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/

 

 

caregivers and chronic illness, Parkinson's awereness, Parkinson's Diagnosis, parkinson's disease, Parkinson's Health

Parkinson’s disease and The Work Place: By Dr. De Leon

lucile ball

This is a classic picture of one of my all time favorite comediennes with a well known skit. Every time life comes at us fast, this is what I am reminded of.  Sometimes no matter how hard we try, we have to swallow some of the stuff coming our way in order to keep moving forward. As I have been having more recent medical complications due to my Parkinson’s disease and medication side effects, I again was reminded of Lucille Ball. I like her initially was thinking in the last few months that perhaps I was on the other side and I could handle going back to working as a physician despite my PD (easy- peeze-no problem). However, as life demands have increased followed by  one thing, another and another, I have begun to feel like things are speeding up on my own conveyor belt causing a big pile up, making the juggling and keeping up a bit more hectic and demanding. This does not mean I am giving up on practicing neurology again or stop my advocacy.

But, I have begun to think more about those of us who live with chronic illness and have a job, trying to maintain one, or are looking for ways to earn a living with a different career after PD diagnosis.

As many of us have learned, it is not always possible to keep working at previous capacity or even at any capacity when illness strikes particularly in the face of continuous fluctuations especially if sudden or unpredictable, as mine has been lately, or as we approach advanced stages and begin experiencing motor fluctuations such as dyskenesias.

According to a British study of 308 Parkinson’s patients, 82% had ceased to work after 10 years of disease, 57% retired early like me due to disease.

We all know life with a chronic disease like Parkinson’s is a constant juggling act. We have to learn to balance our health along with family, social, and work responsibilities. This can be a feat for many.

When we first get diagnosed after the initial shock wears off and reality sets in, we have to consider our financial resources to be able to continue providing not just for those who depend on us; but more importantly for the increasing financial needs that come with being chronically ill.

So as you contemplate your future financial stability, you must start making concessions for a time when you are no longer able to carry out your present job duties or perform any standard job. Think of the worst scenario and build from there but without going to panic mode or being paralyzed by anxiety and fear.

I am sure you will begin to wonder if you should share your diagnosis with your boss or fellow employees.

First, I have to say candidly and with all due respect-it is no body’s business unless you want it to be. If your job is unaffected – may not need to disclose. But if you are having to take off more, or performance no longer the same as it was prior to symptoms of PD, this maybe an indication of the need to discuss diagnosis sooner rather than later. If you are self-employed of course you have more autonomy. You have more flexibility of decreasing hours; keeping in mind as someone who knows first-hand about running a business when boss is ill productivity and quality inevitably begins to decline unless there is someone else with vested interest to maintain. Also when you are the boss, your responsibility to those you employ supersede your take home, this means that when earnings decrease only person affected is you ( particularly at the beginning unless you curtail number of employees and/ or shut business down).

Second, take care of yourself and your health by eliminating undue stress by asking employer for things to make your life easier. Taking more breaks, coming in late once a week, having the appropriate tools to make job easier, higher chairs, work from home, etc. of course the better the worker and more indispensable you are. Subsequently, the more likely to have leverage and demands (needs) met.

Third, prepare yourself mentally about the possibility of losing your job due to PD. Few ways to be prepared for future is to continuously learn new skills (I have become a writer), update your resume, look for jobs that allow you independence, flexible hours, work from home such as telecommunications. The key is to find a new passion. We all know that when we are actively pursuing what makes us happy we infuse joy to others and work is no longer so stressful. After all you have the keys of your destiny to make the right accommodations to help with your disease.

But just because its fun it does not mean it will necessarily be easy. After all work is work and can exert a toll on our bodies. for instance, even though I very much enjoy traveling and speaking, this requires a lot more dopamine than when I am just relaxing at home.

Fourth, ask yourself truthful questions like does my irritability make it difficult for others to work with me? Could my cognitive slowness cause a serious problem at work?, do my tremors get in the way of performing daily activities at work? If you answer yes to any of these questions, you may need to talk to your employer about finding ways to avoid or diminish these symptoms so you won’t lose your job. Perhaps, it may be wise to think about career rehab or alternate jobs, as I mentioned earlier especially within your place of employment. Does your boss need meticulous work behind the scenes? PD patients have been found to be more capable of performing these types of tasks especially if repetitive.

