Parkinson’s & My Love for Fashion: By Maria De Leon

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” Style is a way to say who you are without having to speak.” ~ Carolina Herrera

Image-“Red Shoes” by Ross Webb

 

As you all know I am a fashionista at heart and having PD initially put a damper on my love of shoes and actually diminished my collection because the initial foot dystonia and pain caused me so much discomfort that it was hard to work. In my profession as a neurologist, I had to stand and walk a lot. The burning, searing pain along with involuntary toe movements made it extremely difficult to wear some of my favorite shoes. Erroneously thinking it was the shoes I was wearing the culprits of my pain, I got rid of many pairs including some very cute and stylish red shoes which I absolutely loved. In my practice I was known as much for my shoes as I was for my hugs so having to change was a huge deal. Due to my severe discomfort, I was then forced to wear tennis shoes for the first time in my life which I absolutely abhorred but unfortunately it was the only thing I could stand on my feet.meshoes

Of course after my disease was confirmed, in the process of stabilizing my doses, it was difficult to walk with my stilettos and even chunky heels if they were higher than an inch. Because of initial poor balance and mild stooped posture wearing heels only served to shift my center of gravity forward causing severe back pain along with increased unbalance. However, even though there was a time of a year span in which I had to use a walker and barely able to lift my feet I never lost sight of being able to wear beautiful shoes again. Although, I did have to accommodate and find a new way of meshing the styles I love with the practicality and comfort required for someone who has PD. Fortunately, there are so many choices to choose from compared to even 20 years ago.

PD has not stopped me from loving shoes and looking for stylish comfortable pairs that would work with PD rather it has become another challenge to thrive on. I have discovered that I am unable to wear high shaft boots without zippers – hard to put on and nearly impossible to take off. Never mind the off balance waddling that sometimes would occur if begin to shuffle while wearing them.

Thankfully, as I have improved with medication and therapy, I am so happy to put away my tennis shoes which I hope not to see again for a long time. So in the last couple of years, I have been once more augmenting my shoe collection. I find that sometimes, the best therapy for self-esteem and empowering of a woman particularly one dealing with chronic illness like those of us with PD is retail therapy especially shopping for beautiful shoes. This was certainly the case for me this past month. After being hospitalized and being poked and prodded over the last two months, I needed some new shoes to parade about as I slowly regained my composure and returned to my normal Parkinson’s diva self. Although, it began as a simple trip to the mall with no expectations, other than just get out of the house and spend time with mom it ended up being one of the most rewarding and fulfilling shopping spree I have had in a very long time. Particularly when we found this one shoe store that had so many new styles and colors for the fall season mom which happened to be 1/2 off. I love nothing more than buying beautiful shoes at an affordable rate. So I bought grey booties & stylish suede loafers, blue high heel espadrilles, red pumps, my very first pair of brown leather boots in a very long time (since brown is usually not my color), and an evening shoe which happened to be leopard print… no one can be without a high heel animal print to put some fun and mischievousness in a woman’s wardrobe.za

The outing was an exhilarating one which prepared me mentally to continue my PD fight to show PD go is boss. With my new fall collection at my disposal, I am poised once more to continue my work with women in PD alongside health professionals, law- makers and women with PD everywhere. Today, as I finished discussing my impressive shoe collection and latest spree with my sister-in-law, I came across an article I had missed about another young professional with PD who seems to love fashion and shoes as much as I do. She too appears to have amassed an impressive shoe collection as I. But, I must say that at least in her pictures her shoes are better displayed than mine which sometimes end up on the floor because I am too stiff to bend over to pick up. I, like her, am using my love for fashion to increase strides in the neuroscience of PD while empowering other women (you) with PD to do the same. Go ahead use your own fashion sense and favorite shoes to show PD, you still have the upper hand. As the moto for this blog site goes… ” a woman can conquer the world with the right shoes!”

