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

Quality of life considerations for Parkinson’s patients by Dr. De Leon

Life is all about quality Not quantity!

My husband’s first words to me upon arriving home this evening ‘was were you able to go see doctor?’ Before I had a chance to utter a word, he responded: ‘you canceled again did you not?’

I nodded, yes. ‘I was afraid of that. I was thinking all day about what the doctor had to say about your condition hoping you had been able to keep the appointment this time around’.

I am sure that this is a common scenario that gets played over and over again and again across the country and the world when living with a chronic illness; particularly if there is no one to help get you to the doctor’s office as it is my case. It is extremely frustrating to need to be evaluated by a healthcare provider yet being unable to get dressed or even show up because of physical impairments.  I worry that I will not be given appointments again if I cancel more than I keep; after all other patients who CAN show up would most likely be given preference. As a doctor I know that that’s what I would do. Another concern, at least here in this country is being charged a fee in many specialists office if there is a cancellation less than 24 hours which I understand as a professional but as a patient with daily fluctuations this is hard to deal with adding yet another stressor.

I am beginning to value the idea of walking’s at the doctor’s office even more now; something I always made room for in my practice. Unfortunately, aside from primary care clinics this practice is extremely uncommon in specialty practices. In other countries the wait to see a specialist may take months making it more difficult to get care if you miss an appointment. Hence the urgent need for telemedicine to begin branching out to meet the needs of a growing population of chronically ill neurological patients who are also getting older. As I get older and sicker, I really think I should be moving closer to the city where I can have easy access to my doctors; plus in some cities here in the States they are beginning to introduce the service of UBERHEALTH for those patients who cannot otherwise get to their doctor.

Of course, this brought me to a realization that we need to improve our assessment of PD patients beyond the UPDRS (unified parkinson’s disease rating scale) and Hoehn & Yahr scales. Sure the motor symptoms are a big component of our disease and are ever present. However, the non -motor issues and the emotional burden placed on by our disease is something we as physicians do not really take much into account.  For instance of medication, I might actually be considered normal on my UPDRS or stage 1 with H&Y scale making someone think there is no disability or need to change treatment. Yet, if you ask my friends and family what the impact of my disease is on my life I guarantee it won’t be trivial.

We don’t talk enough about how often we are missing things in our daily life!

We as physicians need to start asking open ended questions like in the past month have you not only missed work due to illness but did you miss out in other good things like spending time with friends, husband family? Were you able to do not only the things you are responsible for but what about the things that bring you joy like going shopping or to the movies, etc.?

I think perhaps is time we begin using Quality of life scales to personalize treatment and adjust treatment plan.  I think getting people on right regimen makes a huge impact on quality of life to make living with Parkinson’s much more manageable

For instance, someone may say they only experience 1-2 hours off (counting only severe offs yet not able to do normal things like keeping appointments); this person would require different treatments than someone else who can do everything they want when they want except for those two hours. We need to realize that although motor symptoms can be extremely tough and an obvious problem to contend with, it is the emotional burden which runs deeper than imagined for most of us and can impact the quality of life to a greater extent than the motor symptoms. Many people with chronic illnesses like Parkinson’s disease become withdrawn, isolated and avoid social settings for fear of what might happen in if suddenly they go off, become dizzy, nauseated, off balanced, fall, faint, lose control of bladder etc.

So besides talking to our physicians about the REAL needs, fears and limitations. How often did we self medicate? How often did we canceled or missed out on social activities? Besides getting our medications adjusted to help with the causes of why we are missing out on things (i.e. side effects of medications, dyskenesias, non-motor symptoms, generalized fatigue, etc.) we should also ask for counseling or behavioral therapy to help us and our families deal with and cope with our complex life style which often takes back seat to having and dealing with PD in its multifaceted presentation.

Keep a diary of the things you missed or had to cancel because of PD to show your doctor so he/she can discuss treatment options to get you feeling better and enjoying life anew!!

@copyright 2018

all rights reserved By Maria De Leon MD

chronic illness, parkinson's disease

3 Tips to Making the Most of the New Year: By Maria De Leon

As we stand on the brink of a new year, is only human to want to find comfort in the past. However, we must remember that life is a constant cycle of seasons. If we want to be happy, we must learn to embrace the changes having PD brings into our lives such as a new found creativity. One must first learn to let go of things that hold us back like anger, trepidation, and fear in order to move forward. The New Year is our opportunity to shine and try new things like new therapies, treatments, and even renew our strength by making peace with our illness.

We now have 365 new pages to rewrite our history with PD. Will we throw in the towel or will we unveil victory? It is all up to us.

 Tips to a great 2018.

Be good to yourself. No matter how you feel inside be present in the moment. Always acknowledge your feelings. Don’t try to ignore them, hide from them, or give in to them. You are no good to anyone if you are over run with emotions. The best way to keep emotions in check is getting a good sleep even if you go to bed till 3 a.m. as I often do. Rearrange your schedule, ask loved ones not to disturb you, disconnect your electronic devices, turn off phone, get dark curtains, and tell yourself this is your time. Prioritize yourself. I have found that if I allow myself to sleep, I feel almost normal and can tackle things much more efficiently and effectively.10432937_753295454728183_4275273717487230047_n(art by Ross Webb)toriaband

Make time for what makes you happy. Allow yourself time to pursue new and old dreams making reasonable short and long term goals. This means spending time helping others by being a mentor, a shoulder to lean on, a caregiver, and an advocate. Always wanted to paint, write, play an instrument, change careers, travel, learn a new language, or simply spend more time with family and friends? Be bold and try doing it this year. I have decided to go back to an old passion of mine- singing. When I began having dysphonia (vocal cord dystonia), I was saddened and gave up doing something that I loved. Although, I no longer can reach high notes, I have discovered a range I never thought possible. This is sure to make life interesting and perhaps even improve my hypohonia by strengthening my oral-pharyngeal muscles.