Fifth, do not underestimate your mood- particularly for us women with PD it was discovered in similar study as above that women are more prone to leave the work force earlier due to depression, anxiety, and overall general poor quality of life. We as women also have to recall that we have more stressors such as being caregivers to elderly parents, children, grandchildren, and many times have less financial resources available to us. remember to enlist help of a team of professionals to help planning for future. these include social workers, estate planning lawyers and financial planners.

Finally, You may require to plan for both long and short-‘term costs of medication, home adaptations, insurance and other health care related needs’. This also includes planning or at least thinking weather or not you might apply for social security disability or early social security which can affect retirement plans.

For more information go to :PDF  link below to find financial and legal advice/support.

 

Sources:

http://www.pdf.org/en/science_news/release/pr_1415296989

http://www.pdf.org/fin_legal_work

http://www.pdf.org/en/fall05_employment

When to disclose illness at work

http://www.ncbi.nlm.nih.gov/pubmed/16941456

 

 

 

parkinson's disease, Parkinson's Health

Parkinson’s & Hearing Loss: Fact or Fiction- By Dr. De Leon

Blindness cuts us off from things, but deafness cuts us off from people.” Helen Keller

 

 

 

Since I came back from Hawaii, I feel like this is me above constantly asking people to speak into the stethoscope,  ear trumpet, or speak into my good ear because my hearing has not been quite the same. I have been told by my family that I am speaking louder and yelling more than my usual customary “Mexican-ess” calls for. When a Mexican tells another Mexican that they are too loud than you know you are definitely in trouble! Plus, everyone in my family including me have found it terribly annoying having to ask for someone to repeat what they said and always seem to be two steps behind on the conversation. Over the last few years I have noticed that I have more trouble hearing and understanding what people are saying in crowed, noisy rooms as well as on the phone particularly with my right ear. But, things in the communication department seem to have gone south fairly quickly for no reasonable explanation.

Initially, since I came back from trip with a severe case of the flu, followed by pneumonia and then severe ear infections, causing the worst case of vertigo I have ever had in my life, I paid not much attention to it and assumed the problem was related to infections. However, once symptoms cleared I still have continued to experience this problem.

So I almost don’t like speaking on phone if a lot of ambience noise involved. Otherwise, I feel as if I were just guessing leading to some pretty funny and embarrassing assumptions and scenarios.

Of course being a doctor, I must research everything and find the root of the problem. The only new medication, I have added to my regimen is Rytary, thus I went in search of  possible side effects of this medication causing hearing deficits. What I found out is that in fact one of the side effects of Rytary is ear fluid build up which along with my history of chronic ear infections surely seemed like a plausible explanation for my acute and sudden worsening hearing. nevertheless, I went to have an audiology exam. Ears were intact with normal pressure and normal conduction but its the nerve that is not processing information properly- almost a delayed reaction. I am on no other medication which could harm the cochlear- aspirin use can do this on chronic basis but I take a baby aspirin about 2 times a week and this would produce bilateral problems. Doubt I have a brain tumor- aka a Schwannoma  of the eight nerve- I had normal MRI a year ago in so far as tumors but one never knows so will repeat just for peace of mind given my family history.

In the meantime, I began poring over articles on the subject and much to much chagrin I discovered several studies staying that Parkinson’s patients do in deed have hearing loss believed to be caused by the disease itself. Just like me some say not so much in loss of sound but rather slow processing and comprehension of spoken word…there seems to be a delayed reaction. now that I am aware of this when I don’t capture what is being said is I stop for a second and like a slow printer or processor that has to type one word at a time the words come to me slowly ..and I say AHH. Of course this only works if its quiet and not in active conversation because to overwhelming to have to intensely focus on what is being said.

