chronic illness, parkinson's disease, Parkinson's Health

Parkinson’s through time: by Dr. De León

“LIFE GOES ON…”

Hello my friends!  Happy Valentine’s Day to all my friends around the world!

As always, I appreciate each and everyone of you and thank you all for allowing me to be part of your PD journey either as a person with disease, caregiver, friend, spouse, partner, child, grandchild.

These last few weeks, I have been having a closer more personal intimate look at my old friend.  Aside from having new exciting PD projects in the works ( another women’s book in the making among other things);nevertheless, my biggest challenge is adjusting myself to a new stage in my life. Not only will I be celebrating very special wedding anniversary and 50th birthday this year but my Parkinson’s is slowly inching its way into a more moderate stage. Perhaps is not so much that my Parkinson’s symptoms have gotten   more drastic or severe, although I experience some wearing of more frequently than before in the form of dystonia. One of the reasons for which writing this blog has become more challenging. It is difficult to type and difficult to speak, so i rest my arm and voice like the famous opera singers and world class pitchers til is absolutely necessary to exert myself. besides waiting to try long acting drugs like 24 hour Opicapone ( comtan inhibitor) or extended delivery Goccovri ( extended amantadine)- I have had to resort to OT for construction of braces and scheduling ST to improve hypohonia because more and more my family is asking me to repeat myself or telling me that I never said anything which can drive someone mad. perhaps time for another round of botox in the works….but not till this bronchitis clears!

Further,  with all these changes compounded with increasing age and disease progression, the use of multiple medications and multi-system involvement of PD is beginning to cause cautionary breaks, problems, concerns on my part, my family and of course starting to get many more puzzled looks from specialists as they try to offer me the best care possible given my long list of systemic complications and drug -drug interactions. This is precisely why I always recommend having a very close relationship with your MDS and more frequent visits to adjust the sails for the change in course. we can all get away with taking minimal doses at the beginning and not see a doctor  perhaps once a year; but as we advance that time between visits  gradually needs to shorten in order to ensure you are receiving the best care.

First stage of PD, biggest problem to over come is getting right diagnosis, dealing with consequences of diagnosis followed by learning to live successfully with new disease as we find the right medicine cocktail with least side effects and maximum efficacy. Not an easy feat which may take a number of years, lots of tears, frustration and redefining boundaries with ourselves and every relationship thereof.

Second stage, I am beginning to realize more and more why-my Parkinson’s patients and many other people with illness suffer from increased isolation and depression due to only having so much time and energy. thus,  if we are not cautious we can easily over extend ourselves and become emotionally and physically exhausted. I swear I have never spend more time as a recluse as I seem to be more often these days.  I don’t want to go out, get dressed and put up a happy face when I feel miserable inside from pain, fatigue, and constant coughing . Bu,t i like to think that me taking this necessary time for myself will allow me to heal faster physically as i recharge my batteries but make a very concerted effort to not give in to illness nor seclude myself completely. One way i maintain my mental sanity and avoid feeling emotionally lonely, sad, or depressed is through use of technology.  I still do conferences via skype and communicate with friends via internet and go out when someone is able to drive me or the second i feel energized. It is extremely important that we redefine our goals at every stage, reevaluate or medications and also our support system. as our bodies change so does the effect of medicines. on average the dopamine medicines usually stop working at maximum capacity around 10 years- so I too am thinking of taking a bit of holiday but within 3-6 months they can be reintroduced and be good as new. with age our livers don’t function as well nor our kidneys compound this with beau coup medicines and our livers begin to have a harder time clearing things which can increase the side effects. Don’t assume that because you have been taking something for a long time without problems it will continue its same course. Simplify, Simplify!!  Always always look at possible interactions particularly those that may cause more trouble .

With each passing day, I gain further insight and greater appreciation for those living with chronic illnesses and have a new found respect for my own patients. i empathize with those who frequently rescheduled. when you become chronically ill when we are in need of a physician the most we are often not able to go because we cant drive ourselves or dress ourselves cant sit for a long time etc. So we either don’t go or go to ER. I have cancelled appointments more times than I care to admit. I too am working on a strategy to make sure that when I have appointments I find a friend, relative, or my husband to take me and not be so concerned about my appearance in public for that moment or be concerned that you are needing to ask for help. Really doctors don’t care what you look like especially if you are ill they understand! Plus, your friends, family and loved ones want to help they just don’t know how unless you ask. yesterday when my husband accompanied me to see the specialist i had a revelation. I was portraying my own feelings of inadequacy and insecurities on him thinking that he was somehow bothered by having to take me and care of me. Since i have always been independent. but turns out he said after i thanked him for taking time to be with me, ” i like taking care of you and would do more often expect you don’t allow me.” so don’t isolate yourself thinking you are alone in this journey or have no support because all those who love you and care for you will step up if given the chance.