Tips for wearing stylish but safe shoes  with PD :

Be accessory conscientious – don’t buy shoes with lots of traction if freezing nor slippery ones if tendency to fall

Don’t get frazzled and tied down – if you have tremors that are hard to control don’t want shoes with lots of stamps or dainty clasps which are nearly impossible to tie. Wear ones with big zippers on the side or one with big buckles better yet slip on if having trouble bending

Always keep a spare as I often do when I travel I wear lower heel more comfortable shoes that I can change easily when I arrive to my conferences and a more stylish chunkier heel or dressier shoe is called for.

copyright-2016

all rights reserved – Maria De Leon MD

Is there still benefit to doing a Levodopa Drug Holiday as PD treatment in this day and age? by Maria De Leon

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 ” A vacation is what you take when you can no longer take what you’ve been taking.”

~ Earl Wilson

 

As we celebrate Columbus Day weekend, I am reminded of another holiday we don’t uphold much nowadays– levodopa drug holiday! Since we were first diagnosed with PD and introduced to levodopa, all of us who live with this disease have come to realize the wonderful effect one little pill can exert over our minds and bodies making us forever be holding to it. Yet, as an addict that tries to recapture the first sensation or effect of a drug, we too continue to take our Parkinson’s drugs daily in hopes of making us feel like ourselves once more. But, as with anything that alters the chemistry of our brains, levodopa effects also wean over time requiring a larger dose to have similar effects on our bodies and minds. This in turn leads to greater potential of abnormal or unwanted side effects the higher dosages or length of time we take these treatments like dyskenesias. Even when you stop taking these medications, you can never go back to a de novo state – your dopaminergic and entire brain network is forever altered.

For me nearly 10 years of taking medications for my PD has meant recent development of serious side effects like arrhythmias and malignant hypertension as well as chest pains. These terrible side effects prompted me to start thinking more and more about ‘Drug holidays.’ As I have tried to regain control of my PD symptoms and my quality of life, by bringing a balance of drug efficacy and minimizing drug induced nasty effects, I began thinking about the many PD patients I have treated over the years. Several of my patients I was able to management effectively only by giving them a much needed ‘drug holiday.’ Of course a lot of this occurred before we had so many new drugs to choose from and DBS (deep brain stimulation) was not as widely used accepted or approved as of yet in our armamentarium against Parkinson’s disease. The purpose of these so called holidays was to restore balance and well -being for those having dyskenesias, motor fluctuations and other unwanted difficult to manage or live with side effects. The idea is not unlike that of Huxley’s Brave New World where people (in this dystopian society) took “soma holidays” to induce a state of total relaxation. In our case these much needed holidays were designed to improve or restore quality of life by decreasing drug dose and subsequently reduce side effects.

I am not really certain when we stopped offering drug holidays from levodopa as a another tool but it seems long gone are those days we neurologists / MDS used to employ this now unorthodox practice in the treatment of our advanced PD patients.

Why did it ever stop? Perhaps, because we felt that we could manage patients symptoms successfully with new drug treatments as well as prevent some of the unwanted problems altogether with the advent new, better, and more specific drug treatments. For the most part this has been the case since as a whole we are now able to delay dyskenesias by addition of longer acting, continuous delivery of drugs; yet there are some people like me that eventually will build tolerance to these PD drugs or somehow develop antibodies to treatment drugs as in other neurological disease states like Multiple Sclerosis – (or even be part of a small group of individuals who naturally possess antibodies to particular drugs such is the case with a small subset of people known to have antibodies to the class of medication known as beta blockers). Although no one has ever looked at this phenomena in PD patients to date, there are now new quick techniques emerging which can tell us with certainty what medicines we can and cannot tolerate. Perhaps we should start using and taking advantage of this new technology to aid our patients in being able to achieve a higher quality of life particularly in patients like us with chronic illnesses such as PD. All it requires is swabbing of the cheek and voilà. As I await for my own, I decided to undergo a levodopa holiday myself.