In a study at the University of Naples, Italy  back in 2012, the researches discovered that out of 106/118 patients with Parkinson’s had age related hearing loss (presbycusis) in one or both ears. This was statistically significant finding since the a study of equal healthy counterparts did  not yield as high a figure. Another study in Taiwan revealed an increase in hearing loss of 1.5 times greater in those with Parkinson’s disease. Therefore it is speculated that a chemical specific to PD patients can cause noise-induced or age-related hearing loss or degeneration of various systems important in the integration of information from cochlear into Wernicke’s area could be another mayor problem.  Although, the actual cause of impaired hearing loss in PD’s still remains to be seen it appears that at least in my experience with PD in my own life this is a very real and potentially devastating problem leading to what I spoke of before impairment in communication causing greater isolation in those who have Parkinson’s disease that only worsens as we age and also if have a history of essential tremors for it is well known that most if not all patients with ET will develop hearing loss. This is because movement disorder specialists and neuroscientists believe that the  defect for tremors, hearing loss and longevity lie within the same gene.  

I also believe that perhaps Hispanics who  develop PD will be at an even higher risk for hearing loss since many in my observation have histories personally or in their family of essential tremors.

Once again the teacher has become the student in this ever evolving disease that seems to impact all aspects of our lives. Thus, we need to begin thinking about auditory loss as another non-motor symptom of the disease to which unfortunately I don’t have a solution for as of yet other than possible hearing aids. I don’t know if this will respond to increases of dopamine or not I suspect it might improve some since learning and understanding are higher cortical functions dependent on dopamine. So I will increase my medication and follow up with outcome. Hopefully, I won’t end up with my stethoscope or my daughter’s French horn wrapped around my head like princess Leia’s hair do…

In the meantime …. don’t be like these folks..

If hearing loss is one of your symptoms, ask your doctor for a referral to a hearing care professional for testing to determine the extent of your hearing loss and advice on treatment to restore as much of your hearing as possible. don’t forget to rule out medications and other organic causes- don’t just assume is PD.

Sources:

http://www.hearingaids.com/parkinsons-disease-hearing-loss/

https://www.researchgate.net/profile/Gabriella_Santangelo/publication/231862911_Hearing_impairment_in_Parkinson%27s_disease_Expanding_the_nonmotor_phenotype/links/004635398b58fef8c9000000.pdf?origin=publication_detail

chronic illness, parkinson's awareness month, parkinson's disease

Parkinson’s Disease: Impact on Family-by Dr. De Leon

“Friends LOVE through all kinds of weather, and families stick TOGETHER in all kinds of trouble.” ~Proverbs 17:17

A Midst increasing focus on women’s issues in PD, I and others are beginning to realize the burden of living with and having a chronic illness like Parkinson’s can exact on the family nucleus. Sometimes the burden can extend to close friends, co-workers, and others in the circle around the nucleus.

How then, do we decrease the burden?

The first order of business for me as a neurologist and Parkinson’s patient is advocacy. Education is the single most important factor to decrease the load of the family and of society by raising awareness of the issues which require a not just a holistic approach; but a timely one as well.

First, we must understand the symptoms of the disease (sometimes the rest tremors may not be present from the get go; yet if there is family history of PD, or history of tremors in you, or have any number of symptoms including but not limited to constipation, loss of smell, depression, bladder issues, gait difficulty, stiffness seek advice of a physician asap)  in order to get an get early diagnosis followed by early treatment. This latter part cannot be underscored enough in my opinion. EARLY treatment DOES improve quality of life in the present as well as in the future!!!

Second, once diagnosis is establish and medication initiated it is important to evaluate patient in his or her natural surroundings. this means evaluating their role in the family as well as in society. understanding the impact of chronic illness in every individual is crucial to developing the right treatment plan. for instance, the plan is going to be entirely different if we are dealing with a young mom versus an older woman. also different from one that is employed especially if main provider versus someone that is retired. Single vs part of large family with good support system. Therefore, it is our duty as physicians to recognize the wide and variable effects of having PD to help you the patient build tools to best manage your situation and help you and your family cope with the illness.

Third, one way I recommend that you help your neurologists make the most informed decisions on your behalf is to have an open line of communication. after all, communication is a two-way street. Your physicians unless they have an illness themselves as I do or have had to deal with someone chronically ill in their family, they might not know the ins and outs. this does not mean they don’t care but rather lack of experience in the matter. Therefore, I suggest that at least once a year if not twice you make an appointment with your physician to discuss social needs only. This will go a long way in building a rapport with your doctor as well as getting the right treatment plan for a more fruitful life. understanding your social situation along with any co-morbidities like having migraines, high blood pressure, pre-existing depression are the pillars to a comprehensive approach to PD patient care.