Find a way to move and stay active. It’s a lot easier to exercise routinely when you have a friend by your side. The best way to maintain an exercise routine is finding something you love and can fit your physical needs. Whether it be tango dancing, swimming, boxing, or bicycle riding, all of these activities are sure to not only improve your physical and emotional disposition. But, don’t neglect your brains need to be exercised as well. By participating in social gatherings and learning new things as I mentioned above you will improve your cognitive status. I love doing all sorts of puzzles. Find things to challenge you even if it’s eating with your eyes closed to discover the texture of foods or taking a different path on your drive home or customary walk. 2017 MJFF DC-292_zpsumbzibpd

Self- love is the underlying message which can only be achieved by boldly embracing our weaknesses and highlighting our strengths, helping others and being kind to others, and opening ourselves to new possibilities. Never forgetting to always smile and be thankful for the little things.

Happy New Year 2018!

xoxo

Parkinson’s Diva

copyright @2017

all rights reserved by Maria De Leon MD

 

parkinson's disease, Parkinson's Health

Nasal Congestion: The Cold or PD? By Maria De Leon

251343312-medical-cold-flu-red_nose-runny_nose-family_trait-mfln6435_low

It has been a while since i written here but i could not let the year finish without me saying one last note and thanking all of you for being part of my PD journey this year. i hope We all get to a new healthy start…

At least in this side of the world, we are just commencing the cold season in which many of us may unfortunately develop a cold.  As you know having a cold is fraught with nasal congestion, stuffiness, runny nose among scratchy sore throat and other symptoms.

But after having a viral infection that wiped me out for more than two months and caused severe upper respiratory problems, I began to notice that sometimes the stuffiness did not respond to common decongestants rather improved with me taking my levodopa.

So, I thought i would address this issue which some of you might have experienced or are continuing to experience these nuances wondering why symptoms are persistent or coming and going more frequently? Just as I seem to wake up more congested in am when my medicine levels are lower and quickly clears after am doses kick in.

First, let me say that rhinorhea- ‘runny nose’ has been found to be much more common in PD patients believed to be up to 5x more common in people with PD not related to allergies or other contributing causes. this is believed to be a non-dopaminergic ( non-motor) symptom.  although, still not very well recognized or studied and even less commonly talked about is actual nasal congestion- which I believe is dopaminergic mediated and appears as the levels of dopamine are weaning off. This why i believe many patients including myself have a thick nasal mucus pooling in the back of the throat which makes it difficult to swallow. this is not related to post nasal drip, allergies or infection.

The former symptom of  runny nose can be extremely bothersome just the same causing frequent post nasal drip;  for those who have already difficulty swallowing it can be even more trouble some causing chemical pneumonia, and frequent cough, or choking episodes. Because there is natural increased salivation with eating many might feel the need to avoid social meals. However, for increased salivation (sialorrhea) Botox is the best treatment in my personal experience because has no systemic side effects and effect last  3- 6 months.

There are many treatments for this problem with primary use of anticholinergics as a first line. I often used Levsin -(hyoscyamine). This pharmaceutical drug comes in liquid, pill and injection form which is extremely convenient.  I prescribed frequently to my patients to reduce secretions. Although, it is an anticholinergic  and can potentially cause confusion at small doses I did not experience this. However, if someone has dementia or hallucinating , this drug probably would not be best option. Another anticholinergic is one applied via a nasal spray (Atrovent- commonly used for bronchitis, copd) recently studied in a very small trial with good effects.

Of Note: Apokyne (apomorphine) has runny nose as a common side effect.

But, on the other hand nasal congestion is even less talked about. this does not respond to decongestants, antihistamines very well. It only improves with intake of dopamine medications. There is  absence of literature on this subject. The only thing I found upon doing a literature search was a great deal of patient forums mentioning this problem and a small report on 26 PD in which authors concluded that “women over 60 were more likely to have this problem“.

However, if we look at pregnancy where levels of  dopamine decrease and other hormonal changes like elevated levels of prolactin exist there is a tendency for women to develop nasal congestion which resolves after pregnancy.  Interestingly, enough is during pregnancy that some women may fist develop signs of pd or have worsening of symptoms. Hence at least on the surface a tangible connection between low dopamine levels and increased nasal congestion. The nasal congestion is caused by excess blood circulation swelling the tiny vessels of the nasal mucosa leading to a stuffy nose feeling. Plus, remember that dopamine is a vasoconstrictor meaning they cause the blood vessels to decrease in diameter. But, if there is not enough dopamine circulating then vessels will dilate which really have same effect as blood rushing in widening tiny vessels causing a sensation of fullness and stuffiness.

If you have watery itchy eyes, sore throat, chills, fever, or increased sneezing then these are signs you are NOT dealing with nasal congestion from lack of dopamine/Parkinson’s.

You should seek medical attention especially if symptoms last beyond a week.