You can do this.. life is but a continual dance sometimes fast sometimes slow but as long as you keep dancing you will always have fun.

@copyright 2018

ALL rights reserved by Maria De Leon MD

chronic illness, dopamine and parkinsons, parkinson's disease, Parkinson's Health

The Importance of Dopamine in Creative Expression: By Dr. De Leon

“We of the craft are all crazy. Some affected by gaiety others by melancholy but all are more or less touched.” ~Lord Byron

As you all know, I have had some major health issues setbacks lately which have curtailed my involvement in various activities including my bi-monthly blog writings. Main reason for this has been lack of creativity along with a lack of mental drive to get anything done. Of course having blood pressures fluctuate in a drop of a hat from 95/60 laying down to 200/95 sitting and even higher standing or mild activity such as dressing or bathing causing blindness a couple of times along with a TIA (mini stroke) did not help much either, which scared the living daylights out of me being a neurologist and all.

As I laid around mindlessly watching T.V. trying to stay calm and avoid any major excitement (difficult in my life at times it seems like), I caught some scenes of the movie -“A Beautiful Mind” perhaps many of you will remember this movie which won many awards for Russell Crowe’s portrayal of a brilliant mathematician (John Forbes Nash Jr.) who struggled with lifelong mental illness in the form of schizophrenia.

Following a stream of semi-consciousness, I began thinking about my own patients with mental illness over the years including those with Parkinson’s disease and the apparent connection of great intelligence, creativity and mental disease.  From ancient times of the Greeks important people like Aristotle thought that creativity came from the gods and the muses (the 9 daughters of Zeus). These were the mythical personifications of the arts and sciences.Image result for pietà michelangelo

One thing is clear to me and to many others who have studied this subject is the direct correlation of dopamine and intelligence. After all we know that this is the chemical responsible for learning and reward system. A study by psychologist J. Phillippe Rushton discovered that creativity was highly correlated with a high intelligence and traits of abnormal personality – schizotypal. Those who had a condition with known dopamine involvement particularly those with excess dopamine such as bipolar or schizophrenia (like Nash) were found in literature to be extremely brilliant and creative individuals. In my experience this has also been true, all of whom hated being on “treatment” which suppressed their dopamine because it ‘stifled’ their creativity and their originality causing them more often than not to go off their meds time and time again. We have example after example of great literary minds and artist who had significant neurological deficits who were quite prolific despite their disease. I believe, that this is greatly in part to the excess of dopamine circulating in their brains. People like Earnest Hemingway, Michelangelo, Virginia Wolf, Sylvia Plath, even Robin Williams.The Old Man and the Sea

Pondering about the subject of creativity it dawn on me that since I had stopped intake of my Rytary (Levodopa replacement), I had lost my spunk, mental acuity, including writing creativity, and worst again stopped bring interested in reading my favorite novels which everyone in my family noticed…this I believe is due to fact that reading a novel with complex story line requires a great deal of concentration and recollection which use up large amounts of dopamine.

Incidentally, as an aside reading is what I needed the most to regulate my blood pressure because studies have shown that simply emerging oneself in a favorite fictional book especially if already read and enjoyed can quiet the heart rate and lower blood pressure several points within a few minutes- so take out those favorite fictional novels out to Keep your brain and heart healthy!

However, since I began to feel the effect of lack of dopamine in my body after more than a week without it, I took my first dose again last night and behold I woke up with a brain full of ideas and ready to tackle the world once more, read, write and be creative. ( I won’t be going off my levodopa anytime soon again) Confirming that dopamine is the key substance needed to thrive in life and be creative. So in reality, this question of artistic expression in Parkinson is truly a simple one. Parkinson’s appears to be responsible for our new talents indirectly just as those with frontal lobe dementia due to excess of dopamine either by design of disease itself as in the case of FTD or by external supplementation in PD. Perhaps some of us have already been gifted with latent artistic talents that have been dormant for years unexpressed due to insufficient stimulation of our own muse. This would explain why people who undergo DBS no longer have the same creative expression as seen before the procedure because by design the operation is meant to reduce amounts of external dopamine required so people no longer have that boost to surpass the threshold into the creative realm.