The goal is to be present in your life living it fully. Sometimes we think we are coasting along just fine handling our own problems but we may not realize the impact on our family and our friends, etc. I am sure you have seen the commercial for asthma in which the woman says I rarely need inhaler rescue and they show her whizzing and being short of breath most of time. Same for us. I know that for me this true. 

How many times in the past month alone have you been unable to keep your plans expected because you were not feeling “right?” There was a time I became the most unreliable person because I cancelled more functions then I attended. How many times have you missed family functions or activities or cancelled the vacation you have been waiting on for months because you could not travel?

If this strikes a cord with you then it has been happening way to much. you need to sit with your family and alone and write down the reasons then take to your physician to work together on a solution. Is it because your depressed, in pain, fatigued,  embarrassed of being seen in public? Most issues have a solution, don’t wait.  if you live alone and cant afford to go out talk to your doctor about meals on wheels, help in the house, a nurses aid and so on.

it is always best to write down wishes early on which can always be amended than to have no plan and wait for crisis to arise and no one knows what to do and you are to sick to make any life decisions.

Remember, the better you and your close family understands the disease the better handle you will have on the situation.

As a colleague once said: “without education you can not achieve proper control,” referring to treatment of chronic migraneurs. However, the principle still applies for those of us with Parkinson’s disease. Case in point, I believe one of the biggest problems in Parkinson’s disease is medication overuse. This is one of the main reason, I think patients have increased dyskenisias  as well as increased side effects. this remains a huge barrier to break because I was trained at the cusp of new medications (dopa agonists and others that have followed subsequently) coming on board which means that physicians were accustomed to letting their patients take the medication when they ‘thought’ they needed it. even I at the beginning of my practice would tell patients it was ok to take extra.. However, I began realizing that when I asked how much med they took, how often, and for what symptoms? 1) they were overdosing and 2) often times they were taking medication unknowingly for side effects of medication NOT the disease which only worsened when took more like dyskenisias!

Therefore, my recommendation is keep a diary when you take extra medicine, the amount, the name, the reason, and what happens when you take it ..this will be a much better method of helping your physician track your symptoms and make appropriate adjustments. My philosophy is small amounts of various types (agonists, MAO inhibitors, COMT inhibitors, cholinergics, along with dopa) evenly spaced works so much better for control of side effects, mood control and decrease incidence of motor fluctuations which in turn will lead to a less burdensome life on others.

EVERY DAY IS A FIGHT. I am a Parkinson’s WARRIOR!

parkinson's disease, Parkinson's Health, parkinsons health and beauty tips

Going to the Dentist Can Be a Challenge When You Have PD: by Dr. De Leon

Life is short so smile while you still have teeth.”

I wrote a while ago about the importance of maintaining dental hygiene particularly in light of a chronic illness like Parkinson’s disease. The slew of medications can potentially lead to tooth decay due to drying of mouth and wearing of enamel. However, keeping and scheduling dental appointments can potentially be challenging particularly as our disease advances. I know this too well both as a neurologist and as a patient with PD. Going to the dentist use to be common place but now ten years into my disease I have to think about it twice and may have to reschedule a time or two.

Yesterday, I went to the dentist although I seriously considered rescheduling once more due to severe nausea. Some of you may know what I am talking about, but for whatever reason now dental cleaning is extremely uncomfortable. One it always leaves my mouth and teeth incredibly sore for a day or two not to mention that keeping my mouth open for whatever extended amount of time needed for hygienist or dentist to work on triggers my dystonia not just in my jaw but in my neck which adds to the pain and discomfort which then triggers a migraine. It is an inevitable chain reaction unless I prep myself. So before I Go to the dentist, I have to take my nausea medicine, my migraine medicine and a muscle relaxant to keep the dystonia from setting in.  Needless to say I can only stand having my mouth open for so long so as you can imagine if you had the same problem doing procedures of any kind which could last more than 45 can be quite challenging. In a previous blog titled “tips on how to maintain dental care,” I provide some insight on how to get ready for a dental appointment. As I mentioned before it is important to schedule the visit at the maximum. Peak of your medication effect so if you are better in afternoon schedule at that time. For me now as I am beginning to have more difficulties with swallowing as my disease progresses I especially have to make sure medication is full force because there is nothing worst like having a choking sensation and having to tell yourself ” swallow” every time you have to especially when your head is tilted back, mouth wide open and water squirting at you!

