Tag: health

parkinson's disease, Parkinson's Health

Stem cell therapy in Parkinson’s disease: Promising treatment or Hoax? By Dr. De León

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Given the fact that living with a chronic neurological disease like Parkinson’s for which there is no cure can make any of us in a moment of desperation turn to any form of treatments and therapies which promise a cure. I have recently noted an increase of talk about this subject on social media in our PD community. Unfortunately, many good people have been bamboozled into believing the hype on social media about stem cell therapy as a cure all! The people offering stem cell therapy as a cure have prayed upon the fears, and suffering of many in our community. However, it is important for me to outline the facts and discard the myths surrounding these so called new therapies that promise so much.

Let’s first look at what are stem cells and why are we so interested in stem cells as a possible treatment for Parkinson’s disease.

• They can continue to divide for a long time
• Unspecialized
• Can give rise to specialized cells

Back in the 1980’s, there were trials in which fetal dopaminergic neurons were transplanted into the brain of some patients some of who had long lasting effects. It was then proposed that in vitro dopamine cells derived from cells derived from embryonic cells and bone marrow could be harvested to produce same effect. However, as of today, there has been no evidence that in vitro cells injected/transplanted in to animals with experimental PD can then re-innervate the striatum with dopamine neurons in vivo and give rise to a considerable improvement and recovery from deficits resembling human Parkinson’s symptoms. Furthermore, in order for the recovery to be effective one must have a large quantities of dopamine neurons which has not been feasible due to extremely short survival after transplantation.
Since, there is still so much we don’t know about this extremely complex disease, finding ways to modify it has proven to be a daunting task. Nevertheless, back at the beginning of this decade there was a small study with stem cells which showed some modicum of promise. This study used adult stem cells (these can be obtain from same person -autologous or another individual-allogenic). Both have their advantages and disadvantages.

Types of cells
• Embryonic- An embryonic stem cell is one that can differentiate into any cell type of the body this is known as pluripotent these then give rise to multipotent stem cells which can the. Differentiate into specialized terminal cells e.g. nervous system giving rise to different type of neurons
• Adult …they do not regenerate as well and if place in different environment these may or may not develop that areas specialized cells which means these cells have to be placed in basal ganglia to even have a chance …
• Umbilical
• Hematopoietic

Studies involving stem cells have included embryonic cells and placed into brain via olfactory nerve tract
The main problem is that most of the people claiming to have the “cure” using stem cells are using adult stem cells from the skin which remain as skin cells especially since they are given back as an intramuscular injection. Many times these develop into scar tissue or lipomas (fat tumors)causing other problems. It is also important to note that when receiving cells from another individual these must be matched for ABO blood type, Rho factors as well as gender. If implanted outside of the nervous system having a mismatch can result in antibody production as well as decrease in longevity of cells. However, if implanted in the nervous system because of blood brain barrier this is not an issue necessarily. However, the effects of this is not known as of yet because the nervous system also possess cells like macrophages and glia which are the brains immune system which can potentially attack these new cells.

In the study, I mention previously autologous totipotent stem cells were used.
These cells are capable of differentiating into any cell and give rise to an entire human organism. The cells were uncommitted to a particular cell type when used therefore potentially much more likely to develop neurons if placed in nervous system. The reason autologous cells are preferred as I mentioned before we would eliminate the need for autoimmune suppressants necessary in all transplantations when foreign cells used.

Remember not all stem cells are alike…although stem cell research is actively evolving and is currently a very dynamic field. Scientists have discovered that hematopoietic cells can be harnessed to develop into nerve cells. These types of cells have already been used to treat other medical problems. However, cells have to be extracted from bone marrow (-autologous). Plus it need the right location …into the striatum of the brain. Placing outside of basal ganglia will NOt produce the appropriate dopamine producing neurons even if placed in the brain much less if placed outside of the central nervous system. Things like temporal lobe epilepsy could potentially result if cells are placed at random in the brain causing migration to other parts of the brain.