Although several studies have confirmed the benefit and was widely practiced during my training, some still believe the practice to be risky and controversial particularly for those in late or end stages of PD where this technique was believed to be best suited. This type of procedure always required close supervision by a physician and very often required hospitalization. We used to withdraw patients slowly of their meds and placed them on amantadine. Similarly, I undertook the same route of withdrawing myself of all my Parkinson’s medications while staying only on amantadine. I would not suggest anyone doing this on their own without first discussing in full with your MDS/ treating physician. If your physician agrees, he or she will most likely insist in a hospitalization or very close supervision. I discussed with my physician and was in the vicinity of the medical center everyday should there be any problems. The reason for the close monitoring is due a potential complete paralysis which can occur from a rapid sudden withdrawal (the common way of doing in the hospital setting). Of concern when doing this is paralysis particularly that of respiratory and swallowing muscles. I was at lower risk of developing profound paralysis because my disease is not end stage nor am I having motor fluctuations or dyskenesias and I was not taking a very high dose of levodopa. Furthermore, rapid withdrawal of levodopa can cause severe autonomic dysfunction and a syndrome known as neuroleptic malignant syndrome and/or ocular gyric crisis where eyes deviate involuntarily.

In cases of drug holidays, a gradual reintroduction is usually more successful minimizing potential for side effects than reintroducing drugs at previous dosages and schedules. Usually patients confirmed in a small study of 16 patients can go back to taking half doses which in turn result in fewer unwanted side effects.

Based on my knowledge and experience, I stopped all my meds except amantadine – felt wonderful for two ½ days especially intriguing were the fact that my arrhythmias, chest pain and extremely high blood pressure normalized immediately. After this, I slowly began having increased stiffness, slowness, restless legs, and hypophonia. As the week went by the severe stiffness of my axial muscles triggered an excruciating back pain leading to severe radiculopathy and difficulty walking due to pain and radiculopathy not to mention return of increased frequency and urgency which was not fun especially since I could barely ambulate. I then developed some mild swallowing difficulty. It was clear I needed to reintroduce my medications before I worsened. I resumed intake of my Neupro patch at previous dose which decreased my bladder symptoms and aided in my slowness and stiffness but brought on once again some irregular heartbeats. Thus, I opted to decreased dose to half which stopped abnormal heart beats but once again worsened my pain and stiffness. Thus, slowly I reintroduced levodopa but at a lower dose than previous which stopped the back pain and stiffness. However without the aid of the Neupro patch and Azilect the wearing off of levodopa was much more pronounced. Subsequently, I restarted Azilect which invariably led to an increased my blood pressure once more and irregular heartbeat. In the end I have decreased my levodopa only as well as taking alternating smaller doses of both Neupro and Azilect. I am doing great except I have to be more mindful of my dosing schedule otherwise I feel the wearing off much more pronounced- still tweaking.

Good thing is that I was able to cut down not only my PD meds but also I have been able to cut down on my blood pressure medication. On the down side, reintroduction of medications has returned side effects I no longer had such as my nausea returned even with intake of Zofran and having wild crazy dreams due to medication effect. I trust I will develop tolerance once more and these will disappear.

So this holiday weekend I am once again enjoying myself with my family thanks to having had a nice drug holiday….

When all else fails take a ‘drug’ holiday and start a new with a new lease on life and better PD control.

I like to see this practice return as an option …how about you?

Sources:

https://www.researchgate.net/publication/16005903_Drug_holiday_and_management_of_Parkinson_disease

https://www.ncbi.nlm.nih.gov/pubmed/3793959

https://www.ncbi.nlm.nih.gov/pubmed/17370308

http://onlinelibrary.wiley.com/doi/10.1002/j.1552-4604.1986.tb02969.x/abstract

https://www.ncbi.nlm.nih.gov/pubmed/3793959

copyright-2016

all rights reserved – Maria De Leon MD

A week in the life of a Parkinson’s diva- by Maria De Leon

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“It is a beautiful thing when a career and a passion come together.” ~unknown

It is always nice when things work out serendipitously. What can be better than combining one’s own passions?  I tell you there is a great joy when your passions and interest and mesh together as it did this past week for me.