If you experience some of these problems talk to your neurologist ahead of time especially if having major dental work done. He she can prescribe oral dissolvable medications as well as sedatives and muscle relaxants to aid in the process as well as coordinate care with your dentist.

I now in need of a couple of fillings repaired. Besides taking my muscle relaxants and anti-inflammatories, I may need a dose of Xanax which requires someone accompanying me to the appointment to drive me home. Another alternative is scheduling sedation which will definitely require making prior arrangements with a friend or loved one to accompany you.  The same is true if you are suffering from blood pressure problems particularly if it drops. So now for at least last 3-4 years my dentist always checks my blood pressure before commencing any treatment. He also lets me wear my sunglasses during the procedure to avoid extra sensory articulation from light shining directly on my face and compounding any possible migraine trigger. Can also ask for quick short breaks if work is extensive.

Even though I don’t much enjoy going to the dentist anymore and is no longer “routine,” it is equally important to continue care for my teeth as for my body; so with careful planning and necessary preventive treatments I can still go on my own without much difficulty other than a sensitive mouth for a day or so. At least both of my dentists are well versed on the manners of PD so I know I am in good hands.

 

 

caregivers and chronic illness, chronic illness, parkinson's awareness month, parkinson's disease, Parkinson's Health

When Roles Change-By Dr. De Leon

As we continue to raise awareness for the nearly 10 million people suffering from Parkinson’s disease worldwide, we must not forget the unsung heroes who stand by our side day in and day out.

There is no doubt that caring for a Parkinson’s person takes an entire village…

The care partner who maybe a friend, spouse, or loved one is an integral and vital part of the team. However, as the days and years follow the diagnosis of a loved one with this progressive neurodegenerative disease, the caregiver him or her is faced with challenges of their own.

Often times these people have the task of adjusting to a new role of supporter which requires a lot of flexibility and is no easy feat. This shift in role or expectations can leave everyone especially new care taker to feel unsure of the future, expectations of others including patient leading at times to feelings of isolation and frustration.

So here are a few tips I have learned over the years in being a caregiver and watching many families struggle in the care of their loved ones with neurological chronic illnesses.

Important to recall that the shift in responsibilities can take many forms. For instance, I have known many couples in whom the primary bread winner was the one that got diagnosed with PD subsequently leading to disability and loss of employment which can put a significant amount of strain in an already tense situation. This may require the spouse to get an outside job or new career to be able to provide for family but now they are doubly tasked by not only having to provide financially but also emotionally.

It is important to engage the whole family to avoid burn out-children if they are adults can help to care for the sick parent while the other one works. They may help around the house with chores or providing meals. Close friends and siblings can also be engaged to help out in the care of a loved one.

The most important thing to remember as you navigate the uncertain waters of your new role as caregiver is to maintain your sense of self – and not get lost in the shuffle or chaos that may at times accompany living with someone that is chronically ill.

 

  1. Don’t expect perfection or to know everything. Allow room for errors- taking care of someone else it’s a learning curve just like being a new mom. Make sure to pace yourself. Be open to the experience even if you are not naturally inclined to being a caregiver. Remember, “All roads lead to Rome,” meaning there are many ways to accomplish the same goal. Find what works for you and embrace it.
  2. Find value in your new role. Don’t look upon the experience as an obligation. This is a sure way to fail. It’s all about the attitude. We may not be able t change our situation but we can certainly do a lot about how we tackle the challenge. Remember, to use your own brand of pizzazz to make caregiving your own forte. You have lots of talents and skills put them to good use. For instance, when I took care my grandma I could manage her medications best being a doctor and coordinate for her special needs to be filled by working with other ancillary health staff.
  3. Don’t go at it alone. No one is an island. Make sure to ask for help from your health staff, social workers, religious leader, friends. Try to connect with others undergoing similar situations to avoid isolation- attend support groups. There are many organizations that can help. Parkinson’s team, pdf.org, caregiveraction.org to name a few.
  4. Don’t forget to smile and be yourself. Smiling decreases stress levels and attracts others to you. Draw on your past experience as a source of strength along with prayer and faith.  Look this as a new opportunity for you to grow and develop as an individual. Don’t stop dreaming and making plans for the future. Even if the situation you are in now is not what you would have chosen, taking the new role wholeheartedly with reckless abandonment can prove to be a rewarding experience with lessons that will last a life time that can be passed on to younger generations. See this as an opportunity to get closer to the one you love.
  5. Most importantly, keep in mind that this too shall pass!!! Enjoy your loved one while you have the chance often times they leave us too soon.
Parkinson's awereness, parkinson's disease, Parkinson's Health, Parkinsons disease

