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

chronic illness, dopamine and parkinsons, fluctuations in parkinsons, parkinson's disease

Anxiety in PD: by Dr. De Leon

cation

anti-anxiety pills, I would take them but I am afraid …”

Anxiety also thought of as excessive worrying is something that I have had lots of experience in dealing with as a physician and caregiver but until my medications were reduced after last hospitalization, I myself had never felt this way. I am not a fan.

As it turns out nearly 20% of people with pd experience these symptoms during the life of the disease. Fortunately, this is one of those symptoms which is extremely treatable since we have a slew of med. unfortunately, it is often misdiagnosed or overlooked causing severe mental and physical anguish.

We have recognized anxiety  as a non-motor symptom of PD not simply a reaction to having disease. As we learn more about Parkinson’s we realize that anxiety can be a presenting symptom and even precede motor signs and symptoms by many years.

There are several presentations of anxiety. The most common is  general anxiety where a person becomes overly concerned with things around him or her like when is the next doctor appointment, or lunch meeting. You may feel like passing out, have gloom and doom feelings, shortness of breath, heart palpitations, sweating, dizziness, chest pain, numbness and tingling or pins and needles. They may even cause spontaneous crying, vomiting, or difficulty swallowing ..tightness in throat.

I must say that this is the form most often encountered by me in my patients. however, i now know that I failed at times to treat the underlying cause. I recall a sweet older patient who began having ‘on’ and ‘off’ periods would over dose on Sinemet each time she had an ‘off’ period due to the severe anxiety only to aggravate her dyskenisias. Not really understanding that what she needed was more dopa medication more evenly spread out to stop the ‘off and assuming this was  unrelated to her dopamine levels I prescribed Ativan ( anti-anxiety medication) but quickly she began popping these pills like candy in some ways making her anxiety worse by severely compromising her respiration.  Until I had this similar problem several months ago, I did not fully comprehend the severity of the problem, the incredibly overwhelming feeling of lack of control and feeling of being consumed by this emotion as well. I understand how people that take drugs are constantly after a next “fix.” You simply want to feel normal or at least that feeling of lack of control, and complete incapacitating nervousness to cease.

Since, I was placed on a much lower medication dosage than I was used to, the lower doses were not lasting as I was used to without feeling gaps. Now, I was experiencing on and off symptoms and found myself completely absorbed in my day to simply waiting for the next dose. This was completely foreign to me in the decade I have had pd I have never had to set my watch by my meds. Because I am well controlled and have several long acting meds, I don’t feel the gaps and certainly don’t go into panic mode if I am a bit late taking medicine or forget. I do however, get stiff, slower and stat having pain or visual problems if I forget completely. Yet, here I was like a drug addict counting hours and constantly looking at the clock to see if it was time to take my next pill. No way to live!

So, I decided to deal with the side effects of my meds from a different angle and stop this madness which lasted less than two weeks but felt like an eternity. I restarted my medications at previous doses and voila! No more anxiety. I could breath again normally and actually be productive once more. This of course, thought me a huge lesson, realizing that in my practice as well as many patients out there that complain of anxiety or difficulty breathing are actually undermedicated. They don’t need anti anxiety meds they simply need higher doses of dopa that is continuous and not fluctuating.

This is because the symptoms are extensive and can mimic many other illnesses including, thyroid disease, low blood sugar, heart attack, and asthma doctors may want to do other tests to rule out these more serious and potentially lethal diseases. However, the best way to properly diagnose and get the right treatment is to maintain a diary.

  • When symptoms start?
  • Are they Daily?
  • How long they last?
  • Do they occur multiple times a day ?
  • Are they following or preceding  medication intake? Food in take ?
  • Activity bring on?

Treatments:

Once source correctly identified a new regimen can be implemented. In most cases of anxiety in people with Parkinson’s are due to under medication in my experience – thus the solution is to increase levels of L- dopa either more frequent dosing, larger doses or both.

However, once all other possible causes are ruled out and not improving with higher dopa levels, anti -anxiety meds in the benzodiazepine class are implemented (e.g. Ativan or klonopin).  Also Ssri’s  anti-depressants like lexapro, Zoloft, or SnRI’s such as Effexor, Cymbalta, or Remeron can be prescribed. Even behavioral therapy might be considered if symptoms are not subsiding along with  antipsychotics preferably those like  Seroquel, Clozaril maybe given without worsening PD;  perhaps  even the new drug Nuplazid could be instituted although no data available at present time.

Don’t suffer in silence get help if you are having anxiety particularly if altering your life style or causing severe physical and emotional impediments. fortunately, I am back to myself not looking at watch every 5 minutes waiting to take next dose…so that I could regain some temporary sanity.

More info:

http://www.pdf.org/anxiety