I wish someone had intervened…

defeatparkinsons:

Must always find the unique talents for each child and person so they can achieve greatness and fulfill their God given destiny.

Originally posted on Living Differently:

little princessAbove:  Conventional school made this creative-creature very, very miserable.

Every time I read this story, I get a bit emotional…

Gillian was only eight years old, but her future was already at risk.  Her schoolwork was a disaster, at least as far as her teachers were concerned.  She turned in assignments late, her handwriting was terrible, and she tested poorly.  Not only that, she was a disruption to the entire class, one minute fidgeting noisily, the next staring out of the window, forcing the teacher to stop the class to pull Gillian’s attention back, and the next doing something to disturb the other children around her.  Gillian wasn’t particularly concerned about any of this – she was used to being corrected by authority figures and didn’t really see herself as a difficult child – but the school was very concerned.  This came to a head when the school wrote to…

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Changing the Tides of PD Stigma from Whispers and Staring to Support and Caring! By Dr. De Leon

embarresed

I have been dealing with Parkinson’s disease patients and their families for 25 years. During this time, I have seen many great changes in the science of Parkinson’s and great strides have been made in improving the quality of life of those who suffer this illness yet despite all the advances one thing that continues to plague my mind is the stigma many of us who live with PD continue to face on a daily basis.

Many of my previous patients and newly diagnosed friends continue to hide behind a cloak of invisibility for fear of being ousted, made fun of, or ostracized in public. This fear can be more freighting when you live in a small community as I do. Having a tremor or experiencing gait difficulty may suggest to someone that you are anxious or nervous or even inebriated. I have had to write letters and defend patients who were accused of DUI’s due to their neurological illness one time too many. While speech impediments that accompany PD may falsely convey to someone, who is unaware of the condition, a possibility of intellectual disability. Well, no wonder going out in public can be terrifying for many of us and prefer to hide in the safety of our homes where our intellects are not questioned!

Although our motor symptoms can invite a lot of open stares our invisible non motor symptoms like our depression, memory loss, bladder problems, can be even more challenging and bring forth a lot more harsh judgment from others if we try to hide our disease from others who won’t understand why we keep forgetting things or having to go to the bathroom a million times. Instead they might formulate erroneous thoughts like we are not very competent.
Sometimes, even well meaning people can contribute to the stigma by making comments like you have PDF and you are able to do that!

You are UNBELIEVABLE!

Sometimes, people can be cruel to the point of singling out someone out repeatedly, otherwise known as bullying. These individuals will mimic the impediments of the chronically ill, such as PD persons, to the point of causing PTSD (post-traumatic-stress -disorder) in some of those individual’s.

I have personally witnessed bullying in the nursing homes and assisted living communities where the more able pick on the less able in scenarios that play out like a movie scene from “Mean Girls.” Unfortunately, my experience with bullying has been at times more personal than that. I, too, have experienced firsthand the staring, pointing, and negative comments of those around me when I have found myself unable to ambulate without use of a walker or cane. These types of negative commentaries and reactions were extremely upsetting to my young daughter which in turn made me sad for the fact that she had to witness such cruelty.

It did not bother me they were poking fun of me rather that they made her feel bad which made me mad for the ignorance that led to this behavior. I was not ashamed of having PD but suddenly felt bad for all the neurologically ill persons who have to deal with this on a daily basis. I realized and explained to my daughter that their comments and attitude were more about them than about me and my illnesses since they were willing to expand so much energy on a stranger.

Since a lot of the time, cruelty and bullying come from ignorance, lack of knowledge, and understanding. Therefore, it is important that we educate others about our disease. But in order to do this effectively and efficiently, we ourselves should not be ashamed to have the illness or be disabled, or shaky or slow. Embrace your illness and teach others about what it is like to live with PD; by doing so you will be empowered. How do we expect others to understand us, be compassionate, or have empathy when we ourselves are ashamed?

The stress caused by the stigma of the disease can exacerbate our underlying neurological disease. So YES, you are bound to shake even more as you step out in public as you fear the scrutiny of those around wondering why that slow, crazy old lady just can’t be still or walk faster?

How do we deal with this?

Counter the culture:

Dr. Corrigan says that “self -stigma is an egregious impact of stigma in general, a diminished sense of self esteem leading to a ” why- try ” attitude in many people.” We need to put the power back in the hands of those suffering with the illness- you the patient!

The first thing you have to do is be kind to your own self- less critical of your impediments. A lot of times in my experience is our mental image of ourselves that gets in the way. Others may not even notice a problem. other times, people are scared by brain diseases simply because the brain still remains a mystery and symbolizes the epitome of ones being. Others are scared about what they heard which in my opinion usually is a lot of myth with little bit of facts. It is up to us who suffer with the disease to set the record straight and educate our neighbors, friends, and people in our communities.