Dare to live with a plan: Dr. De Leon

Dear Future,

I am READY…..

“The future belongs to those who believe in the beauty of their dreams”Different-Tulips…so keep dreaming. You will get there eventually.

Many of us when we are first given a diagnosis of  Parkinson’s disease may feel that the end of the world is near or as if our lives are doomed. We may have a hard time thinking about the future …this may become harder as our disease progresses. It can be freighting to think about the future. More rationally, some of us may be concerned about our finances since we may have to leave our jobs sooner than expected. But, these anxieties are extremely common for anyone living with a chronic illness.

today as we start Parkinson’s awareness month – I want to discuss the value of living day to day in the moment, taking life as it comes one day at a time. However, it is equally important that you believe in yourself and visualize the future with you in it.

Here are some tips to maintain that positivist attitude while preparing for the future.

Remember, a mediocre plan beats a brilliant one that is never implemented anytime.

  1. Unless you have been told specifically that you are terminal, there is no room in your life for those fears to contaminate your thinking and interrupt today’s precious moments.
  2. Get financial & estate planning, make a will and power of attorney with all your wishes and put away in a safe keeping..now you can breath and continue enjoying your time those who matter most.
  3. Break the future into smaller blocks of time; make short term and long term goals. Things you would love to achieve..remember you can do anything you set your mind to..learn a new language, visit a new country, learn a new craft, the possibilities are infinite. Think on paper-writing your goals down gives them a sense of permanency, this act will energize you ….just try it.
  4. Continue your routines as usual like shopping, getting your nails done, getting your hair done, or going to see a play. Do something everyday to keep moving forward.
  5. Never say no to friends invitations to outings …if in the end you don’t feel like going or are too sick to go your real friends will understand.
  6. Plan for extra time when doing any activities just in case meds don’t kick in as they are supposed to or you have more side effects than usual or running slower and stiffer.
  7. Go ahead and plan for that dream vacation…look at my tips for traveling blog.
  8. Capture those special moments via video, pictures, and start scrap book to remind you how much you have done and how you have overcome. Surround yourself with those memories on your desk, and around the house.
  9. Lastly, never let your calendar be empty …if necessary plan in pencil but don’t stop planning!
chronic illness, parkinson's awareness month, parkinson's disease, Parkinson's Health, Parkinson's symptoms, parkinsons dementia, parkinsons health and beauty tips

Go Red: A must for women with PD: By Dr. De Leon

“Follow your heart but take your brain along.”

 

February is not only the month of love but is also more importantly the month in which we bring awareness to the 2 most important organs we have -our BRAIN & our HEART. Brain & heart health are extremely important for all but particularly for women with PD because the symptoms of a heart attack and a stroke are not similar to those of men in many cases. Thus, women may go un-diagnosed and are more likely to suffer long standing consequences. In fact in a study looking at women and stoke they found that most physicians still regard cardio/cerebrovascular disease as a man’s disease. Thus, women are not often offered the appropriate counseling. Only 22% of Primary care physicians and 42% of cardiologists felt equipped to deal with cardiovascular issues in women. These figures puts us at a significant disadvantage from a diagnosis and treatment standpoint.

A few years ago, I had an episode of severe sudden chest pain with exertion along with nausea, dizziness, and sweating. Of course being a physician I could not exclude a cardiac cause for my symptoms. However, when I went to the cardiologist his response was less than I would have expected given my condition because in his words ‘women simply don’t get heart attacks‘ especially at your age. Of course, no one wants a heart attack (and by the way I do have family history of young onset heart disease)  at any age but excluding an entire differential based on gender seemed a bit worrisome. My symptoms turned out to be caused by a combination of acute endocarditis along with malignant hypertension. Fortunately my blood pressure is now under control (at least for now) and my endocarditis has resolved.

