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

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

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

 

 

Importance of sleep in dealing with both motor & non-motor symptoms: By Dr. De Leon

“The future is shaped by our dreams so what are you waiting for and go to bed… START DREAMING!”

We have known for years that sleep is essential for our brains to function adequately. We  also know that people with Parkinson’s have a very disruptive sleep wake cycle for many reasons, the primary being a disruption in sleep wake cycle which is mediated by serotonin. Many of you like me sleep only a few hours every  48-72 hours.  This way of living is not only detrimental to our physical, emotional, and mental health; but actually as I have recently concluded, poor sleep architecture is one of the main if NOT the MAIN reason why we as individulas with chronic illness like PD feel so poorly. Perhaps even contributing to our eventual demise.

First, sleep is a way for our brains to encoding information into long term storage as well as discard the waste accumulated. This process needs to be done routinely otherwise trash accumulates and eventually can take over impeding the brains normal flow. this is a kin to not washing dishes day after day letting them accumulate in the sink and kitchen area, pretty soon you will run out of storage space, deal with toxic odors, over growing mold/bacteria, impede the flow of your cooking area and have no dishes left to cook or eat with. the constant tidying up keeps things not only neat but flowing and functioning at maximum capacity, likewise our brains.

Second, during sleep we strengthen/ boost our body’s immune system. This is important information considering new theory of PD that disease begins with the gut possibly by over wrought harmful bacteria which then makes its  way to the brain. weakened immune system  from poor sleep could also explain why people with PD are more suseptible to even minor infections like the common cold. I should know, I had about 6 months of down time due to upper respiratory infections.

I certainly, have become much more sickly since diagnosed with PD.

Third, sleep problems especially chronic insomnia can lead to changes in mood such as depression along with increased anxiety as well as decreased coping mechanisms for dealing with stress leading to increase irritability.

Fourth, sleep deprivation also causes widespread pain in joints and muscles by increasing inflammation. the constant pain imposed on our sensory system causes a centralization of pain making our brains much more sensitive to even the slightest discomfort. After all the brain cannot distinguish between physical and emotional pain. interesting thing, I can always tell my body not had enough sleep/ rest if my joints hurt, have swelling in hands, and stiffness of joints and muscles. I can almost feel the inflammation and pain of dystonia melting away as I sleep – the throbbing, aching pain in my arm which occurs with repeated use slowly vanishes with sleep.

Intuitively, I suppose that by ensuring best sleep practices via various medications and life style changes my patients overall did not seem to progress or have as many non -motor symptoms. the funny part was that I had been suffering like many of you with sleep deprivation which always made all my other symptoms worse ’til it dawn on me; why am I not taking sleep aids I used to prescribe for my patients?

I began taking one of my most commonly prescribed medications for sleep – in my case Lunesta and voila not only did I sleep well without being groggy the next day but having a constant refreshing sleep has allowed me to improve my quality of life dramatically. Once again, I feel energized both mentally and physically.

I think that we need to focus more on trying to regulate our sleep by whatever means possible in order to improve our quality of life and protect our brains from slow deterioration.

Sleep meds I often used in my patients which worked well and caused little to no daytime sedation nor interfered with other PD meds or symptoms.

  • Lunesta : (I like because it has multiple dosages 1mg, 2mg, and 3mg- plus does not typically cause sleep walking or other such bizarre behaviors like Ambien. Plus it does not build tolerance quickly safe to use on a daily basis).
  • Sonata: also very mild- much milder than Lunesta so I preferred to use in elderly patients.
  • Restoril
  • halcion
  • remeron ( which has added benefit of helping with tremors)
  • doxepin
  • elavil ( not goo din elderly because can worsen low blood pressure and memory loss, on the other hand it can help depression if present while aiding sleep)
  • melatonin ( otc)
  • klonopin ( great for tremors and dystonia but can cause short term memory loss if take chronically)

if you are still struggling with sleep issues talk to your physician today.

Pleasanr dreams everyone!

@copyright2018

all rights reserved by Maria De Leon MD

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

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

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

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

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

Now, within this realm of CAM we have treatments like

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

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

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

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

thanks

 

 

 

 

Tips for Good Sleep in PD; by Dr. De Leon

‘A Well Spent Day brings happy sleep.’