If you are told by your physician that there is no cause for your congestion as infections, allergies, and other irritants have been  ruled out talk to your neurologist/MDS about adjusting your medications. but first pay close attention when this occurs, keeping a diary and also if there are other motor symptoms involved like increased stiffness, tremors and so on during this time make sit a lot easier to associate as pd being the culprit. Now, before i take any decongestants i make sure i take my medications which always resolves my congestion unless I have other symptoms.

In the meantime, here are a few home remedies you may want to try for your congestion.

  • Use Humidifiers – but don’t forget to rinse with soap and water periodically to avoid mold and other bacteria from growing.
  • Inhale steam or add some Vick’s vapor rub to hot boiling water and breath in.
  • Use saline drops or saline gel (found in baby isle at stores)
  • Stay hydrated- drink more fluid than usual during the cold season
  • Use petroleum jelly or Vick’s vapor rub gently applying a very tiny dose in nasal passage a couple of times a day.
  • Take Vitamin C
  • Drink ginger tea- this not only helps with inflammation of mucosa but also stomach inflammation and helps nausea and increases digestion.

Happy Holidays everyone!

Many blessings and well wishes to all and hope to continue this journey with your support in the upcoming year!

Sources:

http://n.neurology.org/content/70/6/487

https://www.ehealthme.com/cs/parkinson-s-disease/nasal-congestion/

http://www.medscape.com/viewarticle/827413

@copyright 2017

All Rights reserved by Maria De Leon,MD

medications in Parkinson's, parkinson's disease

What to do when you forget to pack your medications when traveling? By Dr. De Leon

Stay Calm –  You Got this!

I love traveling but absolutely hate packing all those medicines; especially when I will be out for a week or longer. Typically, I carry my own stylish Vera Bradley pill box which carries enough medications for day to day activities even up to 3 days of away stay. However, because like many of you, I take close to 20 medications regularly (my poor liver). Some days more, if I have other problems like a sudden migraine. Hence the problem of remembering all the medications that I might need like anti-inflammatories for that back pain, or extra muscle relaxants in case of severe spasm after sitting on a plane for a long time. size-os

So, I have a small travel bag – which you should also get and stock with all the essential medications required for daily functioning such as Stalevo, Rytary, Neupro, Mirapex, Azilect and so on.  I put all my bottles to ensure I will always have enough just in case unforeseen circumstances occur and travel is prolonged. Within the bag you should always keep a list of all of your medication names, doses, prescribing doctors name along with the pharmacy name, and phone number in case you forget something while away. Having a list also comes in handy, as I experienced recently in attempting to fill my mom’s medicines after hurricane Harvey.

If you use national pharmacies it is easier to transfer medications from one city or state to another in case of emergency without much problems. This may not be the case if traveling internationally. In those cases having a bottle with your name and medication as well as a list may expedite the process of granting refills by an outside physician who is not otherwise familiar with your care or diagnosis. Which also brings me to the point of always carrying a letter from your doctor stating diagnoses especially if traveling abroad.vb

If you use local pharmacies another pharmacy outside of your area can still get a hold of your information, but will require some time and effort on both of the pharmacist and on your part. After hurricane Harvey, there was a long line of patients attempting to get their prescriptions transferred and filled from affected areas in many towns across Texas. Getting medications can be more challenging and take longer to do in case of disasters as we have seen recently. This is because the local pharmacies in affected areas may not be operating to give info to the pharmacist you are trying to use nor your doctors available as was the case after Irma, Harvey and Maria. Since doctors are sometimes needed to confirm the medications that you are on or require. Fortunately, my mother uses Kroger a larger chain which has a store in town which can pull information from its national / regional database. Yet, after my mom got one of her medications, she insisted this was not the right one so she refused to pay for and take it home. Had she had her card and list of medications she would have known as would I that was she was given was the correct one and gotten it for her. So make sure a loved one also has a list just in case it gets lost, misplaced or damaged.med list

Also, prioritize medications in order of importance and ease of acquisition. Are these something you can buy over the counter -if so not such a big deal if you forget? Are they available in areas that you are traveling to? For instance not all Parkinson’s medications and formulations are available around the globe. Do your research and make sure you take extra if traveling to areas where your medicine is not found.

If forget something that you can buy over the counter or readily available by visiting a pharmacy then you must go to the ER in order to obtain. Once again easier to do so if have proper documentation.

What if you forget a medication which comes from another country?  As I did when I went to Philadelphia recently. I forgot my domperidone because I took a dose the morning before departing and left on the counter rather than putting in my purse. You can either find a substitute or find ways to decrease the need for these medications by altering life style, diet, increase water intake, finding natural remedies like peppermint tea for short term or incorporating all of the above. These techniques might get you through in a bind but will not be effective long term. But important to note that you may still suffer consequences of not having medication which may take several days to recover from; as I did after my travel experiencing severe gastroparesis. If it’s a medicine essential for Parkinson’s main symptom management like a dopamine or dopamine agonist do not try to do without because consequences can be detrimental and even deleterious.

@Copyright 2017

all rights reserved by Maria De Leon

 

disability in PD, parkinson's disease, Parkinson's Health

Dealing with Trauma and Loss in Aftermath of Harvey : By Dr. De Leon

“My Grace is all you need, for my power is greatest when you are weak…” Corinthians 12:9

 

Dealing and coping with tragedy especially when is wide spread like a natural catastrophe can be extremely difficult not just for those directly involved but also for those who are involved in the relief process. Even those indirectly involved like distant family members can experience symptoms of anxiety and depression after the ordeal.

