parkinson's disease, parkinsons health and beauty tips

Trouble Performing Tasks Since PD Came Into Your Life? By Dr. De Leon

Trouble Performing Tasks Since PD Came Into Your Life? By Dr. De Leon

I sure have….
Most Frustrating thing for me was to discover that after being the QUEEN of MULTITASKING, I now was having trouble even carrying two things at once.
When, before NOT once did I need a calendar because I could keep everything in my head now even when I wrote things down I had trouble keeping track of things…..
Even spent hours pondering why some people could continue to keep working even years after Parkinson’s while others can’t do so for very long after diagnosis?
I have often thought about this…
and wondered if I was alone ?

Given the fact that I had to give up my one true passion in life …medicine… not long after Parkinson’s diagnosis while others like astronaut Rich Clifford were able to continue to remain viable in their careers for years…
I remember while I trained with Dr. Jankovic hearing about the astronaut (who was his patient) still working despite Parkinson’s disease and wondering how that was possible with such stress and difficult job requiring much meticulousness and concentration. Frankly, his feats were always admirable.

Especially, in light of the fact that stress CAN and DOES exacerbate Parkinson symptoms. We know that stress increases adrenaline and adrenaline also known as epinephrine is the end result in the pathway where dopamine is a precursor…so if you are producing a lot of epinepine it means you are using up more dopamine on the starting end. Therefore, your Parkinson symptoms can come on faster and may lead to fatigue quicker.

Of course, everyone is unique as is their Parkinson’s and aside from the obvious physical impediments of dyskenesias…tremors will also increase with increase adrenaline rush. But, tremors do not necessarily have to interfere with ones activities since Parkinson’s tremors by definition are at rest. These are not present during action…in fact they go away with purposeful movements.
A few years back, I read that patients with Parkinson’s did best with activities that required repetition, or very methodical tasks. I thought about this a while. At first, it seemed to me to be contra intuitive because I thought this would fatigue the individual and the muscles but this is only the case for those of us who have dystonia (The problem is in the muscle not being able to relax). It turn out that in fact, doing repetitive movements or actions is very advantageous in any individuals especially in Parkinson’s patients because you essentially are putting your brain in auto pilot taking the thinking part out and essentially bypassing the “bad” circuitry (finding new way to do same activity with same desired outcome). An example, perhaps some of you are artists, musicians or even athletes by profession and I am sure that all of your instructors, coaches and teachers have taught you one thing or you might have discovered on your own that mental rehearsal of a shot, or playing piano or even painting can be as valuable or even more valuable than actually performing the function because in your mind you will ALWAYS DO IT FLAWLESSLY EACH AND EVERYTIME. So, that when you go to perform you can perform action automatically without thinking! You are bypassing that relay station….This is akin to tricking the brain to being able to walk NORMAL with marching music, or by holding someone’s hand, or visualizing stripes or even able to paint or sculpt flawlessly when you cant even tie your own shoes-fooling the brain and a finding new route!

So, if you do something for 120 hours a week…something over and over, you can do second nature without thinking…Parkinson’s disease and symptoms should not come into play much. The key is PERSISTANCE! Don’t get frustrated because you can’t tie your shoes for instance find a new way to do it and do it a thousand times if necessary until it becomes second nature. We can’t dress ourselves the way we use to…make modifications..
Same thing goes for our jobs, careers and life opportunities in general. If your job or life demands that you are always having to change focus, your brain can not officially adapt …it has new challenges…
so, what can we do?
Increase our meds to be able to cope with the needed increases of Dopa required for one; two, try to find an alternative way to perform your job where you don’t have constant variation…seek for repetitive, methodical positions- your brain will thank you!

The constant need for higher and higher doses of dopamine is reason, I finally realized why I found it difficult to function as a physician. In fact, most people I know that are (were) in the medical field are (were) not able to do so very long after their diagnoses….
I asked what could be the reason?….

While, I was in practiced I often explained to patients that just like their bodies were slow to respond to the brains commands (bradykenesia) so was the mind at times with PD finding it difficult to shift from one task to another because the connections were “slow.”
But, I never realized how utterly TRUE this REALLY was and how CRUCIAL this ability was to be able to be an effective and productive physician or any person working under life and death situations!
My neurological skills did not diminished ….what changed was my capacity to work under pressure and make quick decision one after another, and another on and on…nonstop!
My capacity to focus and pay attention to detail did not changed…in fact I think they enhanced but shifting gears quickly to different tasks at current levels of medication caused me a great deal of frustration.

My brain could not adapt to the constant bombardment of the unexpected. Sure doing an exam is rote …is what comes next…everyone is different…plus the constant interruptions from someone falling in waiting room or a call from the ER can cause the dopamine to be used even faster. Perhaps there is something to the theory that there appears to be a higher risk of PD among health professionals and one theory for this has been cited as the rapid aging of the basal ganglia induced by stress (i.e. the dopaminergic system). This compounded with some genetic predisposition may be triggering symptoms sooner than they would have if stress level was less severe?