We all know that sleep is vital for our health; but how to reconcile this knowledge with how our illnesses make us feel ?

There I was last night falling asleep at 10 pm but unable to go to bed as I desired; since I suddenly began experiencing severe heartburn after taking my last dose of pills of the evening. So instead of finding rest in my own bed had to search for meds to relieve awful pain in my belly and throat which felt as if I open my mouth fire would surely come out. After taking several medications to ease the burning pain and drinking mint tea and passing the floor for at least a couple of hours my fiery pain was finally easing and although I was quickly becoming more alert through the whole ordeal I was eagerly anticipating a good nights rest after the last two weeks events which had maintained me extremely occupied and unable to sleep much. and then as many of you who live with a chronic illness in their life can relate as soon as one problem eases another pops up.

Sure enough after showering putting on my pj’s  relieved my belly pain was FINALLY subsiding for me to be able to recline, a new pain set in. This one was of course a real pain in my derriere literally and figuratively! Now my hip was in deep throbbing pain for no good reason other than to interrupt my sleep. The pain which was centralized in my ischial tuberosity  ( the siting bones of our pelvis) was worst with laying down- surely there was a low pressure storm brewing somewhere in my vicinity. More muscle relaxants needed along with stretching exercises and a deep massage to the area along with more pacing until pain began to ease around 2 a.m.

 As you can see and know from personal experience – getting a good night sleep has multiple layers of complexity. In order to understand our problem and how to achieve better rest in order to delay cognitive decline, diabetes, heart disease among many other problems caused by poor sleep not to mention increase pain, fatigue, stiffness and increased depression, we have to look at the many facets blocking of what should be a non-challenging natural occurrence.

First, we have to understand that as we age our own circadian rhythms undergo natural changes. Hence, teenagers can sleep till noon while elderly people usually arise very early in the wee hours of the morning. More importantly is the fact that for those of us who suffer neurological illnesses such as PD or Alzheimer’s, our internal clocks can become completely unable to function and become disconnected. This disruption is what causes us to get confused and invert our sleep wake cycles- sleeping all day and up all night. We need to avoid this pattern because the disruption leads to accumulation of amyloid plaques hallmark of Alzheimer’s.  In end stage Alzheimer’s and in PD people rarely sleep for long periods of time , rather they dose off and on all throughout day and night making the propensity for confusion, hallucinations, and psychosis that much worse.

The way to prevent and combat this natural tendency to shift our sleep caused by our disease is to make every attempt to reset our inner clocks. This takes a continuous effort on our parts. ( see ‘8 top sleep habits’– bit.ly/NN-SleepTips) experts have suggested that although maintaining a routine of bed time, the most important factor is Keeping a routine of awaking at the same time each day. This is I believe one of the biggest challenge’s we face. certainly for me. It’s easy during school days since I have to take my child to school however, it goes out the window during breaks and weekends. One way to help is making sure that the room you sleep ion is very dark at night but light comes in in the am. if unable to get light in, sleep experts recommend the use of a light box.

In order to improve night time sleepiness is….

  • taking sleep medications which I do frequently- the best thing I have found to help and prevent tolerance hence decrease effectiveness from developing is alternating meds or taking one type several times a week rather than daily.
  • increasing physical activity during day time – better if early morning. do not want to exercise late because it will only stimulate you and keep you awake. even if you are in the hospital- get up if able to and walk in the hallways several times. or do tai-chi if wheelchair bound.
  • get rid of distractions– i.e. TV’s, iPad, iPhones etc. from your room.
  • try to get natural daylight everyday for at least 30 minutes- open the blinds of your house, room, or go sit outside, better yet walk outdoors.
  • avoid alcoholic and caffeinated drinks in the evening.Image result for can't sleep funny images
  • keep room cool and quiet.
  • take melatonin.
  • make sure bed is comfortable for you. May need to get a memory foam  etc.

Second, another common obstacle is pain, stiffness, discomfort- as I experienced last night. Pain is usually worst at night, experts says  because of lack of outside stimulation to distract us from our pain. Sleep deprivation can cause a vicious cycle  i.e. more pain hence less sleep.