I myself got discombobulated for an entire week from stress and worry of staying in contact with family and loved ones in affected areas. Not to mention staying up all night to hear from loved ones. On top of being glued to the television set day and night like the rest of the nation to see what happened next. My symptoms worsen and my sleep cycle was completely thrown out of its usual pattern. After the storm finally ceased, I slept for three days at various intervals of the day just to allow my body to catch up and deal with the stress.

My heart grew heavier thinking of the thousands of patients who were stuck in their homes with flooding waters all around, or worse rising in their own homes trying to survive and flee; just as my mother’s neighbors had to do in the middle of the night with one of them suffering a stroke. Yet, no medical aid was available to help her and many like her in the entire Gulf coast area. This knowledge only fueled my prayers for the many Parkinson’s friends I have throughout the area.

So as many have suffered strokes, heart attacks, and many others with chronic illnesses like PD especially those in middle to end- stages suffered continue to struggle trying to stabilize their symptoms after being thrown into a whirl wind, perhaps even more than a few being thrown down a descending spiraling path from missing a single dose, the impact can be overwhelming and even paralyzing.  Unfortunately, as many have left their homes in haste without the much need medicines, oxygen and equipment, this descent can be even harder to handle.

Today, I humbly write about ways to deal with this catastrophic loss in an attempt to provide my readers with strategies to cope as well as provide some semblance of hope. Especially considering how difficult it must be to deal with tragedy in the midst of chronic illness even for those of us not ill, the hardest challenge still remains ahead of us- trying to return to normalcy.

So how do we cope?

One day at a time. Again, I say this from the most humble of places having survived several traumatic experiences in my own personal life.

Having PD myself and not being able to work any longer to maintain a significant livelihood much less replenish any material things lost, I can imagine the fear, anxiety, and uncertainty the future must hold.

First, we must be grateful to be alive. Although, as horrific the situation of seeing devastation all around and losing people and things you cherish was and not easily phantom by outsiders. But, if you are still alive you are not only a survivor but a victor.

We might have lost material things, but remember those things are replaceable. Having myself lived through several episodes in my life growing up which required my family to start from scratch each time I can totally empathize with that feeling what do we do now? Where do we go from here? How do we start again? Sleeping on hard floors, having only the clothes on your back, not knowing where the next meal is coming from, what the next day will hold…can be nerve wrecking especially for those of us who are already ill and don’t do well with changes especially not of this magnitude.

Again, I say one day at a time! Rest, pray, rest some more, take care of yourself and your needs first before you tackle the other thousand challenges ahead. Remember it took me 3 days to feel like myself once more and I was NOT even in the middle of the ordeal!!! Give time time…

It’s ok to grieve! Don’t try to stifle your emotions …cry, scream, and talk to others like doctors, nurses, counselors…whom ever to help you heal inside first. You must be honest with yourself. You just survived a traumatic ordeal don’t try to sweep under a rug like nothing happened.

 

But, first before sleeping and resting get your medications in order ASAP.  Then gather your family, friends, and loved ones to help out. Now more than ever you need to stay connected, do not withdraw or isolate yourself. Ask for help if you cannot physically, mentally or emotionally handle the rebuilding alone, in fact you should not go at it alone.

It is of paramount importance to establish a routine once more even if in a shelter or temporarily living with friends and/or relatives… Routine needs to begin with getting medications back on track.

I was not even there personally but just dealing with friends and family in path of Harvey and watching news continually for 4-5 days, I dreamt of being in floods for several days. So I can imagine this might be a recurrent dream or nightmare for many of you as well. Get counseling and help if you need it if you are relieving the event and is causing anxiety and stress (post-traumatic stress- common).

If watching or hearing the news about the flood cause you to relieve the anxiety then limit your exposure to the media regarding this subject.

So after the shock wears off and feeling of relief passes you may experience a whole host of emotions from denial, sadness, hopefulness, helpless, as well as fright.

You might also experience physical symptoms that are common for trauma victims and should not be ignored like poor sleep worse than usual with Parkinson’s, increase sadness, depression, paresthesia’s, headaches (some of these may be migraines due to low barometric pressure in the area as well as elevated blood pressure from lack of sleep, and stress), may also experience increased memory problems, concentration problems, changes in appetite, increased fatigue, palpitations, and increased pain. ( some of these symptoms resemble panic attacks which can be a manifestation of wearing off and under medication – so don’t automatically assume symptoms are all related to trauma).

Make sure you ask a nurse or health professional to check your blood pressure and sugar level (remember dopamine decreases insulin output and stress increases cortisol levels increasing sugar in body) if having increased or usual headaches. Discuss these symptoms with health professional, if you experience any of these changes. Having taken care of many patients with PD over the years, you will likely benefit from increased dopamine to help you deal with these symptoms along with an anti –depressant, anti -anxiety agents ,and/ or sleeping pills till normalcy begins to take place. If you like coffee find some especially black and if you don’t this might be a good time to try. This will boost your energy and help your focus, mental acuity and your gait. However, sleeping meds and tranquilizers like Valium if taken every day lose their affect so I suggest taking every other day intermittently to have a longer positive effect as you deal with aftermath effects. Even though you might not be able to physically go to your physician call them and/ or contact a PD support group locally (HAPS) or nationally (Parkinson’s Foundation) to help you through the process.

