chronic illness, parkinson's disease, Parkinson's Health, parkinsons treatments

Three things I wish someone had told me about PD : By Dr. De Leon

Not only is there still much to be learned about this extremely complex disease, as I mentioned in my article “What is wrong with me?” But, despite all the advances in the field there continues to be a great deal of speculation regarding life with Parkinson’s after the diagnosis. Today, I am exposing some of the truths you wish you had been told:

      1. It is difficult to maintain a traditional job once diagnosed with PD.

I realized that the old way of doing things was no longer going to work. This meant that my traditional job as a doctor was no longer going to fly simply because the level of mental acuity required would consume my dopamine stores faster than I could replenish them. Since it is difficult to maintain employment once diagnosed consider options such as a different venue/vocational rehabilitation. PD patients have been shown to perform well in creative roles, and doing repetitive tasks. Perhaps the new job lies in the use of the new found talent such as being an artist, photographer, writer.  But, most importantly need to start financial planning, including disability documentation if young onset and execution of will for long term care.

       2. It truly takes a village to care for a Parkinson’s patient.

Since Parkinson’s affects all of our insides, feelings and all, as well as our outside; living with PD while raising children, having a family, running a household, holding a job, and maintaining personal and interpersonal relationships is extremely difficult. Especially, as disease progresses you simply cannot go at it alone! You need others to help pick up the slack. Part of this network of support should include close friends, relatives, social workers, and PD support groups. Spread the wealth if you will with those willing to help out to avoid burn out in those closest to you like spouses.

     3. Prevention rather than reaction to symptoms is the key for a better quality of life with PD.

Intuitively, I surmised from treating my patients that indeed “an ounce of prevention is worth a pound of cure.” Yet, it took me a few years of living with PD myself before I fully comprehended the full ramifications of a proactive treatment for PD. As in the treatment of cancer patients, we first want the remaining dopamine cells to work more efficiently, and keep other cells from dying off. Hence, a cocktail of medicines works best. This treatment is maximized with constant surveillance for signs of new symptoms before problems arise. This requires a team of multidisciplinary experts including PT, OT, and ST. Remember the brain function’s like a see-saw, if you add too much of one thing on one side you are bound to get off kilter and go flying up in the air unwillingly and bounce back when that substance starts to wane.

WHAT are the things you WISH you had KNOWN in advance about living with PD?

Feel free to share.

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

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

11041768_1033987543281594_3975818387690600462_n11050738_1033987696614912_3381427546050772716_n10858504_1033987213281627_698869562727582807_n10446008_1033987376614944_8184722993389288407_n

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

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

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

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

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

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

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

Therefore it is imperative that you prioritize your problems:

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

All of these will require different focus from your doctor.

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

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

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

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

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

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

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

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

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

*******

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

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

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

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

chronic illness, parkinson's disease, parkinsons health and beauty tips, tips for applying for disability in PD and other chronic illnesses

Tips on Getting Disability Benefits Efficiently & Effectively: By Dr De Leon

When confronted with a chronic illness like Parkinson’s disease, after the initial shock of diagnosis settles comes the question will I be able to continue to work and for how long? Studies show that one of the biggest factors of loss of employment is depression in PD and along with it goes a decrease in quality of life. Continuing to be productive in society and working has a higher rate of overall life satisfaction along with better life within those who are chronically ill according to a recent study on the mental health issues that lead Parkinson’s patients to lead the work force.

Thus, deciding to stop ones job is an extremely personal and emotionally charged decision one will ever have to make. If you are like me, your job has helped define who you are. Suddenly stopping ones employment can leave one feeling empty and striped of one’s own identity and wondering aimlessly if not careful. I thought that my identity was tied into my profession – being Dr. De Leon -was all I ever knew- it was hard to adjust to being just me away from my job. Finally, I realized that although my career was my vocation and passion it was only a part -albeit a huge part- of who I was and am as an individual but by no means the entire person, I am still a mom, wife, daughter, friend just as before.

For some not working has never been an acceptable alternative. It may be difficult separating the job from the person at first. However, at times we have no choice but to stop performing the “job” we once enjoyed or were good at. Our bodies demand that we take a time out and our physicians sometimes tell us that if we continue to work we are doing so at the cost of our mental and physical health. Then it is time to step back and make some hard decisions.