  • What we do is be able to have treatments available to counteract or avoid completely if its something that happens routinely.
  • Talk to doctor about pain meds – avoid narcotics if at all possible- prefer muscle relaxants like klonopin, baclofen, tizanidine and even anti-inflammatories
  • increase dopamine meds
  • stretch/ not exercise- frequently during the day and in the evening before bedtime. that was my problem yesterday, I forgot to stretch as often as I usually do and spent too long sitting hence the resulting pain.
  • some of the pain can come in form of restless legs- again talk to doctor to adjust medications- perhaps longer acting dopamine agent like Neupro patch or Rytary will do trick.

Third, other medical problems or non-motor problems…

  • increase urgency and frequency or urge to urinate– talk to doctor about medications for this; keep diary as to cause. Treat urine infections and decrease fluid intake after 8 pm. Rule out prostate problems or enlarged uterus or other female problems as the cause.
  • bed wetting– get alarm for bed; wear adult undergarments, get medications , make sure not diabetic, and make sure constipation controlled. find cause – is it because they cant get out of bed? get bed side commode; or because can’t get out of clothes – find clothes with Velcro, magnets, snaps etc./ to make it easier. cant get out of bed? change sheets to satin, increase dopamine meds to improve mobility and or prescribe meds to decrease urgency and frequency like Detrol, vesicare, myrbetriq.
  • sleep apnea common in older men but also more common in people with MSA- use bi-pap or c-pap- these machines are a lot smaller, talk to Ent specialist may be able to do surgery to correct.
  • Rem Behavior– increase dopamine meds, use melatonin, don’t take dopamine agents so close to bed time give at least 1-2 hours.
  • if having reflux like me – take antacids, ppi’s ( protein pump inhibitors) like Zantac or my favorite is Carafate liquid or pill before each meal and at bed time. Avoid spicy foods, caffeinated foods and alcohol and realize that antibiotics usually can deplete flora making heart burn more intense as it did me. talk to gi doctor make sure don’t have infection with H. pylori which can also affect absorption of medications rendering them less effective. easily treated with antibiotics.
  • try to take as few medications as possible and fewer times as possible to control symptoms- fortunately we have so many new options that we can use intermediate and extended release and patches which can greatly decrease number of times we need to take meds because not only having a neurological problem makes us more sensitive to side effects especially in us women but the more meds we take the higher the interactions and higher possibility of side effects. In my opinion, long are the days where we had to treat patients with medications every hour to 2 hours around the clock because of all the advances. So if you find yourself in this pattern talk to your doctor about other choices e.g. dbs surgery, duopa  pump, neupro patches, addition of Comt inhibitors like comtan/tasmar.  Fortunately we should soon have hopefully within the next year a 24 hour Comt inhibitor (Opicapone), etc.
  • neuropathies- address the cause and treat. Is it related to PD or B12 deficiency or diabetes ?

In conclusion, you have gathered already that proper sleep hygiene takes work and effort and that one fix does not fit all and even for same individual as disease progresses there are many factors involved which have to be addressed by you and your physician. Don’t be embarrassed to discuss or ignore. Adjust both your medications and life style to accommodate for these changes. May also require a stimulant during daytime to maintain sleep wake cycle which I often prescribed to my patients in conjunction with sleep aids. All in an effort to try to maintain a “normal” sleep wake cycle.

As I finish typing this blog, I have already taken my sleep aid so when I am done I will be ready for bed sensing sleep beginning to hit me before I get second wind and I am up all night again; which I could easily do and my body prefers. However, from experience as patient, doctor, and caregiver the next 24 hours will be mostly unproductive and exhibit poor concentration skills and decrease multi-tasking abilities. I certainly don’t need this nor do you since we all have responsibilities to attend to.

This week make time to start looking at your sleep habits closely and identify the problem areas then talk to your doctor to help find the right treatment for you. plus remember that your disruptive sleep patterns not only impact you but your bed partner as well who may become as sleep deprived as you from constant commotion in middle of the night.