 

However, you may be wondering why I am writing about strokes and heart attacks in a Parkinson’s blog?  Well, for several reasons. First, because those of us who suffer from Parkinson’s disease and other atypical Parkinson like Shy-dragger disease have autonomic dysfunction; with this problem comes severe alterations in blood pressure ranging from extremely low to extremely high as is my case. In my experience as a neurologist taking care of stroke patients i have found that it is the constant fluctuation from very high to very low that is most damaging along with the rate at which it changes (rapid change is more deleterious to vital organs like the brain and heart). Furthermore, high blood pressure is the single most important risk factor and leading cause for stroke. We often talk about low blood pressure in PD patients but rarely do we talk about high blood pressure. But even if our blood pressure did not rise the sudden drop can be equally detrimental to an organ that is critically dependent on blood flow and oxygen levels to function properly.

Second, patients with PD and other atypical Parkinson like MSA have tendency to have as part of disease sleep apnea. It is believed that half of those who have sleep apnea also have high blood pressure. Plus, the severity of the hypertension is directly related to the severity of sleep apnea. But, you don’t have to have severe sleep apnea to have problems. Even mild sleep apnea can alter your blood pressure putting you at risk for a stroke. This is crucial especially given the fact that most strokes occur in the early hours of the morning when we are at sleep.

 

Third, migraines with aura appear to be a risk factor of PD and who has more migraines other women? In fact recently, in a medical journal it was speculated that having an aura increases the risk of having atrial fibrillation yet another risk factor for developing stroke.

Finally, just because we have one medical problem i.e. Parkinson’s does not mean we are immune to developing other neurological disease or medical problems that come with age such as high blood pressure.
The good news is that high blood pressure is a modifiable risk factor. We might not be able to do anything about our gender, our age, or our Parkinson’s diagnosis but we can be proactive in making sure, we eat right, we exercise, and we talk to our physicians about any weight issues we might have which directly impact our risk for both apnea and high blood pressure. Also, it is important to monitor your blood pressure and discuss treatments if needed as well as stroke prevention treatments. The other good news is that although stoke studies have not shown aspirin to prevent strokes in a sub-study of women it proved to be extremely effective. ( I take my aspirin daily!) Lastly, I firmly believe that because we have a higher likelihood of developing apnea we should be frequently screened. Thus, speak to your physician about these issues especially if you have family history of cerebrovascular disease or if you are a young woman with PD and have migraines with auras, or are on birth control pills.

References:

Zedde m. Women and stroke: A matter of education?. Neurology. http://n.neurology.org/content/women-and-stroke-matter-education. Published 2019. Accessed February 3, 2019.

Chang BP e. Neurology Concepts: Young Women and Ischemic Stroke-Evaluation and Management in the Emergency Department. – PubMed – NCBI. Ncbi.nlm.nih.gov. https://www.ncbi.nlm.nih.gov/pubmed/28646558. Published 2019. Accessed February 3, 2019.

High Blood Pressure Symptoms | Sleep Apnea Guide. Sleep Apnea Guide. https://www.sleep-apnea-guide.com/high-blood-pressure-symptoms.html. Published 2019. Accessed February 3, 2019.

Aspirin May Lower Stroke Risk in Women with History of Preeclampsia – ScienceBlog.com. ScienceBlog.com. https://scienceblog.com/505555/aspirin-may-lower-stroke-risk-in-women-with-history-of-preeclampsia/. Published 2019. Accessed February 3, 2019.

Nogrady B. Increased risk of atrial fibrillation with migraine aura. Mdedge.com. https://www.mdedge.com/neurology/article/184528/headache-migraine/increased-risk-atrial-fibrillation-migraine-aura. Published 2019. Accessed February 3, 2019.

