Best way to Deal with AM (early morning) offs! By Dr. De Leon

” When the world careens out of control, we can rest in the fact that God spun this world with a simple word. Matter from emptiness. Beauty from void. Community from chaos.” Mary E. DeMuth

Today, I will talk to you about a subject that is so important for us with PD to know and understand. Many of us talk about ‘off’ periods but still have some confusion about what that really means. First, you should know that there are 4 ‘off’ periods we doctors focus on. These usually are in relation to levodopa.

#1 end of dosethis is known as the return of PD motor and non- motor symptoms which resurface once medication effect ends. For instance, if I have tremors which lessen or go away completely with intake of levodopa when the levels in the blood begin to fade before my next levodopa intake there may be a resurfacing of tremors. What we want is for symptoms to be continuously suppressed with little or no intervals between time one dose effect ends and the effect of next dose begins.

#2 peak dosethe levels of levodopa circulating in our blood stream fall into a bell curve shape. At the beginning, levels rise slowly and sustain within therapeutic range for several hours. However, as our disease advances we may experience a fast rise going above the therapeutic range and then drops faster in a shorter amount of time. So not only could you experience end of dose effects sooner than before but at peak level of dose because outside of therapeutic levels one may experience- side effects like dyskinesias. So a patient may feel good for a short period of time have dyskinesia’s at peak for 30 minutes then go back to normal.

#3 early amthis is when patients have gone a longer time without medication through the night and basically have worn off completely when they arise and essentially are experiencing an end of dose effect.

#4 sudden offwe know that when we first start taking levodopa, our brains are exquisitely sensitive to its effects, meaning that a low dose can go a long way. As time goes by the length of time it lasts in the system diminishes. But each dosage should last same or nearly same amount of time in system i.e. 6 hours every time. However, in some people the effect of medication in regards to time in which is effective becomes unpredictable sometimes it last 6 hours, others may last 4 hours while other times may not have an effect on motor symptoms. These episodes are called sudden wearing off.

The more you know the better you will be able to discuss changes and fluctuations with your physicians so they in turn can adjust your medication to fit your needs.

This I believe is one of the key reasons why so many of us are not as well controlled. Sometimes we erroneously assume what is disease, what is side effect and what is meant by being ‘off.’

I will discuss treatment for all these types in the next few weeks. Now that all of you are caught up in the terminology, I will focus on early am wearing off because I think this is a very common problem for most of us who live with PD. Plus, it is one of the easier things to treat.

Most of us who live with a chronic illness like Parkinson’s disease know how hard is to get going in the am – especially when suddenly awoken from sleep. imagine being confused disoriented stiff unable to move with ease or move at all – I know all of you have struggled to get out of bed, get dressed, shower, brush your teeth or even take your medications first thing in the morning. At times I had been unable to dress myself without falling / feeling like a woman made of tin and unable to find the oil to save my life – you might even awake not knowing where you are or how you got there.

Some people may fall out of bed or fall with first step because of orthostatic hypotension but more commonly due to freezing episodes.  Some of you may even experience shuffling while walking bouncing from side to side of corridor with fear of falling, unable to open bottles to even take first dose of medicine in the morning.

Sound familiar?

If this happens every single morning, then we are dealing with am off episodes.

First, you must look at the time you take your last medication.

Second, what time do you awake in am? Do you wake up in middle of the night to go to the bathroom or some other reason? Can you move with ease at that time? Or are you having dyskenesias?

Third, what is your last medication? Is it long acting or short acting? Do you take anything else to make it last longer?

untrompo

For me, I began waking up extremely rigid but was also noticing that I was not moving in bed at night – normally stuck in one position which was causing my arm to go to sleep. I go to bed late and wake up early. So I increased my medication by taking a dose close to bed time but also made sure that this dose would last till I awoke the next day. Often times we treat am off by increasing bedtime dose and prolonging it with comtan, amantadine, dopamine agonist. I prefer a comt inhibitor it provides a smoother release. Now that 24 hour comt inhibitor (opicapone) available in some countries plus extended release amantadine (gocovri) we should be able to diminish these morning periods with greater ease. Another way of improving am wearing off is by taking apomorphine which will kick in fast and cover you until your first am oral dose kicks in.