Happy Sleep everyone……

  • More info go to bit.ly/NN-REMSleepDisorder
  • Source: Cohen, Marisa. “sleep Matters.” (April/May 2016) Neurology Now 45-49.
  • copyright-2017
  • All rights reserved- Maria De Leon MD

 

Raising PD awareness ONE shuffling Step at a time. : By Dr. De Leon

As we approach a New Year, I am more determined than ever to continue the fight against Parkinson’s disease both on a personal level as well as a collective effort. As a physician, and patient I have been privy to many extraordinary advances in the understanding of this complex illness over the last decade. However, 2016 saw rise of a new movement towards better understanding the differences among us all (those of us with Parkinson’s), in an attempt to try to find a unifying link that will lead us one step closer to a cure- if not for all perhaps for a number of  distinct subtypes (e.g. LRKK2). There is the large PD study being supported in part by the PDF which aims to unveil different genetic information causing Parkinson’s disease among various ethnic populations (particularly looking at Hispanics with PD).

We also have begun to recognize the importance of gender in the presentation and I believe soon we will also realize that age also plays a factor adding another piece to the puzzle. We have learned that non-motor symptoms are just as/or more important to recognize and treat because not only do they start 10-15 years before motor symptoms; but also can often be the major cause of disability and decreased quality of life. we got several new formulations of old drugs e.g. Rytary and are anxiously awaiting new ones to come out like inhaled levodopa (Accorda) and sublingual Apo morphine.  We saw strengthening of the commitment for a cure as organizations merged (NPF & PDF; MJfox & PAN). We mourned the loss of one of the greatest, Muhammad Ali, who is as much a hero outside as inside of the boxing ring- although, his legacy of courage under fire will live on.

Yet, I am afraid that we have just begun to scratch the surface of one of the most intricate neurological diseases known. One way in which we can continue to peel the layers is by raising awareness nationally as well as globally. The world Parkinson’s congress held this year in Portland brought more diversity than years past helping to disseminate information at a faster rate. We have to take advantage of the fact that the biggest sources of information in any disease especially neurological diseases is not from any doctor’s office but rather from other patients like ourselves. This is especially true in the Hispanic community. So, in order to ensure that accurate information is disseminated is for all of us to share the knowledge we possess with people in the health sciences and healthcare fields and begin an open communication to begin filling in the gaps both sides have. Only when you merge the knowledge can we have effective advocacy to disseminate sound information that will truly elevate and help live a more productive, healthier, happier life despite PD. In the absence of this we will continue to have discrepancies in diagnosis which is only harmful to us the patients and our families.

In light of this, how do we then begin to raise awareness along with the standard of care for the families and nearly 10 million people who live with Parkinson’s worldwide?

I would say that the seed to help others understand the in’s and out’s of PD starts with self-love. First, we need to accept our diagnosis not really liking it but just as another life experience from which we can learn and grow from. Don’t get me wrong just because I have accepted living with PD does not mean I am not doing my best to kick its hinny, or that I don’t get worried or frustrated about being forgetful, unable to multi-task, care for my daughter at times, or even practice my beloved profession. However, by owning our disease we can then become an asset to others who come after us, as I have attempted to do over the past few years. Not only can we educate each other and to our physicians by opening up about the things that embarrassing, frustrating, down right infuriating at times, as well as the things that matter most to us in life and in battling this illness, leaving aside the shame which only serves in my experience to make life more difficult.

However, I understand that sometimes we are best able to start the conversations of salient matters in a more intimate setting like a support group. As many of you know from personal experience, support groups are the veins of the vine, the life line to living well with PD and bringing insight back to the health care professionals and vice versa.

Yet, the reality is that not everyone has access to a support group because of distance, economics, place of residence, etc.  Thus, how does one have access to this? Of course there is always social media which can bridge any socio-economic or distance. Another option is starting your own group if you prefer something more intimate, personal and face to face which affords the benefit of having closer people in the same community to lean on when times get tough, because we all know it takes a village to make PD work for us.

Few tips to finding and starting a support group:

First, find one where you feel loved, comfortable, and free to be yourself …where your needs will be addressed, in social media or in your community or both. These groups can make a difference between a barely bearable existences to one worth living to the fullest.

