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, dbs treatment for tremors, disability in PD, dopamine and parkinsons, parkinson's disease, Parkinson's Health, Parkinson's symptoms

When Is a Tremor a Sign of Parkinson’s Disease?: By Dr. De Leon

Are you often asked by others, if you are nervous or cold?

Do you frequently hide your hands in your pockets when you walk to avoid stares from onlookers ? When you are out in public  do feel all eyes are on you and makes you shake more? So you stick your hand(s) in your pocket as fast as you can? Sometimes do you feel the urge to just sit on top of your hands until they go numb just to stop them from shaking for a minute or two?

If you do any of these things- it maybe your brain telling you something is not quite right! The problem can be something as simple as drinking too much caffeine (but usually will also feel tired and  have a fast heart rate) to as difficult as having a neurological disease affecting the cerebellum caused by alcoholism or poor nutrition.

The first step in finding out the problem is getting to a neurologist preferably a movement disorder specialist.  He or she can tell if the tremor is metabolic due to thyroid problems or neurological in origin. May sometimes require a few blood test and even an MRI of the Brain when other symptoms are present to confirm there are no other underlying causes.

The key in diagnosis is in the characteristic of the tremor at hand. Typically neurodegenerative  diseases like stroke, MS, PD tend to start on one side and remain unilateral for a time. While tremors due to metabolic issues and benign essential tremors (ET) are usually bilateral (present on both sides). Although, in ET these can have a more severe dominant side.

However, when at the tremors are at rest, this could be a sign or one of the initial symptoms of Parkinson’s disease (PD), a chronic progressive neurologic disorder caused by the deficiency of a chemical called dopamine. PD tremors present typically in the hands. Usually it manifests itself while at rest in the thumbs; but any of the fingers can shake resembling a rapid tap as if sending a Morse code message. This tremor is often more noticeable to others when sitting or walking.  It can sometimes less frequently present in the feet with an involuntary rhythmic toe movement, most frequently noticed at night while trying to fall asleep. Unlike the more common tremor known as essential tremor (ET) which occur primarily with action; by definition, a rest tremor disappears as soon as a deliberate movement or motion is made such as reaching for a cup. The rest tremor is also usually accompanied by decrease in arm swing in the  opposite arm- opposite arm usually stiffer/ tighter. sometimes only way some patients have noticed a decrease in arm swing is by  decrease ability to keep time in a Rolex watch – since they are self winding with gait and arm movement.

Another important characteristic to look at is penmanship. Handwriting is significantly affected with both types of tremors which can be equally frustrating for different reasons and can lead to illegible handwriting in individuals suffering from both types of tremor. As you know, the characteristic features of those with PD are small, tight and progressively diminutive hand writing (micrographia) rather than shaky. Both types of tremors can worsen with stress, lack of sleep, and caffeine intake. According to Dr. Okun, National Medical director for the National Parkinson’s  Foundation, evaluating a sample handwriting helped identify early PD in over 97% of the cases. 

Along with tremors patients with PD are stiff, thus have trouble performing normal activities (i.e. bathing and dressing) due to lack of mobility. They often complain of shoulder pain caused by stiffness in the joint. Another important finding is an inherent slowness when performing any type of movement (e.g. walking, eating, and opening doors and jars). Further, Parkinson’s patients have difficulty with gait and balance leading to frequent falls. Other symptoms accompanying tremors include loss of smell, visual deficits, fatigue, pain, sleep and mood disorders along with bowel and bladder difficulties. Sometimes the latter findings may precede the tremor itself by up to 10 years.

People with ET typically have problems with shaving, putting on make up, drinking out of a cup etc. These individuals usually present in their later years unless there is a family history which tends to be anticipatory in nature. Some of them may be heavy drinkers due to self medication confounding etiology of tremor. (Alcohol alleviates these types of tremors; however I do not recommended as the treatment of choice). This means that if grandma had ET at 80, children will have at least 10 years earlier and so on. Eventually gene will die out with each generation. Interestingly persons with essential tremors especially those who are older at presentation tend to have increased hearing loss. On the upside of things these individuals have great longevity. They too may experience tremors of voice, and trunk as well as legs making them unsteady to walk and in cases where tremors start young there is an increased risk of developing PD in later years.

If you or a loved one have any of these characteristic features especially if there is a family history of tremors or Parkinson’s disease, then you maybe one of the nearly 10 or  1.5 million people living with essential tremors or  PD respectably in the USA. Although at present there is no known cure for either disease and we arte not certain of the cause, there are many efficacious therapies for both including medications such as levodopa- the Gold standard of treatment for PD. Also surgeries like deep brain stimulation (DBS) can be of great benefit to either disease and thus far is the only treatment available able to stop tremors 100%.

So, if you or a loved one got some tremors after a well shaken chocolate martini (preferably), seek immediate care from a movement disorder specialist. Early treatment is associated with an increased quality of life and decreased disability particularly for PD.

Go ahead & shake it like there is no tomorrow!