Which leads me to the question. What can we do with this information..? Perhaps, we should first recognize the fact that multitasking is a lot more challenging with PD albeit not impossible as I stated above. We need to recognize that we can retrain our brains to do any and all activities. We just might have to put in some extra time doing so along with some creativity which fortunately most Parkinson’s patients seem to already be endowed with this either as part of the disease or as a consequence of medication. This process then needs to be carried over into education of doctors (health staff), employers, family and caregivers regarding this…

A person with a job requiring lots of multitasking may need to need up their meds or consider changing to accommodate their own individual unique skills to continue to be productive in society without exacerbating their illness as much.. also if they choose or have to continue to work in a stressful environment, I suggest asking for or allowing themselves some down time for dopamine levels to reboot… at least 5 minutes every hour to 2 hours- again your body and brain will thank you!
I, too had to make a choice… I could function just as consultant or lecturer with someone else doing all the dictating and note taking and call backs and no unexpected calls at 3 am with some one crashing in the ICU because for me to be able to function at the level I used it requires 3x the amount of medication I currently take…(to be able to keep up with dopamine demands being rapidly converted to adrenaline) the choice is do I stress my body, increase my side effects, increase my risk of dyskenesias to be able to continue to work as before or do I modify my life style? Find things that use my knowledge and expertise without exacerbating my symptoms or needing increase in meds and still be able to multi task because I am not over whelming my nervous system!
Finding a balance is also Key!

The choice is clearly an individual one….

But, you can still be an active member of society contributing with your talents as long as you and your caretakers have a clear sense of your capabilities and limitations. Explore your de novo artistic talents become an artist, writer, painter, the world has endless possibilities. A perfect example of a person with severe limitations which has not allowed his illness to defy him whom I greatly admire both as a person and as a scientist from an equal perspective of a neurologist and person with disability is Stephen Hawkins ….he has single handedly changed the face of science and physics forever despite being trapped in a body that no longer responds to a gifted and genius mind. We all can make a difference and have a destiny to fulfill… remember, “don’t just shoot for the sky because people have already landed on the moon!”
“Aim for the moon and even if you miss you will land among the stars!”

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com
may also contact me at
deleonenterprises3@yahoo.com

alzheimers, parkinsons dementia, parkinsons health and beauty tips

Health & Beauty Tip # 14: Art of Caregiving -II By Dr. De Leon

Health & Beauty Tip # 14: Art of Caregiving -II  By Dr. De Leon

” Throw in a dash of panic, a pinch of fear, add a tablespoon of manipulation, 3 cups of scheming, and a handful of pills”- Charles Swindoll

and what do you have? Nothing but Chaos —

Now, a few years later since my grandma passed away, ironically, I have now become the patient. I have been diagnosed with young onset Parkinson’s disease forcing me to retire at an early age and give up the career I so loved! However, my role as a caregiver continues …in fact it appears to be expanding at an exponential rate.
Only difference is that NOW I am a patient as well and frankly I am not sure if my marriage will survive this second round of challenges!! I still have the support of my spouse but I find myself increasingly feeling like I am less of an equal and more of someone who needs tending to despite my very best efforts to the contrary! Which is funny given the fact that I still run everything around the house and in our family; you would know this immediately if you were part of my family because within a day or 2 of me being down the entire house falls apart!
Other than my job status and the whole bunch of pills I must take daily to function I do not see a difference in my abilities, personality or talents (perhaps- I am in complete denial- ignorance IS TRULY BLISS)….okay, yes! I am a little slower at times and more fatigued most of the time but I am still the one everyone else turns  to for help!

The past couple of week’s life stressors and demands have landed me at the footstep of the cardiologist office with severe chest pain fearing an ischemic attack- heart attack! These events which were the culmination of being housewife, mother, daughter, sister, caregiver, friend, mentor and patient among a myriad of multiple other roles CAN BE UTTERLY EXHAUSTING even in writing!
Ordinarily, if I have too much on my plate I can lean on my husband for support. Thank goodness for this because it was HIS insistence that I see a cardiologist! Turns out I have a cardiac condition- YIKES….DID NOT see this one coming…. But, over the last couple of weeks my husband had severe flu running 102 fever and developed pneumonia, and my daughter was discovered to have a possible tumor. This was after the beginning of my cardiac pain ….as you could imagine I did not have much reserve or stamina to care for anyone other than myself and seeing everyone so ill and needing my attention and care only made me feel sicker!
They wanted home cook meals but I had no groceries because I was too sick to go to the store-so thank God for take out!