Be involved with other survivors…if you are in a shelter talk to other PD patients who might be just as afraid or scared as you are. Help with meal handouts or whatever you might be able to assist with. This will give you a purpose and boost your serotonin levels to decrease likelihood of depression and improve sleep.

Do not make any major life decisions during this time of recovery and grieving.

Above all the recommendations and strategies for surviving trauma of this magnitude is putting your trust in God. This is the one constant which has sustained me through many personal crisis and traumas …during those several devastating situations when my family lost everything not once did we go hungry nor live without a roof over our heads. Some instances, might not have always been the most ideal like when we were forced to be separated for a couple of years due to circumstances. However, we were safe and cared for and those times have served me well in my life in more ways than one. I have learned that no matter how big the storm is eventually the sun will shine once more. Before you know it, you will realize how far you have come and not even know how you did it except for the grace of a God.

Prayers and love,

I am here to talk to anyone who might need an ear or advice on their medications, situation etc. email me @ deleonenterprises3@yahoo.com or call 936-558-7311

You may also call the Houston Area Parkinson’s Society: 713-626-7114

Parkinson’s Foundation Hot line- 1800-457-6676

FEMA is paying for rooms – call and register 1800-621-3362

apply for FEMA aid -www.disasterassistance.gov; 18006213362 (need ss#;address of damaged home, description of damage, info on insurance, phone, mailing address, bank acct # for deposits)

http://kfdm.com/news/local/missed-work-because-of-the-storm-apply-for-texas-disaster-unemployment-assistance

Medtronic Storm hotline- 1800-646-4633

if you have disabilities call Port light Hotline 800-626-4959

call individual pharmaceutical companies for assistance: or general prescription assistance  program 1888-331-1002

call Nord as well

@copyright2017 all rights reserved Maria De Leon

parkinson's disease, Parkinson's Health

Ketogenic diet in Parkinson’s disease: helpful or not? By Dr. De Leon

We all feel so bad that we at times feel desperate and would do ANYTHING not to feel miserable even eat rocks if we thought this would make us feel better.

So perhaps some of you have heard some in your circle mention a ketogenic diet. But, what the heck does this mean? This is an extremely high fat, normal or adequate protein and very low carbohydrate diet primarily instituted back in the 1920’s for the used of  refractory or intractable epilepsy in children.

However, this is not a diet for the faint of heart it requires discipline and fortitude and above all a good support system. I am afraid that many of the stories that have been circling around in the Parkinson’s sites regarding the exaggerated benefit of the ketogenic diet is just that -a myth. Furthermore upon closer inspection, the ones I have reviewed are not truly considered ketogenic diets some at best approximate a modified Adkins diet. A true ketogenic diet and any diet, in particular in a chronically ill population as we are, requires the close supervision of a dietician. The ketogenic diet typically is begun in the hospital or in a close supervised environment. This is because it is extremely strict with calorie, protein and fluid intake. The name ketogenic means it produces ketones as the body uses fat as its source for fuel rather than glucose as it typically does. The body particularly the brain and other organs like the heart, the eyes, the kidneys are exquisitely sensitive and prefer to use glucose as its main source of fuel in the form of carbohydrates (simple and complex like breads and pastas and pure sugar). The brain alone consumes roughly 20% of the glucose.

The typical diet consists of  3-4 grams of fat for every gram of carbohydrate and protein. The dietician recommends for kids – i imagine same for adults, but don’t have that paper, 100 grams per kilogram (2.2lbs) of body weight and 2 grams of protein for every kilogram. must have incredible disciple, fortitude and a lot of assistance to be weighing in food multiple times a day before preparation. Also eliminates any deviations like surprised birthday parties at a restaurant or night out with the gang because a single day even a meal of going off the diet aborts the entire diet effect. This is the typical 4:1 ratio diet.

It is an extremely difficult diet to keep as you might be able to tell just from my description if you are to do it properly.  Those that do within the PD population only about a third notice some improvement of their PD symptoms. But, even so most can not maintain this regimental diet past 6 months. ( these patients were admitted under the care of a physician in Boston who monitored and regulated their diet daily for months- still only these many improved and could not last longer than 6 months with all the support available to them).

Complications of staying on this type of diet for too long aside from the difficulty of maintaining long term because even a drop of toothpaste can have more sugar than anticipated and throw diet off the curve. Those that choose to enter into this type of treatment should do so ONLY under the guidance of a knowledgeable physician who would monitor routinely their blood and urine among other tests.

Long term side effects of prolonged ketogenic diet:

  • kidney stones
  • increased cholesterol
  • constipation
  • dehydration
  • weight gain
  • bone fractures

plus these persons will need to supplement diet with vitamins since diet lacking in essential nutrients – also as i mentioned before the glucose sensitive organs don’t take lightly to being deprived of glucose and they begin to infarct/ die out. Looking at the adverse effects, these are some of the most troublesome and bothersome problems we experience as Parkinson patients aside from kidney stones and high cholesterol. why would we want to make our lives more miserable?

so in my personal and professional opinion this diet would be at the bottom of the pile to try as last resort if everything else in the world had failed.

resources:

http://www.epilepsy.com/information/professionals/diagnosis-treatment/ketogenic-diet

@Aug,15 2017

All Copy rights reserved Maria De Leon MD

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

Update on the Role Technology Plays in PD: By Dr. De Leon

This past weekend I had the pleasure of attending the 200 years after Parkinson’s symposium hosted by HAPS. the staff did a superb job with nearly 400 attendants and a line of extraordinary speakers.