In conclusion, what we want is autologous adult totipotent stem cells not embryonic or fetal to be placed inside the brain cavity meeting all these requirements makes for a higher likelihood of success although yet to be proven. Unless, you are participating in a trial meeting these parameters then you are allowing yourself to be part of sham therapies which on top of being extremely expensive could be deleterious to your own health. Fortunately, because of so many scammers, the FDA recently announced back in march of this year that the “wild west of stem cell therapies” is coming to an end with the introduction of a new frame work and guidelines due to the national and international pandemic of providing treatment which are not only ineffective and costly but also proven harmful. I for one could not be happier about this! People need to be held accountable for their careless actions.

As an aside: An autologous bone marrow adult totipotent stem cell study is currently taking place at UT Houston under Dr. Mya Schiess- The coordinator number to get more information can be reached at 18326329 to see if you qualify.

Copyright@2018
All rights reserved by Maria De Leon

Sources:

Lindvall O., Kokaia Z. Stem cells for the treatment of neurological disorder. Nature June 29, 2006 Vol. 441

Click to access treating-parkinson-disease-with-adult-stem-cells-2329-6895.1000121.pdf


Is the wild west of stem cell therapies coming to an end? American council on science and health http://acsh.org/news/2017/11/17/

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

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

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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, Parkinson's Health

Parkinson’s through time: by Dr. De León

defeatparkinsons

“LIFE GOES ON…”

Hello my friends!  Happy Valentine’s Day to all my friends around the world!

As always, I appreciate each and everyone of you and thank you all for allowing me to be part of your PD journey either as a person with disease, caregiver, friend, spouse, partner, child, grandchild.

These last few weeks, I have been having a closer more personal intimate look at my old friend.  Aside from having new exciting PD projects in the works ( another women’s book in the making among other things);nevertheless, my biggest challenge is adjusting myself to a new stage in my life. Not only will I be celebrating very special wedding anniversary and 50th birthday this year but my Parkinson’s is slowly inching its way into a more moderate stage. Perhaps is not so much that my Parkinson’s symptoms have gotten   more drastic or severe, although I experience some wearing of more frequently than before in the form of dystonia. One of the reasons for which writing this blog has become more challenging. It is difficult to type and difficult to speak, so i rest my arm and voice like the famous opera singers and world class pitchers til is absolutely necessary to exert myself. besides waiting to try long acting drugs like 24 hour Opicapone ( comtan inhibitor) or extended delivery Goccovri ( extended amantadine)- I have had to resort to OT for construction of braces and scheduling ST to improve hypohonia because more and more my family is asking me to repeat myself or telling me that I never said anything which can drive someone mad. perhaps time for another round of botox in the works….but not till this bronchitis clears!

Further,  with all these changes compounded with increasing age and disease progression, the use of multiple medications and multi-system involvement of PD is beginning to cause cautionary breaks, problems, concerns on my part, my family and of course starting to get many more puzzled looks from specialists as they try to offer me the best care possible given my long list of systemic complications and drug -drug interactions. This is precisely why I always recommend having a very close relationship with your MDS and more frequent visits to adjust the sails for the change in course. we can all get away with taking minimal doses at the beginning and not see a doctor  perhaps once a year; but as we advance that time between visits  gradually needs to shorten in order to ensure you are receiving the best care.

First stage of PD, biggest problem to over come is getting right diagnosis, dealing with consequences of diagnosis followed by learning to live successfully with new disease as we find the right medicine cocktail with least side effects and maximum efficacy. Not an easy feat which may take a number of years, lots of tears, frustration and redefining boundaries with ourselves and every relationship thereof.