Now, imagine you are in my shoes …what will you do?
Everyone you love is ill and is counting on YOU to bail them out but YOU are not only torn in multiple directions but are ILL yourself?

Well, as all things tend to entropy- (Greek word -meaning measure of the disorder)…..implode they will!
We must learn to cope with the stressors -so it is NOT US that BREAK DOWN & end up such as myself in the doctor’s office or worse in the Hospital! After all, if we are not well…then who will take care of our loved ones?!
My near cardiac event was not only a wake- up call to focus on what is truly important. But, also served as a reminder that any stress can be detrimental even lethal in the presence of any underlying chronic illness such as Parkinson’s disease, much more so than if it occurred in an otherwise healthy person. This realization led me to focus my attention on the challenges that we the “sandwich” generation are facing daily. The term sandwich generation refers to a generation that is simultaneously caring for parents and children coined by Dorothy miller in 1981.
Many of us who have Young Onset Parkinson’s Disease, Parkinson’s and Parkinson’s Plus Syndrome are in this situation caring for an aging frail parent who perhaps has Alzheimer’s and rearing young children. We are having to attend school events, piano recitals, swim meets, girl scout activities and so on while make end of life decisions for our loved ones who may not even remember who we are! This can take a toll on any normal healthy person. throw in the wash your illness, your own doctor appointments NEVERMIND YOUR LOVED ONES DOCTOR APPOINTENTS and perhaps you are still holding a job either full time or part time? But, even if you don’t work outside the home these activities are enough to drain the last ounce of energy of any one.  Yet, outside of caring for our loved ones on both sides of the spectrum, there is still house work and cooking to do!
It should, then, come to us as no surprise why we are so fatigued, depressed and worn out! Because face it, no offense to the guys who also are going through this illness and same issues….women are still in the majority of cases the home makers and the ones to tend to the kids and look after the parents. This is not because men don’t want to help. Sometimes they just don’t KNOW how to because they have never been thought or given the opportunity to do so!

It is hard to come home from a hard day’s work and have
to essentially continue working because you have to be the one to pick up the
slack for your loved one due to their illness. Sometimes all, you want to do is come home
and rest undisturbed!
This means NO cooking, cleaning, or tending to someone else’s needs the minute you walk
in the door.
It can be especially disheartening if the person you care for is able to change and groom themselves and yet they are
still disheveled upon your arrival or worst in their morning clothes! That’s why even if I had a
horrible day, I will take care of myself and spend time grooming and if at all possible rest(as I mentioned in other blogs- a “5 minutes rest-sit still and do nothing” to recharge at least a couple a times a day is highly recommended! This goes a long way to avert fatigue and only way I know how to keep going). Do whatever needs to be done so by
time husband or spouse or care giver arrives, you are looking your BEST but also NOT appear as a patient! (although sometimes this can’t be helped).

Even though, in my case my husband serve as my caregiver, he is also the provider and bread winner so I try to maintain my role as an equal in the household …not only looking the part of a well groomed wife but also that of a homemaker. The latter is not always easy since we all know that having Parkinson’s or any other chronic illness results in “good days and bad days.” So, for the not so good days either put something in a crock pot (“Any body can cook in a crockpot….” by Debbie Thornton) or  stock up on fast easy semi-nutritious frozen foods or for better quality foods do like I do on days when you feel well cook a surplus and freeze for later use. [In some cities and towns, they offer cooking classes where you can actually cook a whole weeks worth of food and take home to freeze! I would definitely take advantage of this if I were to live in one of these towns ]
I use all the suggestions above 90% so there is a meal when he comes home. For I have learned that nothing makes a man happier than
seeing food on the stove…I do declare…. when my husband sees all 4 burners going
he gets positively gitty!

Fortunately, there is take out the rest of the TIME!! don’t stress yourself! spending time with your loved ones is what’s MOST important!!!!

After all what matter is your heart and enthusiasm in caring for your loved ones-(Greek origin is entheos, “God in”). As my best friend always said, “is the quality Not the quantity” of time you spend with those you care for……

So, next time we feel frazzled and sandwiched  in our duties and responsibilities instead of hiding or running to the doctor for more pills let us turn our entropy into entheos in order to see God in every situation to make it fresh and exciting even if we are just the meat in the sandwich  being crushed and squeezed from both sides…. remember, no perfume could ever be released from its source (the flower)  without crushing it first!

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Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at  www.pdf.org  or at www.wemove.org

Always Keep it EVEN

Empathize- remember in a few years all of us could be in the same situation !!!!!

Validate concerns-when ignored or suppressed emotions gain momentum if validated they dissipate

Encourage wellness-music, art, exercise

Neutralize anger/panic/fear-  person is STILL living HIS/HER LIFE- you are only there to facilitate