Over the next few blogs i will discuss some of the salient points that were brought up at this meeting. one of the most interesting of topics was the question of what, how, and when does technology help in the daily care and treatment of PD patients?

I know this was a big topic at the world Parkinson’s congress in Portland this past year and continues to plague the minds of both patients and clinicians as well as scientists-  how can we best use this technology already available to help us live better lives?

Although, we live in a rapidly growing technological world – not all people are technologically savvy or able to have access to these wearable devices and other technology. Secondly, even though this type of acquisition of data can lead to more robust numbers, we are not entirely sure how to use it. Moreover, the legal aspects have not been defined. Who owns the data? the doctor? the patient? the creator of the apps or technology? not so simple. But, there is a whole new field that could potentially emerge relating to this.

In my case, the legality is still a big hurtle to over come never mind how to store data so that is secure and get reimbursed for your time. Here in Texas, telemedicine was finally approved for use in various fields which opens up opportunities for people like me who have disabilities but are still cognitively able to be of service to society but navigating the pitfalls and uncertainties of how to provide care from home to a patient also at home is still not clearly defined by the laws. So I wait patiently for my time to be useful once more as a MDS.  especially since it is speculated that > 40% of those PD patients who have medicare DO NOT receive care from a neurologist. Thus increasing the morbidity, mortality and decreasing quality of life and independence.

In the meantime, we must find ways to make use of the technology available to fill in the gaps that currently exist in diagnosing and treating PD patients. We all know that although MDS can have a very high rate of accuracy in diagnosis is not 100 % proof. We do make mistakes and most usually come about from experience and knowledge base of individual making diagnosis. further, we all know that for what ever reason, happens to me all the time, mostly because of stress and anxiety which revs up the dopamine production; we tend to look much better at doctor’s office than at home. Thus, giving sometimes an erroneous picture of our illness. we may supplement our current tools through the use of TOMS- technology based objective measures.

There are 2 forms of TOMS:- (e.g. sleep studies, cardiac monitoring)

1.clinical tests conducted by physicians in standardized environments to objectively measure specific behaviors/ symptoms

2. Self- administered tests- using devices to detect and monitor specific functions or over all abilities in daily life.

We all have smartphones, watches, apps, table based tasks, other body sensors which can be used to acquire data.

However, it was discovered that 32% of users stop wearing wearable devices after 6 months and 50% after a year. Novelty wears off.

26% of apps are used only once, 74% ARE NOT USED MORE than 10 times.

plus, most of the devices only measure motor symptoms- leaving  still a huge problem in dealing with non- motor issues – which in my experience are the ones that cause the greatest interference in quality of life and lead to unfavorable life style changes.

Some on going initiatives to evaluate some of these toms are…

  1. At Baylor college of medicine under Dr. Jankovic direction, there is an ongoing study using a wrist wearable device (Parkinson’s kinetigraph (PKG)– to monitor medication response- you wear for 7 days and you are required to click a button when you take medication. this will generate a relevant report upon which actions can be made by doctor.
  2. Another one is the  EU project CUPID-  closed loop system  for personalized at home rehabilitation for PD patients. their objective is to develop clinical guidelines for developing individual customized rehabilitation programs using technology
  3.  Parkinson’s voice initiative for diagnosing PD – many of you probably have heard or participated in this already- where you simply call in and speak over the phone and make certain vocal sound weather you have pd or not… the crux is to enter enough data from all ages, pd and non pd, both men and women to develop an algorithm that would help detect the difference between a healthy person and one with pd.
  4. Also have the mPower smartphone App for PD ( introduced in 2015 by Apple) – ongoing  looking at tasks like motor initiation, balance and gait, hypohonia and memory. some data like tapping two fingers before and after are being evaluated in those in Sure PD3 ( study of urate elevation phase 3).
  5. another one that everyone can participate in from the comfort of their home is the Fox Insight- this is a questionnaire of virtual visits every 90 days – this is an online longitudinal observational clinical study to generate BIG data – however since findings are not objective the outcome is still uncertain – However- the tools and data within allow the participants to learn more about their illness and how to manage there care best.
  6. NPF Parkinson’s Central- can help provide information regarding disease and treatment and connect you to near by specialist.
  7. 9Zest Parkinson’s therapy app- once you input the required fields it will generate personalized exercise regimen with accompanying videos.
  8. Beats Medical- this app provides auditory cues to help with walking ( $300/year after 2 weeks free trial).
  9. Google glass– this was designed to help with gait and freezing via auditory and visual cues. however, when they put in the virtual reality mode patients did not do well getting patients CONFUSED!
  10. EMMA watch – help with writing via vibratory feedback

In order to be successful these devices first must be minimally intrusive in our lives. these have the potential to radically change the care of PD in the future but several hurtles still have to be over come such as standardizing these technologies, as well as assessing their true efficacy, and validity is not only imperative if they are to be of any value but also remains the biggest challenge to date; particularly as more and more devices and apps become available for patients to use.

If you are participating on any of these studies or have a device or app that you use regularly, i would love to hear from you. I am thinking of calling Dr. Jankovic about the wrist device and are already participating in Fox insight and have participated over the last couple of years in other similar endeavors of acquiring massive data longitudinally. Perhaps some true patterns can  be identified which can lead to new treatment modalities to improve the life of every individual living with PD.