Since a study of more than one million people in Sweden found a direct correlation between creative occupations and mental illnesses. This may be an area for further development as a way of doing vocational rehab for those of us with Parkinson’s disease who were forced to abandon our previous occupations. Something to ponder. As I continue to regain my own mental stability –recalling the day I first took levodopa, as a day when everything came completely into complete mental focus.

This weekend I will be relaxing with some dark chocolate curled up to a good book, maybe even enjoy some poetry!

 

Sources:

https://en.m.wikipedia.org/wiki/Creativity_and_mental_illness

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4041074/

 

 

parkinson's disease, Parkinson's Health, Parkinson's treatment

Tips to Over come Communication Impairment in PD: By Dr. De Leon

 

As we near the WPC 2016 which will be held in Portland, Oregon this year..one of the topics of great interest being presented is one of communication impairment.

First, we must look at what is meant by communication. The word  “communication”  implies the usage of  a deeper and complex network of interconnected neurons in the brain actively working to conceive, send, receive, and interpret  auditory, written as well as verbal & non- verbal messages. A problem or disruption at any point in this chain and we have ineffective or impaired communication. And as we all know ineffective or poorly executed communication can lead to disastrous outcomes.

For instance, there is a well known story which highlights this problem, a message given by a British Army Commander which stated: “Send reinforcements, we’re going to advance,” was lost in translation.

However,  reinforcements NEVER arrived because message received at command center heard instead:

“Send three and four-pence, we’re going to a dance”

A very humorous statement in the middle of a war but also quite out of place!

Not all communication failure can be as disastrous as this; yet it can be extremely frustrating for both the messenger and receiver. Lately, since one of my biggest problems with PD is actual voice related, I too am finding out how difficult it is to get things accomplish when those around you don’t get a clear message from you.

Why is this important?

  • Communication problems can be equally frustrating for all involved.
  • Person with problem of hypophonia  (low voice) or aphonia may become angry, irritable and isolated worsening an already existing depression or cause depression to ensue.
  • Some communication problems, such as having a soft voice, may be temporary and reversible with higher doses of levodopa. While other  speech related problems may be more permanent or caused by things like DBS implant or DBS positioning and activation of leads; in many cases leads may need to be readjusted because active electrical impulse is getting into areas of speech and affecting swallowing as well.
  • Sometimes medications, infections, dehydration, or depression itself  can cause difficulty in communicating with others due to the creation of confusion in the patient or person having these problems. the confusion then leads to an inability to state concretely or clearly their needs, concerns, or wishes. It is important to always review all medication with new onset of speech impediment especially when there appears to be a globally impaired person- not able to understand, read, write, or communicate verbally- we must exclude structural problems such as strokes and tumors in these individuals.
  • Of course the presence of dementia can also make communicating extremely difficult. This is a problem as 40-50% of PD patients are said to develop PD dementia after 15 years of disease. Thus, we have to take great measures to decrease risk factors especially as women are at higher risk for stroke but men are at higher risk for dementia and behavioral problems with PD. I recommend early screening as well as routine screening to avoid rapid cognitive decline when possible.

Whatever the cause poor communication can lead to depression and further isolation which only leads to a vicious cycle of increased deficits in communication and further withdrawal.

Identifying and solving communication problems:

As with most other problems in PD,  voice issues will develop slowly and subtly overtime. For instance, I have noticed that my husband and daughter are frequently surprised when I mention we are doing some activity on a given day which I had already mentioned to them before. After several episodes of me thinking I clearly stated something, I realized that they were no longer hearing me because I am developing softer voice. When I am completely aphonic, the communication is not as bad in my family because they pay more attention to my needs and watch for other non-verbal cues. But is the daily goings on that can be frustrating. Of course, as we age we tend to develop communication changes due to aging such as having poor sight or hearing which in turn can limit us as well significantly and in fact also cause much irritability if not able to hear or understand those around you.

Most people will seek medical help when things become bothersome enough or begin interfering with activities of daily living such as speaking in loud crowds or in a group, speaking on the phone, which I am beginning to have some degree of difficulty. Also everyone’s degree of impairment in their social life may be different even if the deficit is the same. this depends on each persons social abilities and needs.  If a person is a lecturer like myself than having any degree of hypophonia is significant  compared to one that lives alone and rarely socializes. Same goes for understanding written word. This can be a major problem if the person having these issues is the one in charge of important document handling.