The main point is documenting and paying close attention to how your medication is working to allow doctors to adjust your medications as needed. Caution, many of us have severe constipation which interferes with absorption of medication in the small intestines- what this does is delay onset of medication effect – NOT a wearing off!! Plus, the doses can accumulate giving you more side effects when it kicks in like greater nausea, vomiting, dizziness, hypotension, and/ or not control symptoms to the degree they are usually controlled (blunted affect with every dose).

so lets get moving again in the am by following these tips.

@copyright 2018

all rights reserved by Maria De Leon

 

 

 

End of life choices in Parkinson’s : bridging the disparity across cultures : by Dr. De León

At-the-end-of-life-what-really-matters

No where is being able to navigate living with a chronic progressive neurological disease more Important than in the ethnic communities. We as Latinos are far behind in not only getting prompt diagnosis and correct treatment due to financial, linguistic and cultural barriers but even when there is appropriate care, nearing the end of life can be one more hurdle for which many are ill prepared especially in deciding if and when a loved one can be placed in hospice.
Understanding the challenges of various ethnic and racial background could help us increase and improve the care of our loved ones when the end is near without leaving us emotionally, physically and financially bankrupt.
Among minorities there is still a lack of trust in traditional medicine. For some it dates back to studies like the Tuskegee syphilis study and the polio study in which minorities were infected with syphilis and polio concomitantly and allowed to progress without treatment even when penicillin treatment was made available to rest of world.
Among some of the concern Hispanics have in placing there loved ones in hospice ( a place for palliative care to ease pain and suffering in last days) is the fear that a loved ones spiritual needs will not be met. This could be quite distressing for instance if someone believes that they must be allowed to have a last confession before dying otherwise risk the possibility of eternal damnation. One of the things my grandmother enjoyed most while she lived her last months under the care of hospice was the weekly visit by a spiritual leader.
Another problem is that minorities like Hispanics typically like to make decisions in a more general manner in which everyone’s voice is heard as supposed to having a single person being the one making all end of life decisions for family and patient. Although, this is still a family preference we must understand the various culture barriers in order to provide optimal care. Getting a social worker involved helps to facilitate the interaction between the providers and the patients and family needs and wishes.
But, then there is also the stigma and guilt placed by society and culture particularly within the Hispanic communities of not taking care of loved one at home …we as Hispanics don’t put our elderly in nursing homes …doing so may indicate a sign of weakness as well a lack of love and respect. Traditionally, this type of behavior is frowned upon and can cause major psychological distress for caregivers and patients as well (for loved ones may be a feeling of abandonment accelerating depression, anxiety, and fueling resentment).
In order, to aid in finding the best care for end of life choices is first eliminating the guilt out of the equation by asking family to think of loved ones best interest and wishes. This means beginning the discussion early on in disease diagnosis with family and patient alike while the patient is still able to make informed consent and express his or her wishes. Once again, availing of the services of a social worker, counselor or spiritual leader can help ease the discussion process.
The other important thing is to discuss exactly what is meant by hospice and the expectations of all involved. For instance, depending on agency and to some degree the insurance provider patients may only be admitted if have terminal illness that will cease within a week, others a few months while some even provided care for years. Secondly, just as the requirements change from facility to facility for admission so do the locations where services can be provided such as hospital, nursing home, or home. My grandmother had hospice care at my home for the last 6 months which made it more comfortable for her, eliminated any guilt of placing grandma under hospice care, yet provided the medical support and palliative care she needed. In e she had he added benefit that I could tend to any immediate life threading infections and such while this may not be the case for some hospice facilities or agencies which only focus on pain and feeding. Others even allow patients to still visit their providers or vice versa allow physicians to visit them at home or at nursing home.
Finally, when determining who and where to use as end of life provider research to see if the staff are acquainted with a patients cultural needs. My family and I were lucky to find a hospice nurse which was Spanish speaking which made the care much more comfortable and eliminated my concerns regarding my grandmas ability to communicate any discomforts or problems to staff in my absence.
In the end making the tough choices of caring for a loved one until the very end depends and starts with an open communication between all parties involved patient, family and health are provider(s). Typically, I would schedule a separate office visit to discuss these issues specifically making sure we all had a clear goal in mind followed by contacting appropriate services to carry out patients and family wishes.
Discuss the wishes for end of life care through out the disease progression to ensure that the patients wishes are being carried out. Plus, by starting the conversation early you can avoid some of the heartache and guilt that usually comes about as our loved ones are nearing the end of their lives.
Remember end of life choices should NOT be made at the end of our life….
@Copy right 2018
All rights reserved by Maria De Leon MD

 

 

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

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

 

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

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

 

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