 

@August2017 All Rights reserved Maria De Leon MD

 

 

 

 

 

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

Is the use of complement alternative Medicine (CAM) a good choice for PD? By Dr. De Leon

I thought that it was important to cover this topic since I read and hear many of you discussing the viability of these alternative treatments. Especially since there is a growing interest in our community to resort to use of complementary and alternative medicine (CAM). This means using health and treatments for maintaining wellness previously not employed by western medicine. therefore some people use these treatments in place of (alternative) or in conjunction (complimentary). the goal of these therapies is to focus on the person as a whole- which I and most doctors are in favor of since there can be no healing of the body if the emotional and psychological aspects are not first addressed. However, there is a trend in this country and around the world to forgo conventional western medicine so many are now using the term “integrative medicine.”Image result for living well quotes

This has increased in the last few years, up to a 40 percent and I suspect that as the cost of medicines, healthcare, and number of people with chronic progressive diseases like Parkinson’s, Alzheimer’s and so on  increase so will the use of these treatment modalities. Thus, I felt it to be my duty to discuss exactly what we are dealing with in order for us to become informed consumers and make the best treatment choices.

It is also extremely important to note that in the same time period the rise of liver disease and death due to liver failure has increased from intake of supplements. One of these popular deadly supplements is Kava Kava used for stress and anxiety relief. This is because unfortunately “naturalDOES NOT necessarily mean SAFE! Not only are these products not safe but for those of us who have chronic illnesses and take many other medications or have other concomitant illnesses like high blood pressure, diabetes etc. these products can interfere with the effect of those medications or worsen those other symptoms. For instance, I was extremely interested in finding some weight lose substance especially if it was “natural” since all the prescription medicine interfere with Parkinson’s directly or with the medications. I though that perhaps the popular Garcinia Cambogia would work so I bought a bottle like the rest of millions of people. First, remember that these products are not FDA approved so have variation of amount of needed extract ranging from 50 %to 80% of 72 pills tested. However, if you read the extremely fine print it contains the same chemicals used in many of the other weight loss meds which are contraindicated in people with Parkinson’s and if you should take it could cause severe serotonin syndrome and death. Needless to say that bottle went straight into the trash.

But, you must always be savvy when using any “alternative” herbal or other treatments. remember, there is NO cure for PD. If there were I would have told you and the whole scientific community would be shouting it from roof tops! Trust me, it would not be a secret. Do not fall for sensationalized news and cure all’s!. Beware of the power of the placebo effect and also of charlatans who take advantage of people in need and in pain. The mind is extremely powerful. Mind over matter we always say. Is true if we believe something so strong we can make it happen for a short period of time. This is why patients that participate in research studies do better over all. However, these studies are not controlled or double blinded and usually last 6-8 weeks the exact time before the placebo effect wears off. Do Not purchase anything that promises a quick fix or a cure! No such thing exists. if it sounds too good to be true than it probably is. however, there may be some supplements that may be beneficial for certain individuals although in larger studies have not proven to be significantly better to treat disease than placebo. These supplements include Coenzyme Q 10 – is expensive and should buy from Natures brand only  and must take at least 600 to 900mg – some people cant tolerate due to nausea. I was one of those people. but, this supplement has been used effectively and safely in many other neurological illnesses by me and my colleagues. other than this I really don’t have any other supplements that I would recommend consistently due to lack of evidence or lack of safety like many of the mucuna puriens out here which are not regulated. Plus, we do not know the long term effects of these substances. The marijuana as a potential treatment, as I spoke and blogged previously, is still extremely controversial because there are so many different types if you will and most are synthetic not natural- so we don’t have the whole story. However, studies have indicated that marijuana can worsen sleep cycle and depression 2 of the biggest problems in PD. At present, a study of marijuana oil is being conducted at university of Colorado for those interested in this topic further.

Now, within this realm of CAM we have treatments like

  • Mind-Body Medicine (e.g. prayers, mindfulness, meditation, art therapy)
  • Whole medical systems (e.g. homeopathy, ancient healing systems -acupuncture)
  • Biologically based practices (e.g. coenzyme Q)
  • Manipulative and body based (e.g. massages, yoga, dance etc.)

In the end, it is essential that you have a team of professional who you trust and will listen and treat body, mind. and soul.  We do know and have evidence that holistic treatment works best for over all well being. I am proof of this. However, what ever complementary, alternative, or integrative  treatments you opt to do you must maintain your doctor informed at all times and make sure he or she is on board with the plan so they can guide you through and avoid the perils of possible liver toxicity, overdose, or serotonin syndrome. But, also to ensure that you are being safe and not hurting yourself or making your illness worse. Remember, we do have many new drugs and initiating early treatment has proven to be most effective increasing quality of life and decreasing disability. So why waste time with unknowns (medications, herbs, remedies, treatments) that can be costly and potentially harmful in both the long and short term?

My philosophy all good things in moderation. This includes laughing, dreaming, spending time with friends and family and being useful to others as well as eating and sleeping well with an active life style of both mind and body.

love to hear your opinion on the subject…Image result for Living Simply Quotes

thanks

 

 

 

 

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

Subtle signs that show you have too much stress in your life: By Dr. De Leon

I have decided that “stress does not go with my outfit. so, I am breaking up with it!” you should do the same….. after all is not the stress that kills us but our reaction to it.

I write to deal with my own stress although sometimes I just need time away from everything and everyone for a bit to recharge my body and mind… this is crucial part of dealing with life’s stresses.