Communication is a TWO-WAY street:

 Both the speaker and listener play an integral role as such both can and may need to alter their behavior in order to maintain a successful form of communication. one may have to try to speak louder and the other to make more eye contact and listen more intently. conversation requires all parties involvement- so tell your friends you cant speak as loud or cant hear them in loud places adjust your gathering environments rather than stop trying all together.

Make sure you get hearing tested- getting this done tomorrow.

Do speech therapy – which may include the LSVT- LOUD program to improve quality of speech and volume of voice. I think I will be enrolling soon. the speech therapist can also help with other types of communication skills like doing cognitive training or offer assistive devices to help you be heard and understood. there are a great number of assistive devices to aid in communication some are quite simple and inexpensive while others are more complex and expensive. May even consider choir therapy as well – for fun and perhaps may turn out to have some value in improving voice quality and clarity of speech.

The other great treatment available is collagen injections into the vocal cords which helps with voice volume.

 Don’t delay help and suffer frustration and isolation- talk to your physician asap .

chronic illness, parkinson's disease, Parkinson's Health, parkinsons treatments

Three things I wish someone had told me about PD : By Dr. De Leon

Not only is there still much to be learned about this extremely complex disease, as I mentioned in my article “What is wrong with me?” But, despite all the advances in the field there continues to be a great deal of speculation regarding life with Parkinson’s after the diagnosis. Today, I am exposing some of the truths you wish you had been told:

      1. It is difficult to maintain a traditional job once diagnosed with PD.

I realized that the old way of doing things was no longer going to work. This meant that my traditional job as a doctor was no longer going to fly simply because the level of mental acuity required would consume my dopamine stores faster than I could replenish them. Since it is difficult to maintain employment once diagnosed consider options such as a different venue/vocational rehabilitation. PD patients have been shown to perform well in creative roles, and doing repetitive tasks. Perhaps the new job lies in the use of the new found talent such as being an artist, photographer, writer.  But, most importantly need to start financial planning, including disability documentation if young onset and execution of will for long term care.

       2. It truly takes a village to care for a Parkinson’s patient.

Since Parkinson’s affects all of our insides, feelings and all, as well as our outside; living with PD while raising children, having a family, running a household, holding a job, and maintaining personal and interpersonal relationships is extremely difficult. Especially, as disease progresses you simply cannot go at it alone! You need others to help pick up the slack. Part of this network of support should include close friends, relatives, social workers, and PD support groups. Spread the wealth if you will with those willing to help out to avoid burn out in those closest to you like spouses.

     3. Prevention rather than reaction to symptoms is the key for a better quality of life with PD.

Intuitively, I surmised from treating my patients that indeed “an ounce of prevention is worth a pound of cure.” Yet, it took me a few years of living with PD myself before I fully comprehended the full ramifications of a proactive treatment for PD. As in the treatment of cancer patients, we first want the remaining dopamine cells to work more efficiently, and keep other cells from dying off. Hence, a cocktail of medicines works best. This treatment is maximized with constant surveillance for signs of new symptoms before problems arise. This requires a team of multidisciplinary experts including PT, OT, and ST. Remember the brain function’s like a see-saw, if you add too much of one thing on one side you are bound to get off kilter and go flying up in the air unwillingly and bounce back when that substance starts to wane.

WHAT are the things you WISH you had KNOWN in advance about living with PD?

Feel free to share.

parkinson's disease, Parkinson's Health, parkinsons symptoms, parkinsons treatments

#1 Cause of Cramping Toes & Legs In PD- By Dr. De Leon

“These cramps are crazy! But look on the bright side- at least is not a baby!” -unknown

 

In the past, I have written about the different causes of leg and toe cramping in Parkinson’s disease. However, the number one cause of cramping in those of us who have had Parkinson’s disease for many years is actually a metabolic cause indirectly related to PD Symptoms. What I mean is that we all have one singular symptom in common which is extremely trouble some for all of us despite our PD presentation. This horrible symptom which makes all of our lives particularly troublesome and even causes us to become moody, forgetful, and lethargic is no other than my friend and your friend-CONSTIPATION! Unfortunately, this is one of those symptoms that just wont go away! It often precedes the motor symptoms by up to 20 years and as the PD progresses not only does Gi motility slow down to a near halt due to PD but the medicines themselves are against us from the start.

So, how do we combat this pesky problem? throwing everything but the sink into our bodies sometimes just to be able to have a bowel movement. The thing we all forget is that with time the constant sloughing off the lining of the intestines by laxatives – especially those over the counter can cause severe Hypokalemia (low potassium) because it alters the function of the kidneys permanently!