For more information-

Www.pdf.org  PDF Helpline -1800-457-6676 Www.essentialtremor.org

 

 

 

chronic illness, disability in PD, drooling & swallowing, fluctuations in parkinsons, medications in Parkinson's, Parkinson's awereness, parkinson's disease, Parkinson's Health, Parkinson's symptoms, parkinson's treatments, parkinsons health and beauty tips

I am having trouble swallowing …could it be my Parkinson’s or something else? By Dr. De Leon

“The only time to eat diet food is while you’re waiting for the steak to cook.” Julia Child

 

As we start a New Year, thoughts of health and staying healthy seems to be one of the foremost concerns in most of our minds, at least they are for me. Most of us who have lived with PD for a while realize what a burden it can be especially in light of the fact that for the majority of us Parkinson’s is not the only disease we have or will ever have. Unfortunately, not only are we still at risk for developing other major illnesses as we age but PD itself being a systemic illness can in turn predisposes us to other diseases like various types of cancers, dementia, strokes, possible diabetes along with other gi problems. Thus, we must always be vigilant for any new symptoms. We must be savvy in recognizing these as well as knowing what to do when they do arise.

One of the best tips I can give you as a neurologist is to make sure that you have frequent follow up appointments with your MDS or neurologists especially if you have had PD for more than 5 years because sometimes we as patients are not very good at picking out subtle changes or worse when we do recognize there are changes we sometimes get afraid of the implications so we don’t bring it up and try to deal with it. You should see your physician upward of 4 times a year in my experience if you are more than 5 years certainly more than 10 years. Remember-Our body’s change as we change and so does our response to the medications.

Now that I am nearly 10 years into the disease I have noticed increased chocking and swallowing problems. When you choke on your own saliva –that is an attention grabber! The other day I choked while taking my potassium which resembles a “horse” pill. This nasty pill went down the wrong pipe, I was beginning to panic since it was stuck smack down the middle of my throat then I remember that the potassium pill dissolved quickly with water so even though I was chocking and gasping for air I was trying to drink water to dissolve pill. Of course it was making me panic more as I was really struggling to breathe…I thought is this how I die? Flash of a patient that asphyxiated eating a peanut butter sandwich passed quickly by…

I was not going to go down this way I was about to attempt a Heimlich maneuver when I began spewing and foaming the potassium out of my mouth in a violent cough. All because my PD meds had not kicked in before I took such large pill. This was too close for comfort, this meant time to adjust medications. In my case it was an easy solution but is not always straight forward.

If you are experiencing any amount of swallowing dysfunction even if mild does not have to be as violent or severe as mine to bring attention to the problem.

I am choking you and your doctor will both ponder if your PD has worsened?

Is it Parkinson’s or something else entirely?

First, you need to keep a record of the events:

  • When does it happen? Morning? Night? After medication intake or medication wears off?
  • Does it happen every day?
  • Does it happen with solids? Liquids? Or both?
  • Does it happen only with pill intake?
  • Do you cough? / wheeze?
  • Are there other symptoms with it like dizziness, unsteady gait?

Then you have to address:

  • Are meds not working? Are they wearing off? Need larger doses?
  • Do I have any other medical reasons for this? (strokes, gi problems, throat tumors)
  • Atypical PD?

Also if you had DBS implant you may have worsening of swallowing especially if already had some symptoms prior to surgery. sometimes adjustment of DBS can improve symptoms.

Fortunately, mine got corrected with adjustment of medications and addition of new med called RYTARY – intermediate release levodopa.

It is important to remember that even if there is aspiration things are not as black and white. I am glad that many other doctors and therapists are starting to take note of this fact. Food and being able to eat and enjoy it is a big part of our culture as well as our quality of life. Being able to taste and sit at the table makes us feel more like a normal person. So sometimes, even though a patient can’t swallow or is aspirating and requires a feeding tube –the family can work with the doctors and speech therapist top provide quality and comfort to their loved ones- may start with ice chips or food to taste like pudding, or a combination of being able to eat normal meals at certain times and use the peg tube at other times for pills or calorie sustenance.

  • Regardless of cause all patients with swallowing trouble, everyone should have an evaluation by a speech therapist which should include a modified barium swallow to make sure there is no aspiration in particular silent.
  • Your MDS/neurologist may refer you to get an ENT evaluation and/ or Gi evaluation to make sure there are no other treatable causes. They may also order MRI’s of brain or neck.
  • Usually swallowing difficulties in Parkinson’s may begin to occur after several years of illness usually >7 years, if having problems swallowing at the beginning or more pronounced and rapidly deteriorating is a big indicator that we are dealing with a more aggressive Parkinson’s plus type such as PSP, MSA, LBD etc.
  • These are all the questions that you and your doctor will need to address. You need to seek immediate attention if having difficulty swallowing in order to protect airway and prevent aspiration pneumonia which can lead to hospitalization and early demise.