@copyright 2019

all rights reserved by Maria L. De Leon MD

cancer risk in parkinsons, chronic illness, fluctuations in parkinsons, parkinson's disease, Parkinson's Health, Parkinson's symptoms, Parkinson's tratamientos, Parkinson's treatment

Signs that your body is in trouble – especially in midst of living with PD: By Dr. De Leon

There are many subtle ways that our bodies tell us that something is not right. The body is a perfect organism always in balance. Have you suddenly had a craving for something sweet, sour or salty? I have – and is not just pregnant women that have cravings. Funny thing when I was pregnant I had only cravings for fruits. Then when I began to have cramps and pain, oh boy was I craving sour and salty things. All my pickles were dry in the refrigerator and even margaritas sounded delicious because of the ice, salt and lemon. Once my cramps got treated I had no more need for dill pickles at the movie theater.
One must learn to listen to our bodies and take note of the subtleties because they can be screaming at the top of their lungs for us to take heed and correct what is gone amiss.

When one lives with Parkinson’s disease, not only are we not immune to other illness, as I mentioned before according to a study only about 22% of patients with Parkinson’s have that as their only illness, Plus, Parkinson’s is a systemic disease which affects almost every major organ system. Thus, we need to be Elle to recognize silent or subtle symptoms to avoid further heartache.

We know that the gi system is one of the most commonly involved in Parkinson’s disease. Common symptoms can vary from constipation, paralysis or parestesis of the gut including reflux caused by both medications and disease itself. One of the common signs of having reflux is frequent coughing, unexplained wheezing and sometimes chocking a few minutes after finishing a meal or eating snacks. Sometimes only symptom of gi symptoms and severe reflux is not heartburn or pain but foul mouth smell/taste (halitosis) or wearing out of enamel of back of mouth. Untreated reflux can not only lead to tooth decay, motor fluctuations of Parkinson’s as well as esophageal cancer. Remember of the causes is H. Pylori

As I said previously one of the most common causes of pain and cramping in people with Parkinson’s is due to electrolyte imbalance brought on by repeated laxative use to relieve chronic constipation. Signs that you have electrolyte imbalances  is what I mentioned earlier cravings for sour and salty things – a good fix is a spoonful of mustard and going to see doctor about electrolyte imbalance, potassium, magnesium and calcium.

Some of us who have LRRk2 gene as a cause of our Parkinson’s, are also at risk of developing another autoimmune or inflammatory diseases. One of the common autoimmune diseases who are a frequent comorbidity with PD is inflammatory bowel disease (both ulcerative colitis and Chron’s disease). One of the subtle ways a recurrence of Chron’s disease is the presence of pseudo -hemorrhoids. Of course you may think we’ll I have chronic constipation so it’s not surprising. You should always should check with your doctor and visit a gi specialists. Chron’s can affect the anal area in the form of fleshy growths which may mimic hemorrhoids. This type of Chron’s is extremely painful and Has a worse prognosis especially if left untreated causing bowel obstruction, anal fissures, and even cancer of the colon. So make sure that one of your team players in the fight against PD includes a gi doctor whom I recommend seeing at least twice a year or more frequently if having other problems. And especially if already have a history of inflammatory bowel disease.

Another frequent not so subtle problem that indicates something might be wrong is change in bladder habit. In men with Parkinson’s especially those who take or have taken Stalevo for while are at a higher risk of developing prostate cancer. So if your stream changes or are making more frequent trips to the ‘john’ don’t assume is just age or PD; get in checked out. Another common cause of increase frequency and urgency is Diabetes which  usually results in increase trips as well as increase amounts of urine (frothy) due to body’s attempt to rid of excess sugar. A big sign is increased thirst which sometimes can be confused by the fact that so many PD meds also cause dry mouth but we must look out for changes especially when no new meds are added into the mix. another sign could be increase frequency at night, although it could be that you need a booster dose at bedtime or even a sign that we are simply getting older- if you experience this as a new or worsening symptom consider talking to your doctor ASAP. The best way to check is to get a HgA1C which measures your  blood sugar levels over a period of 3 months. this is extremely important because there is some evidence as I posted before that excess dopamine can lead to insulin resistant condition and hence diabetes. Finally, I  can’t discard the increase risk of urinary infection triggered by both bladder malfunction and medication effect. Two good meds which help with symptoms of urgency and frequency are phenazopyridine and UTA. The former turns urine dark yellow and the latter turns it slightly bluish hue.

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