A Rehabilation Professor at NYU Langone Medical Center  urges individuals to let go of their biases and  learn more about their illnesses, “this allows the person to maintain an active role in society and, ultimately, a sense of dignity, ” she says. Which is what I encourage all my patients and friends to do.

From experience I know that

    1. Patients are the best people to advise and educate others about their illness; that breaking down barriers starts with the individual letting down his or her guard and letting others in. Once you are willing to be vulnerable and let others know you have PD, you will find that a person’s attitude will change from skepticism to total support or PD champion.
  • Thus, not only do I teach about PD to health professionals and lay people alike but I also teach regarding the perils of adult bullying in the community as it pertains to chronic neurological illnesses like PD. Meantime emphasizing that in the elderly- aggression and bullying can be the initial presentation of a neurological disease such as PD itself.
  • So let’s all do our part and turn staring and whispering into caring and PD supporters.

Sources: Stephens, s. ( February/ March 2015): ” Overcoming the stigma: turning staring into caring.” Neurology Now. 34-38.

Parkinson’s disease: the basics – bit.ly/basics-PD

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

Tips for Getting Ready for Surgical Procedures When You have PD: By Dr. De Leon

surgey pic for dummies

“I  had plastic surgery last week. I cut up all my credit cards.” Henry Youngman

As I get ready to undergo yet another diagnostic procedure I am reminded about the possible perils of navigating conscious sedation and anesthesia with PD.

One of the hardest things is being asked to stop your medication the night before a procedure. Depending on your stage of disease this can range from a mildly uncomfortable feeling that can be endured with little discomfort to a downright painful and excruciatingly difficult experience to tolerate that may seem never ending because of the withdrawal symptoms. Then there is the stress of having to undergo a medical procedure to really kick up the use of dopamine in your brain making your Parkinson’s symptoms seem that much worst.

Until I had PD myself I never truly understood how hard it was for patients to be asked to stop their medications. I knew it was not a good idea to make someone stiffer, shakier, have more trouble swallowing and breathing when undergoing general anesthesia.  This is the time we want patients to be the strongest to not only make extubation easier but also decrease aspiration pneumonia around surgery and allow for faster recovery. So why would we want to stop all PD medications? Besides, we would not want increase in pain meds because they are off. When I am off my PD meds the biggest problem I experience is the severity of pain which is so severe it causes me to almost black out. Not a good feeling! Unfortunately, not all PD medications are compatible with anesthesia like MAO inhibitors so meds like Azilect do have to be stopped prior to surgery. And because aspiration and vomiting due to anesthesia need be minimized patients are asked to not eat, drink, or take medications.

But, sometimes surgeries can be delayed due to unforeseen problems as it happened to me with the last surgery. I was scheduled for surgery at 8 and did not actually go to OR until 1pm. So not only are you starving but the time without medication can be prolonged unexpectedly causing greater discomfort.

Things to do to avoid being caught in scenarios where you are stressed more than you have to.

1) If you take Sinemet ask for your physician to write an order for you to take Parcopa in its place throughout surgical procedure to avoid Gi tract. Since this is an orally disintegrating formulation fast acting? If surgery is delayed it can take another dose at your scheduled time. Of course if you are on IV pump this should be able to be continued unless they are working in area where pump is placed.

2) you can still continue with the dopamine patch agonist NEUPRO during surgery.

3) ask for scopolamine patch prior to survey to avoid nausea and upset stomach caused by anesthesia and being off your full regimen.

4) If being off or not eating for long time causes migraines again you can still receive treatment with orally disintegrating Triptans (e.g. Maxalt).

5) Try to be the first case of the morning.

6) If an elective procedure do when you are at your strongest and make sure your neurologist/MDS fine tunes your medications to ensure maximum outcome.  Do not put yourself at an unnecessary risk for an elective procedure (non –life threatening or emergent). As I had to postpone my father in law’s surgery because his breathing was too weak and did not want risk of having trouble coming off the vent after surgery.

These tips should help you ease your discomfort as you prepare for surgical procedures.

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

Tweeting for Parkinson’s Disease

defeatparkinsons:

faith is the glue that keeps us together!

Originally posted on Parkinson's Women Support:

Art by Cindy DeLuz Art by Cindy DeLuz

Like the Nelly Furtado song lyrics, “I’m like a bird, I’ll only fly away,” people with Parkinson’s Disease perched on Twitter today for a hour of #FoxPDchat on PD and genetics with #23andMe and @MichaelJFoxOrg. Yes, it was a little disjointed as 140 character dialogue is bound to be, but the excitement was like a gathering of birds when they descend en mass on a wire for a breather before continuing their flight.

There was an incredible willingness of Parkinson’s people to log on during the work day to discuss genetics. A sense of power in a community rallied on quick notice to participate in discussion about a disease that affects generations of families throughout the world. The genetics counselors who were willing to fly in—if only for an hour to flutter for Parkinson’s Disease is a happening worth a flock of tweets. Thanks to MichaelJFoxOrg and 23andME for showing…

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