To make matters worst, as we age many of us become hypertensive (high blood pressure) for which many receive treatment in the form of diuretics. This only compounds the problem and increases risk for cramps. Also, many of the medicines cause increase fluid retention again necessitating a type of diuretic.

 Therefore, I suggest that :

Featured image

1) Do not take laxatives on a daily basis – this only causes the body to become dependent and work even less unless higher amount (dosages) of laxatives are  consumed. I will suggest a cocktail solution for this which includes high water intake, increase natural juices, increase daily fiber in food and as supplement through over the counter fiber tablets, powder etc. increase exercise, increase vegetable and fruit intake along with stool softener. Then few times a week take prescription meds like lactulose, Miralax, Amitiza, or Linzess.

2) However, if above still not producing the desired effect – use over the counter laxatives –SPARINGLY! always alternate types such as enemas, mag citrate or other oral laxative brands-e.g. Ex-lax, Dulcolax… 

3) Have your doctor write you a prescription for potassium supplement 20mEq. EVERY TIME you take a laxative make it a point of taking a Potassium supplement pill along with it. Also increase consumption of potassium rich foods like white beans, lentil, raisins, pistachios, soy bean, avocados, and cocoa bean (my favorite)..

4) Have your doctor monitor your potassium routinely if staying low may need to be on a daily potassium supplement!

5) If possible avoid diuretics – try using naturally occurring diuretics like cucumbers, watermelon, tomatoes, green tea, asparagus, cranberries, and oats. This will also help to maintain regularity.

6) If you Must be on a diuretic if possible try potassium sparing medications -NOT LASIX.

7) Finally, if you do experience cramps quick remedy is a spoonful of mustard (keep packets handy especially when traveling) & drinking pickle juice- best when cold! If you are experiencing cramps multiple times a week and the other causes of pain and cramp have been ruled out then need to take daily potassium supplement and take extra dose when use laxatives!

References: (see prior blogs)

How to Deal with the 6 Common Causes of Leg pain in PD?

Tips to dealing with cramping toes

@copyright 2015 all rights reserved Maria De Leon

dopamine and parkinsons, fluctuations in parkinsons, Parkinson's Health, Parkinson's treatment, Parkinsons disease, side effects

Wearing off it’s hard to do! By Dr. De Leon

  “He stopped loving me in the thick of my loving him.

    He was finished but I was not.

 I felt like I had been stopped in the middle of an orgasm.” ~ Stopped by Carmen  R. Rutlen

When I was practicing I used to have an intellectual grasp of  the motor fluctuations ; yet never fully understood until I got PD as well. Cocaine being so similar in structure to dopamine, it binds at same receptor. Thus, I could imagine and understand how the euphoric initial response one gets with time would diminish therefore needing to escalate dose in order to achieve same response. In my training, I  was past the days where doctors as part of their learning of medicine experimented with compounds they were to use in order to better understand their effects so had to go on theory. Never did I dream that I would one day become a walking pharmacy and where my knowledge of pharmacotherapy would be put to the test repeatedly.

I often talked to my patients about the feeling of being ‘on’..and how long the effect of dopa lasted. However, I used to think perhaps due to my naïveté that patients could only feel the change as they advanced in disease. But, in actuality one of the tall tale signs that you do have a dopaminergic disorder is quick and exaggerated initial response to levodopa.  Several of my patients stated they could not tell any difference with levodopa or when it was in their system. This usually was a clear  sign we were dealing with atypical causes of Parkinsonism.

As I am sure those of you who have Parkinson’s disease can attest to the significant mental rush you achieved when you first started levodopa. I could tell exactly when it kicked in and when it wore off suddenly, the first time I took Sinemet (levodopa/carbidopa). I despised the sudden feeling of unable to focus and feeling spent. Some of you have agreed with me of experiencing same feeling independent of any motor changes. When we first took dopamine,  our minds felt “on,” more focused, alive- like you could conquer the world and felt a bit euphoric not unlike the sensation we all have felt when we were first in love. No wonder and not at all coincidentally, dopamine is the “feel good” chemical released when we are in love! Dopamine is released when we see our loved one looking back at us, or just think about the love of our lives makes our brains light up like a Christmas tree.

But, just as in life and relationships maintaining that constant state of  happiness, giddiness, and feeling high is impossible to do. Now, I truly understand why cocaine is so addictive. We all love the feeling of being in love. When dopamine wears ‘off’ suddenly is like experiencing an emotional and physical heart break over and over..