So how do you become involved with one of these? IMG_0001.JPG

Look around at your community to see if there are some groups already established. Ask your friends, your health care communities, the various Parkinson’s organizations, go online. If there are multiple groups in which you are interested attend a few or all to get a feel of the vibes…

For instance if you are young person with PD, you might prefer to join a young support group, a women’s group (because gender issues are different especially if child rearing), or single people with PD, or even one based on PD status like already had DBS (deep brain stimulation) and such. I, myself, truly enjoy meeting with other women with and without PD because independent of our health status most of us share same goals and life challenges like working and having kids, being a mother, a wife etc. Sometimes we simply feel more comfortable in expressing ourselves or talking about sensitive issues if we are surrounded by similar minded individuals. But, above all choose wisely. Stay open to others ideas.

If no such group is available that touches your heart or seems to meet your needs at the present time consider starting a group of your own.

However, before you take such an undertaking seriously think about your health, your time constraints and more important your physical limitations. Is this going to put undue stress on your physical and emotional well-being? Can you handle the responsibility alone or would having one or two people to co-create and share responsibilities for the group work better?

Think about:

  1. How often do you want to meet and where? Monthly, quarterly etc. keep in mind meeting on a scheduled basis is easier to remember and have greater attendance.
  2. How are meetings going to take place- have guests all the time ( this can create a lot of work for one person), or once in a while like special events, are the group going to be free to talk about issues or one person is going to lead?
  3. Is there a need in your community which has been unmet
  4. Is the place accessible to people you are trying to reach? Look for large rooms that are free like a public library, assisted living, nursing home, or hospital conference room. But, make sure this place has good parking, handicap accessibility and preferably access to public transportation.
  5. Time of day for meeting is also extremely important which has to take into account the age group of people trying to reach, are they retired or employed, can they drive themselves or need rides?
  6. Are you opening the group to patients only, caregivers only, both?
  7. What are the meetings going to look like? A lecturer/guest speaker? Open exchange of information, stories? Both? Participate in activities like painting or singing?
  8. How do you plan to get word out to community? Flyers to doctors, place ads in newspapers – note: some communities allow free advertisement, also may get help from hospital, nursing homes, assisted living etc. A web page/ social media can be the easiest most affordable way of getting word out. But, don’t forget about the old phone which always works among the elderly and some groups.

If you are reading this then you are already involved most likely in a support group or perhaps still feel isolated now you have some basic information to help you start the New Year on a positive note knowing full well that you are loved, you matter and are not alone and together we are going to make 2017 the BEST year possible by breaking down barriers one small shuffling step at a time!

Happy New Year 2017!!!

All the best from the desk of Dr. De Leon a.k.a. Parkinson’s Diva

Stay tune for my new book coming out next year-

@copyright  2017

all rights reserved by Maria De Leon MD

 

 

Rethinking Parkinson’s Treatment: By Dr. De Leon

“stop focusing on what happened and start focusing on what’s going to move you forward.”

 

We have come a long way in the way we think about many neurological diseases since I first became a physician. 25 years ago we had a limited number of medications to treat Parkinson’s plus the thinking was that patients with this illness were doomed to a life fraught with physical limitations that were out of the control of the individual who simply had to accept his or her fate.

Now we know that although there is still no cure, there can be life after PD. We have the power to control our future to ensure the best possible outcome.

Although many of the tools and techniques of rehab to aid patients with PD are not entirely new and in fact been around for decades, the expectations of patients and doctors has shifted considerably. There is now a greater emphasis on recovery and maintaining function because contrary to previous beliefs… The brain is capable of remodeling itself – However this does not happen overnight nor without hard work and will power. The best outcomes for those living with PD come by from earlier rather than later treatment introduction as well as rehab. Even in early stage of PD when patients just begin to notice gait deficits studies show that there is a dramatic decrease in cadence and stride that can be improved and maintained if physical therapy begins early before real problems like falls occur. The more people with PD practice their therapy regimens (like cycling, walking, boxing, dancing, tai-chi, swimming) the stronger and smoother the new brain pathways developed will become. These therapies are not confined to traditional ones but also those which are non-traditional like singing and painting or sculpting. Also programs like BIG & Loud  can be of great benefit.