I was forced to be on a strict diet for the last 3 weeks in preparation for this past weeks poking and prodding in order to rule out any underlying recurrent cancer. Not being able to eat seafood, nuts, pasta, bread, or  dairy products was a challenge. Particularly when my to go snack is a handful of nuts. Plus, having teenagers around who are constantly foraging and gravitate top these same food groups did not make it any easier. I must admit it was hard and had to sneak in a couple of bites here and there of bread. Mom making fresh flour tortillas for breakfast did not help in the least.

So of course when my tests were done despite having severe nausea and feeling weak, I headed straight to an Italian restaurant to indulge in some lentil soup, and chicken sandwich loaded with mozzarella cheese, only after taking Zofran.

I was so extremely overjoyed to enjoy food once again that although the nausea seemed to have returned after eating, I could not pass the opportunity of visiting one of my favorite clothing stores-TALBOTS- love their red doors! Especially since there is none close to home. Plus,  I was sad I would have to miss yet again another great customer “party.” To my surprise, they were in the midst of hosting a fashion show. Of course this delighted me completely and quickly found a spot to sit. Initially, the nausea, heat and hot flashes from the small radiation doses I had received were extremely distracting. But as my husband always says “where there is a ‘Bebe’ (one of my many nicknames) there is a way.”  Surely I was not going to miss this fashion show and special prices event which I had stumbled into fortuitously just because I had some side effects to the treatment and was stiffer than usual.  So for a while I simply sat there quietly enjoying the ambience wishing I could feel better so I would not be sick in the middle of the floor. I stood once again and made my way to the table of delectable goodies to grab some cold water to take more pills when one of the attendants asked me how I was liking show. Trying to be polite and making small conversation so I could return to my seat, I asked how the models were chosen? she then proceeded to ask me if I would be interested in modeling for them at their next event.

Seems like suddenly I was experiencing another ‘Kamehameha’ moment all over. When we were in Hawaii over spring break while doing our usual touring, I began to experience severe discomfort which escalated to more intense pain in my back as we were walking. but suddenly upon reaching the site where King Kamehameha statue is located in Honolulu  because it is the headquarters for the T.V. show Hawaii- five- o, I became so enthralled that my pain and all discomfort dissipated completely- forever known in my family as the ‘Kamehameha effect.

Image result for king kamehameha statue in honoluluT

Having regained some energy, when the national sales manager Pam approached me about what I liked about their products and fall line, I seized the opportunity to discuss possible partnership to do Parkinson’s awareness just like they do breast cancer awareness. After discussing my role in advocacy, my platform on women’s issues in PD and explaining my love for fashion and need for women with PD to feel empowered over their disease, she was completely on board. although, they could not endorse PD as they do breast cancer awareness, she was willing to take back to headquarters and in meantime offered to partner in the winter for a charitable event with their red winter wardrobe line which could involve several stores in the Houston area. Although, nothing is set in stone as of yet, the possibility of this is taking place is terribly exciting, more importantly the seed was planted. Like all fruit trees  even though they must be watered and cared for, a fertile soil is essential for it to take root and grow. Lets hope this new idea takes and leads to greater awareness in women (gender) issues within the Parkinson’s community.

Furthermore, I was ecstatic about the possibility that I mentioned it to a good friend of mine who happens to be a drug rep for Azilect and she took was excited by this that she said she would talk to her superiors.

After spending a week in my old stomping ground (Houston Medical Center ) and seeing patient after patient with PD many of whom were young women- the time to take action is now and what better way to bring women of diverse backgrounds together and inform on PD then through a fashion show. After all, as one of the world’s best fashion designers who happens to be a Hispanic woman like myself  – Carolina Herrera, once quipped : “the impossible does not truly exist for (a PD) woman only time to achieve it.”

Together we are strong

Together we can #end PD

copyright-2016

all rights reserved – Maria De Leon MD