Some may say it feels like living you hanging in the midst of an orgasm. If we never give ourselves time to heal we will go down a dark path of depression building an emotional scab that bleeds at the slightest touch. When we lose our love, we feel hopeless, anxious,nervous, unable to sleep, or sleep too much, listless, tearful, aloof,  and experience physical and emotional aching. So are the feelings when we experience levodopa withdrawal.

In order to avoid these feelings what should you do?

One thing you don’t do is chase after that person or in this case keep adding more and more dopamine…only lead to more hurt, withdrawals and serious complications. We find support from others which may not provide as good of a feeling but will help to stabilize you and regain strength.

In order to avoid repeated break -ups with your medication and being a slave to it…a combination regimen is advised- you would never let one man/ woman rule your world right?  Neither should you do the same with PD meds.  to take a page from Mambo # 5 song  by Lou Bega, a little bit of  (dopa agonist) and a little bit of  (levodopa) is best way to go to keep you and happy and balanced …

In my  experience in years of dealing with PD from all aspects, a combination of the following drugs dopa agonists, with NMDA receptors medicines like amantadine, Mao – inhibitors, and compt inhibitors along with levo- dopa is the best way to keep PD stable  for the long run. Sprinkle of ssri’s ( Zoloft,lexapro), tricyclics ( eleavil, remeron), or SNri’s ( Effexor) on top is the icing to the cake.

With age comes wisdom, so they say! As our Parkinson’s  advances, it is ever so crucial to learn how to fall in love (using our dopamine) without losing ourselves in the process.

Parkinson's Diagnosis, Parkinson's Health, parkinsons health and beauty tips, tips for safe and happy travel with Parkinson's

 Tips & Tricks: Traveling with Parkinson’s Disease – Part Deux: By Dr. De Leon

 Tips & Tricks: Traveling with Parkinson’s Disease – Part Deux: By Dr. De Leon.

parkinson's disease, Parkinson's Health, Parkinson's treatment, tips for safe and happy travel with Parkinson's

 Tips & Tricks: Traveling with Parkinson’s Disease – Part Deux: By Dr. De Leon

I love summer not just because my birthday highlights the beginning of the best season where the days are long and the possibilities seem endless. But, because I always seem to rejuvenate during this time of year. As I get ready for my first real trip of the summer after an exhausting year, it occurs to me that since I have developed PD it takes me longer to pack my medications than it does my actual clothes and toiletries.  We all know PD symptoms can vary with stress, weather conditions, and other variables like sleep. Therefore we have to be prepared for the not so good days particularly when far away from home and even more if out of the country.

Tips for Traveling: walt whitman travel

As I had described on a prior blog “Tips & Tricks: Traveling with Parkinson’s Disease” always carry with you a complete list of medications (over the counter, natural supplements as well as prn medications).

You should also have your doctor’s phone number handy along with a letter stating diagnosis and medications needed including name, dosages, and times to be taken. As a girl scout I guess my motto is always to be prepared which means making sure that ALL of your medications fit into a small carry-on luggage that you can keep with you at all times. In this carry-on keep an extra set of clothes, undergarments (this includes disposable undergarments…there are many to choose from recommend depend because great variety for both men and women), snacks, and water (which can be easily purchased once go pass security.