 

Next time you feel stressed or that the passion and flair has gone out of your life because of PD, “Pull up a chair. Take a taste. Come join us. Life is so endlessly delicious.” (especially if you taste anything chocolaty!)
Ruth Reichl

 

 

 

 

cancer risk in parkinsons, chronic illness, disability in PD, parkinson's disease, parkinsons health and beauty tips, research in parkinson's disease

How To Make The Most Out of Your Neurology/MDS Visit: by Dr. De Leon

How To Make The Most Out of Your Neurology/MDS Visit: by Dr. De Leon.

chronic illness, disability in PD, parkinson's disease, parkinsons dementia, parkinsons health and beauty tips, research

How To Make The Most Out of Your Neurology/MDS Visit: by Dr. De Leon

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I know many of you have expressed the concern that some of the issues don’t get addressed or addressed in a timely manner when visiting your neurologist or MDS. This especially difficult to deal with since many do not live close to a neurologist and have to travel a way to go see them. So of course you are tired and frustrated of  having to wait both to see a neurologist or movement disorder specialist as well as in pain and discomfort if asked by your doctor to be off your medications for evaluation.

We all have experience the feeling of disgust at ourselves when after leaving the doctor’s office after being there several hours we realized that we forgot to ask or discuss an issue that was utterly important.

A few tips to minimize frustration and maximize our time and neurologists focus on our issues are the following recommendations based on my extensive experience as a Parkinson’s specialist and as a patient.

First, I am sure many of you have experienced the phenomena I like to call the ‘doctor syndrome.’ For some reason, it happens to me all the time and I am certain it happens to you because many of my patients told me that they were worst before coming to see me. I am not sure why that is but my Parkinson’s symptoms are always better when I see my doctor!

Second, especially if it’s the first visit make sure if possible to bring someone with you that can be your ears. Because unless you are savvy in the medical field and medical jargon, after the first few sentences where your doctor tells you the diagnosis I guarantee you will not remember anything else said or explained.

As physicians we usually concentrate on what’s visually in front of us and have to pay close attention to non visible symptoms and rely on you unfortunately too much to let us know how your life is being affected by these invisible otherwise known as non-motor symptoms.

Parkinson’s disease is extremely complex illness and increasingly getting more as we speak even though most neurologists and movement disorder specialist like me typically spend an hour or more per patient it is impossible to cover ALL possible symptoms in detail.

Therefore it is imperative that you prioritize your problems:

  1. Are you there as a new patient and looking for diagnosis and new treatment?
  2.  New patient for second opinion and alter treatment?
  3.  Established patient for management of symptoms?
  4.  Established or new looking for disability?
  5.  Interested in participating in studies or research and what are you willing to do?-e.g. participate in studies with new unknown meds vs. known medications already approved, invasive vs. non-invasive?

All of these will require different focus from your doctor.

I recommend that you limit your discussion to main reason (chief complaint-e.g. new patient looking for diagnosis) you are there and two other symptoms that need immediate addressing!

If you have more pressing issues make an appointment sooner than what they will suggest don’t settle for appointment in 3-6 months if NOT doing well!

Also if need a family intervention to discuss prognosis and long-term treatment plan and care, make appointment with you, family and doctor exclusively to discuss these issues. Let the doctor know ahead of time that this is purpose for visit so doctor and staff can be prepared for meeting as far as time so you won’t be rushed and also and most importantly so doctor can formulate plan ahead of time and bring ancillary services if needed such as social services or names of assisted living, nursing home, or rehabilitation places etc.

Third, know your insurance coverage of medications. This will expedite treatment and allow doctors to know which prescriptions to write. Unfortunately, due to recent changes in healthcare and medication coverage (at least in this country) it is becoming increasingly more common for doctors particularly specialists to prescribe medications base on a patient’s formulary rather than what they think should be first choice! Ask for samples, ask for assistant programs, and let them know if meds will require pre-authorization or paper work filled out. If you are new patient or established patient who will be on new drug- it is best to not have that medication sent to mail order pharmacies until required dose achieved and / or know if can tolerate otherwise will get stuck with a bunch of medicine can’t use.

Fourth, always bring a list of your medications better yet the medications themselves which should ALWAYS include name of over the counter medicines even if they are as needed because could possibly interact with new prescription.

Fifth, ask for side effects of new meds, what to expect, how fast will notice improvement, do they need to be titrated and how often? In this should also inquire if meds will affect women issues such as safe if planning to conceive or are breastfeeding, ask especially if risk of melanoma, breast cancer and prostate cancer in family to be referred to specialist for follow-up given that some medicines will increase these risk and others like melanoma simply by having PD make you at higher risk.

Finally, at least in this country know that if you require paperwork filled out there most likely be a fee and a few days to get paper back so plan ahead.

Ask for literature, support groups, as well as ancillary services such as speech therapy if needed.

If you follow these simple rules, I guarantee that you will have a much happier and successful journey with PD as you and your doctor work as a team.

*******

Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

chronic illness, disability in PD, parkinson's disease, parkinsons health and beauty tips

Tips on Getting Disability Benefits Efficiently & Effictively: by Dr De Leon

Getting Disability Benefits: Is It Always Necessary to Hire a Lawyer? Part I : By Dr De Leon.