Second stage, I am beginning to realize more and more why-my Parkinson’s patients and many other people with illness suffer from increased isolation and depression due to only having so much time and energy. thus,  if we are not cautious we can easily over extend ourselves and become emotionally and physically exhausted. I swear I have never spend more time as a recluse as I seem to be more often these days.  I don’t want to go out, get dressed and put up a happy face when I feel miserable inside from pain, fatigue, and constant coughing . Bu,t i like to think that me taking this necessary time for myself will allow me to heal faster physically as i recharge my batteries but make a very concerted effort to not give in to illness nor seclude myself completely. One way i maintain my mental sanity and avoid feeling emotionally lonely, sad, or depressed is through use of technology.  I still do conferences via skype and communicate with friends via internet and go out when someone is able to drive me or the second i feel energized. It is extremely important that we redefine our goals at every stage, reevaluate or medications and also our support system. as our bodies change so does the effect of medicines. on average the dopamine medicines usually stop working at maximum capacity around 10 years- so I too am thinking of taking a bit of holiday but within 3-6 months they can be reintroduced and be good as new. with age our livers don’t function as well nor our kidneys compound this with beau coup medicines and our livers begin to have a harder time clearing things which can increase the side effects. Don’t assume that because you have been taking something for a long time without problems it will continue its same course. Simplify, Simplify!!  Always always look at possible interactions particularly those that may cause more trouble .

With each passing day, I gain further insight and greater appreciation for those living with chronic illnesses and have a new found respect for my own patients. i empathize with those who frequently rescheduled. when you become chronically ill when we are in need of a physician the most we are often not able to go because we cant drive ourselves or dress ourselves cant sit for a long time etc. So we either don’t go or go to ER. I have cancelled appointments more times than I care to admit. I too am working on a strategy to make sure that when I have appointments I find a friend, relative, or my husband to take me and not be so concerned about my appearance in public for that moment or be concerned that you are needing to ask for help. Really doctors don’t care what you look like especially if you are ill they understand! Plus, your friends, family and loved ones want to help they just don’t know how unless you ask. yesterday when my husband accompanied me to see the specialist i had a revelation. I was portraying my own feelings of inadequacy and insecurities on him thinking that he was somehow bothered by having to take me and care of me. Since i have always been independent. but turns out he said after i thanked him for taking time to be with me, ” i like taking care of you and would do more often expect you don’t allow me.” so don’t isolate yourself thinking you are alone in this journey or have no support because all those who love you and care for you will step up if given the chance.

You can do this.. life is but a continual dance sometimes fast sometimes slow but as long as you keep dancing you will always have fun.

@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

defeatparkinsons

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

 

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

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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 “natural” DOES 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

defeatparkinsons

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

 

 

caregivers and chronic illness, chronic illness, Dealing with Grief/ loss in PD, parkinson's awareness month, parkinson's disease

Dealing with end stage Parkinson’s disease- the long goodbye: By Dr. De Leon

defeatparkinsons

“..Before the prospect of living less than everyone else, I have decided to live faster, more fully…” Alexander Dumas – la dame aux Camilles

 

Lately, I have been thinking about this subject quite a bit especially since one of my dearest friends has been diagnosed with terminal disease. For the first time this in my life, I have found myself to be at a loss for words. This is saying a lot for aside from being a physician who has delivered bad news a thousands of times, I have also cared for many loved ones with terminal illness. I think the reason I am having such inner turmoil is because she is my own age with a child who is my daughter’s age aside from being one of my best friends. I am not ready to let go. Especially since only two weeks prior to her diagnosis we had made so many wonderful plans. Of course visiting her at MD Anderson also conjured up a whole host of emotions. The smell and place reminded me of my first patient in this same hospital I had to pronounce dead in front of her family while I was an intern. What made it so difficult at the time was the fact that not only was she Hispanic but died of melanoma which runs in my family plus she was my very own age at the time 26.  My heart breaks even now remembering her and then thinking of my friend.

This situation made me think of everyone dealing with family members and patients themselves who are terminal. How do we deal with them? What do we say? How do we treat them?Image result for image of terminal illness

As far as Parkinson’s is concerned not much literature is available on the subject as some of you have inquired from me recently.