  • Especially when traveling by plane during busy season or to certain regions of the country such as some famous ski resort areas even in the summer, they have a tendency to be delayed which may result in luggage being misplaced during trip. In Aspen since it lies in a valley surrounded by mountains, the departure of flights is very much dependent on weather. This was one of the first times, I experience crew talking about weight of plane in to take off safely. This means that you may leave but not your luggage necessarily. Believe me, it is easier to change clothes than have to wash clothes in a hotel or worst in an airport bathroom. If possible carry sleep wear (best something silky which allows for greater mobility at night). I can’t sleep in regular clothes. But, if there is no room in luggage, do as I do travel with extra comfy clothes like pants with elastic band made of combination Lyocell and spandex (and some cotton) because these will allow you to move with ease, not wrinkle, and is odor absorbent as well as breathable. The last two qualities are extremely important since a lot of us with PD tend to perspire especially under duress.
  1.   When booking a trip always ask for wheelchair assistance even if you end up not using it. This will give you peace of mind especially if you happen to suddenly need one because meds have worn off unexpectedly. Having a wheelchair available comes in very handy if connecting flights happen to be in opposite ends of the airport or if luggage retrieval is several terminals away.
  2.  Don’t get in a hurry. Pace yourself. Give yourself extra time to get to destination (e.g. Airport or ship boarding)
  3. Don’t make changes to your medicine regime on the day of travel or while on vacation since you don’t know what kind of side affects you will experience.
  4. If you are going to get a cooling vest, as I am carrying one for me and my niece who has medical condition requiring skin to stay cool, Don’t wear it while going through security. Guess what this vest looks like on X-ray machines?  Something akin to wearing a bomb strapped to your chest is the appearance of those gel packs next to your body inside the vest. If you don’t want to cause a huge incident video- taped and posted all over the media take the vest off. Also best to bring a doctor’s note to avoid confiscation by the TSA. The gel and filling may make them uneasy as well.
  5.  Don’t be ashamed or proud to ask for early boarding. Don’t be afraid to let the crew know your condition in case you may need assistance with meds etc. during the flight or out to sea.
  6. Further, make sure to bring a back up to your cane. Do you know how many times my father left his at restaurants, hospitals, public bathrooms, etc.? It’s good to have a ready replacement.
  • Although your primary walking assistive device is not a cane but a quad cane or u- walker some places are not as easy to navigate like small narrow brick streets of New England or some European countries. In these cases a walking stick or cane may be an alternative option which will allow you to keep touring or enjoying your trip. In my case, my large umbrella always serves me as a walking assistive device when traveling. This way I am ready for inclement weather due to rain or bad terrain. However, the umbrella must be a sturdy to sustain your weight and also handle severe winds up to 55mph. This one device also helps to provide shade and keep you cool when outdoors. Here is one link you may find useful www.innovagolf.com
  • If you depend on scooters for mobility look at place of destination to see if you can rent one or one is available to you which will make your traveling much easier. For instance, I have been told that in France, wheelchairs are now available to rent at local pharmacies. In Italy however, when I was there only 3 years ago, I found it extremely difficult to navigate at times as a person of disability. Any person using more than a cane would find little to no support in most places including big cities like Rome. Taking tours can be more than a challenge since most places are not handicap friendly (Made me appreciate the commodities and privileges we as Americans take for granted at times, even when cities are not as handicap friendly here in the States- they are superior to many European countries in which I have traveled). Wheelchairs are not easily available in a lot of countries.
  • While in Rome, I felt extremely bad for this one person on a motorized wheelchair and her daughter who were tour with us. Before they boarded, the daughter asked our guide if the place where we were going to was handicap friendly otherwise they would stay. The guide without missing a beat said, ” oh yes, we have elevators!” Needless to say, this was a large misrepresentation of the truth! As soon as we got to the gardens there was a large steep stairwell. I saw the disappointment and frustration in this family’s face. Seeing the anger the tour guide said:” don’t worry once inside there is an elevator! Turns out the elevator only went down two floors which did not even cover the entrance of the beautiful gardens …even myself could only see about a fourth maybe less of the spectacular scenery because the stairs were so steep and winding down forever; I was afraid I would be stuck at the bottom and unable to climb back-up since I was already experiencing extreme weakness.
  1. Make sure you do your research ahead of time and talk to other people that have traveled there before going.
  2. Wear sun protective clothing. We are predisposed to melanoma and UV rays can go through clothing especially bathing suits. Wear a sun protective hat and if you plan on being out in sun and beach may consider this link: http://www.coolibar.com/ Be aware that some medications like Azilect also make skin more sensitive to sun and if prolonged exposure can lead to rash.
  3. Also, remember that sitting for a long time in a plane can cause ankle swelling this is aside from the fact that some medications like NEUPRO, Azilect, Amantadine are known to increase leg swelling especially in women. Since the combination can lead to increase water retention it may be wise to get compression stockings to avoid DVT’s (clots) and improve blood flow. Look at the following link: http://www.tommiecopper.com/?gclid=CNbf0MmdwsYCFQtqfgodZLYC8g Also talk to your doctor about diuretics (water pill) as a prescription if this is a severe problem for you.

Now that you have everything in order- you are set to go! Have a great trip & Happy Independence Day everyone!

“Life begins at the end of your comfort zone!”