Thus, as soon as one is diagnosed one should talk to their physician about referring to physical therapy, occupational and speech therapy. Part of the conversation should include discussing daily or weekly activities which will help to maintain and improve function. Even when wheelchair bound one can do tai-chi or laughter yoga to help guard against depression and decrease rigidity and pain. The goal is to stimulate new pathway development and strengthen the connections which are becoming loose. But the rehab should not only include physical activities but also mental ones since PD affects memory as well. Of course there is a belief that exercise can improve and delay memory loss but actively engaging in mental activities like learning new skills, playing games, solving puzzles, learning new languages, as well as socializing will be much more beneficial.

But, before you go begin to recovery, you must first address your own emotions. The reality is that until it happens, most of us take for granted all the little things we are able to do without giving it a second thought like multi-tasking, being able to get dress, able to tie our shoes, brush our teeth, feed our self, cut our food, etc. we don’t ever think what would happen if I were to lose our independence suddenly and unexpectedly. How would we react? What would we do? How will we cope? The notion can be extremely traumatic especially for an active independent person. When we get a diagnosis with PD is not uncommon to feel out of sorts, lost, depressed because we are grieving for loss of self-wondering what our next move will be, what our new place in the world, or role in our families will be? We wonder what the future holds for us. To make matters worse Parkinson’s also wreaks havoc with our emotions making us anxious, and depressed. If we don’t get a hold of our emotions and seek medical care which may include counseling, these can ruin our life leading to isolation, worsening depression, fatigue, sleep, and apathy. These emotions if unchecked and untreated can stand in the way of a recovery.

3 Sure ways to better outcomes and happier you:

First step is self-awareness of problem – one can’t solve a problem without first admitting there is one. Get diagnosed. Then work on what needs attention in your life at the time-ask yourself how I am going to do my job or fill my responsibilities if I am not well? So place yourself at top of to do list. This means accept diagnosis and start treatment.

Second, find a support group– people you can open up and also will be there when you need help, this includes looking for financial help if needed, plan for future.

Third, strengthen yourself by embracing the disease and putting a plan together to exercise, eat right, sleep right, go to counseling if needed, follow through with doctors and tailor your own therapy to fulfill your needs. An Avant guard way of approaching therapy is called progressive task related training. For instance, if having trouble using limb to eat work on ways to improve function and use of that limb getting right utensils, taking right meds, etc. The goal is to promote autonomy for as long as possible. This also includes educating yourself and others about your disease. Make short term, medium term and long term plans to accommodate for your new needs and life style. This includes preventing falls which frequently occur with PD -so should have some balance training like water therapy which I have found to be the best solution for this problem.

5 ways to achieve rewiring of your brain

  1. believe in yourself- “I think I can, I think I can…”
  2. embrace the positive attitude- say no to the bad!
  3. visualize getting better- walking better, shaking less, talking louder
  4. take steps towards your goal- monitor your symptoms and act on them quickly, start an exercise program, start a mentoring program..
  5. repeat, repeat, repeat….

soon you will be on your way to a new you!

Parkinson’s disease and The Work Place: By Dr. De Leon

lucile ball

This is a classic picture of one of my all time favorite comediennes with a well known skit. Every time life comes at us fast, this is what I am reminded of.  Sometimes no matter how hard we try, we have to swallow some of the stuff coming our way in order to keep moving forward. As I have been having more recent medical complications due to my Parkinson’s disease and medication side effects, I again was reminded of Lucille Ball. I like her initially was thinking in the last few months that perhaps I was on the other side and I could handle going back to working as a physician despite my PD (easy- peeze-no problem). However, as life demands have increased followed by  one thing, another and another, I have begun to feel like things are speeding up on my own conveyor belt causing a big pile up, making the juggling and keeping up a bit more hectic and demanding. This does not mean I am giving up on practicing neurology again or stop my advocacy.

But, I have begun to think more about those of us who live with chronic illness and have a job, trying to maintain one, or are looking for ways to earn a living with a different career after PD diagnosis.