I decided to write some points on the subject. Although Parkinson’s is no longer considered a terminal illness as it was once 30 years ago. The new advents in treatments have greatly improved our quality of life yet; in many parts of the world where medicines are harder to come by it may still be considered a death sentence. Nevertheless, in most cases PD is a long goodbye. Subsequently, we are forced to learn to “live with death” in our lives for an extended period of time. Thus, the ways we deal with death and terminal illness in our society have changed dramatically since a great deal of people live with chronic progressive neurodegenerative illnesses. Unlike the cases when patient died suddenly – the patient him or herself also have to learn to grieve while still alive and fighting to hold on. This can cause a lot of stress in the family particularly because grief is a family matter.

Dealing with our own loss can be difficult enough as I am finding out. Moreover, thinking on how to comfort those experiencing grief first hand can be that much more daunting.

First, for the caregiver.

You might be experiencing trepidation in how to proceed with the relationship once a loved one has entered the end of stage of the disease. Try to remember that your loved one is still the same person even when they have dementia and can no longer communicate. Underneath they still are the ones you love. If they are still lucid try to focus your relationship on one another rather than on the disease. Don’t focus on unsolved issues. Focusing or bringing up these to light is not going to help the relationship any rather make it more challenging. Don’t underestimate the power of your presence. But never try to be a counselor. Be a listener only.

Secondly, the other thing I learned through the years but especially while taking care of my dad. Dyeing is NOT a science. There is no time frame nor right or wrong way to die. I so wanted my dad to talk about his life, what he liked and did not like. Plus wanted any advice, pearls of wisdom he could share with me; but he never could do this for me. I suppose it was too painful for him to express and I too incentive to his feelings being selfish wanting to know more about his life before he passed.

When it comes to dying, some people accept it and come to terms while others may choose to live in denial. Allow them the freedom to choose. Plus denial is a natural self-preservation mechanism because the alternative is too frightening to cope with. As long as the denial is not causing harm it should not be contested. They might be afraid of letting family down, losing control of independence, bodily function etc. Offer spiritual support but as I found out with my loved ones sometimes it is easier for them to seek support outside of the family. Offer to have spiritual counselors come by regularly like ministers, priest etc. My grandma really enjoyed this time even my dad to a certain degree especially when other congregational members came to sing.

Should we keep vigil by their side when time draws near? Get your cues from your loved one. Ask what their desires are. Being near a loved one as they are dying although painful can be a very beautiful sacred experience increasing your inner strength, even though at the time you may feel helpless and powerless. It also allows you to give your loved one permission to die if you sense resistance on their part because something seems to be holding them back. For instance, when my dad was in his last breaths (agonal state) I could sense his hesitation to let go because he was worried about mom. I told him it was ‘ok’ to let go. I emphasized the fact that we loved him very much and would see him soon and that mom was going to be fine with us. He passed away that evening.

But keeping vigil can be emotionally and physically exhausting.

Remember to take care of yourself as well. Take breaks and don’t forget to eat and drink fluids. You don’t want to end up in hospital yourself. You may choose to have love one die at home, hospital, hospice or nursing home. You and loved one should decide ahead of time. Both my dad and grandma wanted to die at home.

Third, is ok to allow yourself to grieve which usually comes in waves of emotions. Sometimes you may start grieving as soon as the end draws near other times may not occur till much later after their passing.

Guilt is a normal real part of grieving. I also experienced feelings of guilt after my grandmother’s passing, questioning if I had done enough. I would second guess my decisions wondering if she might have lived longer if I had kept her under my care the last couple of weeks. Remember that these feelings too shall pass. If the grief or the guilt is not seeming to go away make sure you avail yourself of a professional grief expert to help you heal.

So my advice is:

  • Laugh often
  • Really listen
  • Try to keep life as normal as possible
  • Provide genuine support
  • Make a wish list
  • Help maintain their dignity
  • Provide physical contact as much as possible
  • ask for specific needs which might require assistance

#Unite for Parkinson’s this coming month of April!pdftulip

 

sources:

http://www.nhs.uk/Planners/end-of-life-care/Pages/coping-with-a-terminal-illness.aspx

http://www.hospicenet.org/html/help_yourself.html

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

Anxiety in PD: by Dr. De Leon

defeatparkinsons

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