussed more in general the heartaches and struggles many of us have face in society and within our own families in “A Giant blow against the stigma that someone with depression is ‘less than’ in our culture” which can be magnified depending on our own culture especially if you are Hispanic like him and I were  asking or admitting for help in the mental department can be construed as a sign of weakness and almost taboo!  I also discussed my own personal battle with depression and looking into the abyss in my book the “Parkinson’s Diva.”

In the past and in my talks I often discussed things to do to prevent but other than in my book I have not much discussed in detail the 3 main reasons I feel we tend to become depressed. If we understand these basic reasons I believe all the other treatments can be secondary and we will be more likely to be free to discuss with one another our problems breaking down barriers and will be kinder to our own selves!

First look at the warning signs of depression:

Do NOT wait until you are suicidal!!!! This usually does not happen overnight!!

Before suicidal thoughts occur people experience the following:

  • Withdrawal- are you suddenly losing interest in social activities thing you like to do -e.g. going to movies, meeting friends, dancing, reading, painting, exercising, going out with friends, dressing up, is your color palette changed? are you wearing darker colors all greys? and is NOT because that’s the NEW style of the season!! This includes lack of intimacy/affection. Becomes a couch potato!
  • Lack of hygiene– not grooming- wearing same clothes for days, not showering, staying in p.j.’s all day!! or sweat pants all day and not because that’s all you have.
  • Change in eating habits
  • Change in sleep habits
  • Mood changes- irritable, aggressive, forgetful, tearful, sad, -cries at drop of hat even though sys they are not sad or depressed!!!!!

So when you start noticing these symptoms in yourself/or spouse/care-partner/caregiver points out these issues- first thing you MUST do IS OWN the FEELINGS!!!  WITHOUT BLAME – WITHOUT GUILT -THEY ARE PART OF BEING HUMAN!!!!!!

ONLY then can you begin to find the ROOT of problem and find healing-

USUALLY 3 Main Reasons:

1) In Parkinson’s disease as in any other chronic neurodegenerative disease which alters the chemical balance of the brain – depression is a big component particularly when we begin to introduce foreign substances to replace the brain’s natural chemistry. Such actions may have dubious and detrimental results as it did me when I took combination of Topamax and Amantadine each potentiated and magnified each others effect; thus, making me suicidal! Always and foremost when you feel yourself slipping before you are at the edge be honest with yourself ..

talk to your physician ASAP!                                         Review your medications!

2) Fatigue/exhaustion is the second common cause of Depression which can   lead us to make poor decisions at times nearly costing us our lives.  First of all PD can have intrinsic fatigue compounded by loss of vitamin B12 and D which worsens fatigue. If you are like me you don’t want to let PD have the better of you and you toil to regain the life that you once had but that is impossible!! the sooner you accept that and let go of the past and make new goals and live a new life within the compounds and framework of the new talents and skills learned and acquired via living with Parkinson’s the happier you will be. Remember life still goes on – there is a whole world out there outside of PD and it won’t stop because we have PD.  We have to learn to prioritize our time and energy and listen to our own bodies and not say YES to EVERYTHING even if it has to do with PD causes!!  Even Jesus said NO! He knew how to replenish HIS energy and HE is GOD!;  Don’t you think we need to listen to our own bodies? WE need to rest at times so that we can make the right decisions, think with clarity, don’t feel like the weight of the world is against us and more importantly don’t begin to feel overwhelmed to the point of losing hope because we can bear another day of struggle.  ‘Let’s not over extend ourselves and ignore that soft quiet, inner voice begging for rest.’ [Parkinson’s Diva]

3) In the end the most important reason, all of us get to the edge of that abyss is because at some point there is a faltering of HOPE!! The substance of Faith which propels all of us to move forward despite adversity against all odds is that deep feel that in the end things WILL work out!!! As Plato once quipped, “one cannot heal a body without first healing the soul.” Healing always comes from within and in all my years of practice, illness is truly a disease of the soul. it is how we perceive it, how we feel it how we deal with it- what we expect of it that truly makes one person be cured or live better than another with the exact same illness! sometimes we want to fill our void with things which don’t satisfy. Sometimes, we lose someone we love and that devastate us- but we should think if that love one would want us to give up and/or be sad?

Today, I say to you who are lonely, sad and depressed. You are not alone and there is no shame to feeling this way. It is perfectly Human !

REPEAT AFTER ME:

THERE IS NO NORMAL

NO PERFECT

& WE SHOULD NOT FEEL ANTHING OTHER THAN WHAT we feel- own up to your own feelings good or bad and move forward!

 We have all felt sadness; but if your symptoms are lasting over 2 weeks and not getting better and especially if having thoughts or wishing to DIE- need to talk to your doctor ASAP!

Finally, ask yourself is this because of medications? or family history ? or have I been putting myself out there so much taking care of everyone else’s needs I have neglected to take care of my own self?  Perhaps you simply have lost your way and lost Hope and find no reason for going on one more day! But I want to remind you that it is always darkest right before dawn so hang on just a bit more and light will come and things will change find a new reason for living take one hour at a time. Remind yourself how far you have come- how much you have accomplished to just give up and quit. Say to yourself, I have made it till today I can go one more hour and reach out to a friend -do not isolate yourself! Write down all the good things you have in your life when you feel despair.

If we dare to be free- we are going to have to exercise some courage and hold on to HOPE. We can live without food for a few weeks, days without water, 5 minutes without oxygen, but we CANNOT LIVE A SIGLE SECOND WITHOUT HOPE!!!

‘You will be secure, because there is hope; you will look about you and take your rest in safety.’ JOB 11:18 international version

battling stigma in PD, chronic illness, dopamine and parkinsons, medications in Parkinson's, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health, Parkinson's treatment, parkinsons dementia, parkinsons disease treatments, parkinsons symptoms, parkinsons treatments, parkinsons y tratamientos

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battling stigma in PD, bullying in PD, chronic illness, parkinson's disease, parkinsons health and beauty tips, stigma and PD

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