@copyright2015

all rights reserved by Maria De LeonMD

parkinson's disease, parkinsons health and beauty tips

Tips & Tricks: Traveling with Parkinson’s Disease: By Dr. De Leon

Spring break is fast approaching and many of us especially those of us with children look forward to this time of year to being able to travel as a family. Sometimes you even get to chaperone for fun on school excursions just as an excuse to see the world through their eyes! However, even though it now takes me longer to pack my medications than it does my actual clothes and toiletries, I still enjoy traveling whenever possible….( still have a million meds to pack- need a bigger bag just for this but could not do it with out my trusty world travel -diva bag!)
So, here a few tricks to make traveling a bit easier and not such an ordeal.
Of course, it takes more planning than it once did since traveling with PD is a lot more complex than if we did not have a chronic illness. Don’t be discouraged it can be done but don’t forget to keep in mind destination climate and time of year. We not only have to keep track of our meds but we also have to be conscientious of the temperature and other weather conditions in the areas of our destination because believe it or not extreme weather can make our symptoms worst as I am sure many of you already know.

General tips!

 Always carry a letter from your neurologist stating your diagnosis and medication list. This might avoid extra scrutiny or people thinking you are either drunk or mentally challenged.

 Always keep on hand your PD specialist phone number and how to reach after hours. Don’t forget the countries area code when calling if traveling outside of the US.

 Always keep your medications with you, that’s one piece of luggage you cannot afford to do without – trust me I know. Carry some extra in case you spill. I have a tendency to do this as many of you can relate, I am certain; also in case there are delays to your travel plans due to weather, illness, etc. Plus, carry a prescription and letter from your doctor in case you need or someone gives you hassle for carrying so many pills. I never had this problem but is best to be prepared just in case. Put your medicines in small plastic containers or bottles you can get from pharmacy or in a large pill box depending how long you will be away from home.Product DetailsProduct DetailsProduct DetailsProduct DetailsFashion Smart Pill and Vitamin Compact Travel Clutch Case (Fleur De Fash)

 Pace yourself, listen to your body. You know it better than anyone else. Try to keep routine and medications at same time – if traveling abroad, stay with the new time zone in keeping with medicine intake. Choose activities wisely and allow for down time. If planning on climbing Machu Picchu do at the end of trip so can recover at home and on plane on way back.

 Leave the ego at home. Fortunately, we now have so many tools at our disposal, please make use of them this includes folding canes with height adjustment, wheelchairs, laser canes, disposable undergarments, you name it. Don’t pay any heed to those staring who do not understand what we have to go through.laser-cane-parkinsons_tProduct DetailsU step walker with laser for foot placement

 Don’t underestimate the importance of a good travel companion especially if venturing out of comfort zone or internationally. A good friend or companion can Tips for traveling with friends... and staying friends.be a god send when you need an extra pair of legs or hands. Trust me, when I suddenly freeze because my back gives out from the rigidity of my axial muscles it is nice to have a plan ahead and a person to lean on to help walk with me to prevent falling and to retrieve my luggage is an absolute gift.

 Mentally notice all bathrooms especially when traveling internationally do not pass a good one since these are hard to find. Remember many charge to use the facilities as well as for the toilet paper. So carry your own toilet paper. Also most all older countries like Italy have only one bathroom for both sexes and toilets are really low with no toilet seats so a good companion not only will help to stand guard but can aid you in going to the bathroom.

1. Remember a lot of us have bladder issues so keep a mental note of location in case you have to hustle back but if don’t think can do this that’s what undergarments are for. There is an app to help locate restrooms but beware of international roaming fees.

 ESPECIALLY IF TRAVELING Outside of US or remote areas have your doctor give you prescriptions for Apomorphine in case need it ( make sure you know how to use and what to expect before using- the company now has 24hour hotline to assist),take sleeping pills, muscle relaxants, and pain meds like Vicodin. As well as anti-inflammatories in my experience a Tylenol plus a Motrin go along way for relieving most pain.

 When making reservations try using an agent that has dealt with booking trips for people with disabilities. Always purchase travel insurance best if you buy insurance from third party rather than travel agent or cruise ship. (AIG Travel Guard).

 Consider the climate of country where traveling- if during hot weather consider investing in a cooling vest. Consider Alaska in summer, Europe in fall, and Caribbean in winter.

 I also recommend a cruise, I am not a big fan of being in the middle of the ocean but a nice river cruise may just be what the doctor ordered. Smaller, easier to navigate has all the amenities at your disposal plus if you can tired or fatigued you can just go lay down. Plus, there is a doctor on board!

Don’t Forget to Have fun! In light of the fact that our Parkinson’s is progressive we want to enjoy life while we can so go on that trip you always wanted now rather than later. CARPE DIEM!!!

Bon Voyage!!!

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all rights reserved by Maria De leon MD