We all know that living with a chronic progressive neurological disease like Parkinson’s can be quite cumbersome all on its own. but, this does not shelter us from other life stressors like dealing with family, financial burdens, ailing parents, teenage issues and so on.

I have found that the greatest stressor for me in living with an illness is the disruption in my routine weather is a positive force or not. This disruption, especially if extended, throws me into a frenzy from which it takes a few days to a week to recover. During this recovery time, like today, I can be a bit of a bear to those near me. When I am physically exhausted, worse if there is also an emotional component, I tend to feel out of sorts and extremely irritable. What makes it worse is knowing I need down time to recover but not finding the space/time to do so because there are family demands on hand which must be taken care of. I absolutely hate when my husband is off when I am in desperate need of respite because although he does his own thing and does not put too much pressure or demands on my time, there is that feeling of disappointment he gets because I don’t have my act together. then comes the guilt on my part for neglecting him when he gets such limited time to spend with me and my daughter doing family activities. Even though, I am absolutely exhausted and am in dire need of sleep, I feel obligated to get up after only 3 hours of sleep because he and my daughter have started morning early with a 6 a.m. run and are ready for breakfast by 7 a.m. And thus, the day begins with me barely functioning, stumbling, and feeling quite picked only to be made worse by my daughter asking me complex questions half an hour later even before my medicine has had a chance to kick in. so I loose it. Worse since she got up so early, she too is a bit irritable. I decide its time for everyone to go to their quiet place and recuperate.

But, why do we allow ourselves to get this way?

Surely, there are signs that warns us of impending melt down.

Failure to recognize the signs or ignore them as I do when I am in the midst of traveling to speak, finishing a book, dealing with mom’s car problems (I don’t even deal with my own) and other family drama can be extremely detrimental.

What are the signs that speak volumes of our need to calm down and regroup? the thing is that these same symptoms can be considered non-motor symptoms of PD which can cloud the picture even further. But, with a little common sense and careful observation of our symptoms we can learn to differentiate and change our course of action to diminish our stress levels.

First, increase of head aches: who does not have pain in the head especially when hungry, tired, sleepy, and with neck dystonia? massage your temples and your scalp and neck even use some mint oil extract and place in forehead and temples. This will sooth you. get facial and scalp massages. if cant afford this and hands too weak to massage yourself use a lemon and rub around your head, neck. plus citrus aroma will also be soothing.

Second, jaw pain: may not be related to dental problems or oromandibular dystonia but rather our involuntary clenching of our jaw when stressed. this also can trigger headaches. Relax your mouth and keep teeth apart when dealing with stressful activities – periodically check by stopping what you are doing and relaxing your jaw if it feels better -you are clenching and keeping it too tight. Give it a bit of massage at least a couple of times a day. Insert one finger/thumb inside your cheek and place your thumb/index finger on the outside and rub till you feel all the knots disappear. (don’t forget to wash hands first)

Third, skin irritation. Do you suddenly feel like your skin is itchy all over? is it breaking out? although we know that PD can cause skin dryness especially in scalp and also cause eczema. if you find yourself scratching a lot all of a sudden like I have been these last few days without having changed anything to your medical regimen, diet, water intake, or your hygienic products then most likely due to stress.

Fourth, Bizarre dreams. Once more, we know strange and vivid dreams are part of the disease. But, if these have been under control and nothing has changed in regards to other motor symptoms nor medications and not being consuming alcohol before bedtime, this can be another sign. usually these drams are nasty and disturbing.

Why should we care about controlling our stress?

It is important to deal with the stress because uncontrolled stress can lead to depression, we are already at risk with PD. Also, it can lead to increase weight gain by allowing our bodies to store more fat. It also increases our blood pressure. Lowers our libidos and increases insomnia both of which are already a problem. Plus, it decreases concentration and increases memory problems.

Ways to treat stress:

#1 make time for yourself– so after the melt downs – I excused myself and went to bed. nothing like a good refreshing nap to restore clarity. Do things that make you happy- I go to movies, shop, read, sing, and go out with my girlfriends.

#2 Eat well– do not skip meals or skim up on nutritious meals because these have the power to reduce the effects of stress and stir you away from sugary cravings. home cooked meals are the best- cook when you feel best and store the food. I cook at night often. Cooking lasagna in oven as I write this blog.

#3 Move about– find way to release some endorphins- shake, dance, jump, walk, exercise. I love dancing and singing best way to reenergize. Plus is a load of fun if you do with those you love like your children or spouse.

#4 Sleep- This is the second most crucial after making time for self. talk to your doctor if having problems may need sleep aid ( e.g. sonata, lunesta, melatonin), antidepressant ( e.g. Elavil, remeron), antianxiety (e.g. klonopin), or antipsychotic ( e.g. Seroquel). I personally take klonopin otherwise I could not have restorative sleep. You will feel so much better after a good night sleep and you other PD symptoms will also improve.

#5 Don’t forget to breath! when you find yourself getting completely overwhelmed, stop and close your eyes and focus on your respiration until is calm. I do this at least once a day. problem is remembering to do this when I am busy chauffeuring everyone around. working on it just like I do my stretching in the car even when driving- I must learn to quiet my breathing even when I find myself in a noisy crowd or driving.

So lets learn to stop reacting to the stressors in our lives rather become proactive in preventing and changing our attitudes by letting go of perfect and nonessential things which do not contribute to our well being.

Image result for stress quotes

copyright@2017

all rights reserved Maria De Leon