As many of us have learned, it is not always possible to keep working at previous capacity or even at any capacity when illness strikes particularly in the face of continuous fluctuations especially if sudden or unpredictable, as mine has been lately, or as we approach advanced stages and begin experiencing motor fluctuations such as dyskenesias.

According to a British study of 308 Parkinson’s patients, 82% had ceased to work after 10 years of disease, 57% retired early like me due to disease.

We all know life with a chronic disease like Parkinson’s is a constant juggling act. We have to learn to balance our health along with family, social, and work responsibilities. This can be a feat for many.

When we first get diagnosed after the initial shock wears off and reality sets in, we have to consider our financial resources to be able to continue providing not just for those who depend on us; but more importantly for the increasing financial needs that come with being chronically ill.

So as you contemplate your future financial stability, you must start making concessions for a time when you are no longer able to carry out your present job duties or perform any standard job. Think of the worst scenario and build from there but without going to panic mode or being paralyzed by anxiety and fear.

I am sure you will begin to wonder if you should share your diagnosis with your boss or fellow employees.

First, I have to say candidly and with all due respect-it is no body’s business unless you want it to be. If your job is unaffected – may not need to disclose. But if you are having to take off more, or performance no longer the same as it was prior to symptoms of PD, this maybe an indication of the need to discuss diagnosis sooner rather than later. If you are self-employed of course you have more autonomy. You have more flexibility of decreasing hours; keeping in mind as someone who knows first-hand about running a business when boss is ill productivity and quality inevitably begins to decline unless there is someone else with vested interest to maintain. Also when you are the boss, your responsibility to those you employ supersede your take home, this means that when earnings decrease only person affected is you ( particularly at the beginning unless you curtail number of employees and/ or shut business down).

Second, take care of yourself and your health by eliminating undue stress by asking employer for things to make your life easier. Taking more breaks, coming in late once a week, having the appropriate tools to make job easier, higher chairs, work from home, etc. of course the better the worker and more indispensable you are. Subsequently, the more likely to have leverage and demands (needs) met.

Third, prepare yourself mentally about the possibility of losing your job due to PD. Few ways to be prepared for future is to continuously learn new skills (I have become a writer), update your resume, look for jobs that allow you independence, flexible hours, work from home such as telecommunications. The key is to find a new passion. We all know that when we are actively pursuing what makes us happy we infuse joy to others and work is no longer so stressful. After all you have the keys of your destiny to make the right accommodations to help with your disease.

But just because its fun it does not mean it will necessarily be easy. After all work is work and can exert a toll on our bodies. for instance, even though I very much enjoy traveling and speaking, this requires a lot more dopamine than when I am just relaxing at home.

Fourth, ask yourself truthful questions like does my irritability make it difficult for others to work with me? Could my cognitive slowness cause a serious problem at work?, do my tremors get in the way of performing daily activities at work? If you answer yes to any of these questions, you may need to talk to your employer about finding ways to avoid or diminish these symptoms so you won’t lose your job. Perhaps, it may be wise to think about career rehab or alternate jobs, as I mentioned earlier especially within your place of employment. Does your boss need meticulous work behind the scenes? PD patients have been found to be more capable of performing these types of tasks especially if repetitive.

Fifth, do not underestimate your mood- particularly for us women with PD it was discovered in similar study as above that women are more prone to leave the work force earlier due to depression, anxiety, and overall general poor quality of life. We as women also have to recall that we have more stressors such as being caregivers to elderly parents, children, grandchildren, and many times have less financial resources available to us. remember to enlist help of a team of professionals to help planning for future. these include social workers, estate planning lawyers and financial planners.

Finally, You may require to plan for both long and short-‘term costs of medication, home adaptations, insurance and other health care related needs’. This also includes planning or at least thinking weather or not you might apply for social security disability or early social security which can affect retirement plans.

For more information go to :PDF  link below to find financial and legal advice/support.

 

Sources:

http://www.pdf.org/en/science_news/release/pr_1415296989

http://www.pdf.org/fin_legal_work

http://www.pdf.org/en/fall05_employment

When to disclose illness at work

http://www.ncbi.nlm.nih.gov/pubmed/16941456