The question becomes:  to work part time? Stop? Change jobs? Apply for disability?

       In my case, for instance, at the time of my diagnosis the stress of my demanding profession was making my illness worst, I had already tried working part time- a difficult Thing to do when you are a solo practitioner with a thriving practice. I was unable to take all the medications that I needed to function physically and not feel that I was somehow going to be compromised mentally.  So, it was decided with the help of my physician and my husband that I should take a time out to let myself heal.

This was not an easy decision to make, by any means, since like most who have worked for years in a profession have invested more than time and effort but actually invested their lives, sweat and dreams in a career; to then be asked to give it up or walk away can break your heart!

As a doctor and as a patient, I have experienced unfortunately the slowness and sometimes unfairness of the system in providing help and disability to those that truly needed it. I have had ALS  and Cancer patients who even on their last stage of their illness were denied help despite the severity and finality of their disease. Other times help was delayed so long that they end up without benefits or received them as they were on their death bed. In these cases, having a lawyer to advocate for your rights would be most beneficial.

It is usually when patients are sickest and weakest that they have the least amount of energy to go through the system. Applying for disability I think is a little game of wills and persistence. In my experience it seems that almost 1/2 of the patients get denied right from the start and have to be persistent in reapplying. What happens initially, I think, as it did a close friend of mine and many others like her….is that most of us who suddenly become ill do not like to give in to the illness and will strive to make it work for as long as possible until we can no longer keep doing our jobs then apply for disability or assistance to be met with denial when there is financial and physical hardship. Therein lies the problem with the current system; it is as if they punish people who earnestly try to continue making a living despite the illness or physical disability or impediments. The current system rewards those that anticipate or somehow plan to be “disabled” and don’t really put much effort into continuing to work with an illness. This is a very difficult thing to grasp. The system is broken and in desperate need of repair! (but more on that topic another day) when applying for disability whether it be through private insurance or social security, they expect the person making application to show extensive documentation of gradual decline both on skills and in wages…

Therefore, the key to getting disability efficiently is documentation :

DOCUMENT! DOCUMENT!

This starts as soon as you are diagnosed! Even long before you think about applying for disability or ceasing work!! (You almost have to assume that you will need to stop working and will need assistance at some point.) Especially important to write down how ADL’s (activities of daily living) are impacted – as soon as you are diagnosed start writing down how your life is impacted. What you can’t and can do. Download a form from the www.parkinsonsaction.org  website which will help you and your physician keep track and document important changes. This form is not admissible to SSI or other insurances but will serve as a guide.  You may keep one for your records and have another put into your permanent record.

The form includes 4 parts: section I- motor impairments such as difficulty walking; section II-physical impairments such as having to urinate frequently or having double vision; section III-non-motor impairments like trouble concentrating, staying on task, memory problems fatigue and anxiety; section IV- additional physician comments as within all above sections physician can make comments.

Even when you think everything is settled and have professional insurance that’s no guarantee as it happened to a friend of mine because 1) most insurances expect a date of start of illness and a foreseeable date when illness resolves- they have a hard time or are unwilling to understand that chronic illness by definition have no date of improvement! 2) Some insurances may even try to argue that problem like PD is hereditary or familial problem. These cases may require a lawyer!

There are 4 disability  benefit program that can help you will unable to work:

Short-term disability insurance

Long-term disability insurance

Social security disability insurance

Supplemental security home – designed for people with limited income and resources

Talk to your employer about changes in duties- doing repetitive or single task are best for pd patients. Don’t forget to document when and whom you talk to. It is important to understand application rules before applying.  Don’t be afraid to ask questions of your employer or the human resources office of your work or even of your insurance company before you decide to apply for disability.

Be informed!!  This will help avoid many headaches … Also, remember that usually by time you are in need of disability is usually because you have reached your limit of your physical and mental capabilities which may make the process that much more painful. Therefore, if you are not up to the challenge alone, make sure you take a friend or relative who can advocate for you or get a lawyer.

You can apply for SSDI- in 4 ways:

  • Online @ www.ssa.gov
  • In person at your local Social security office
  • By phone to your local Social security office
  • By phone @ (800)772-1213

http://www.ssa.gov/disability/disability_starter_kits.htm#sb=1

  1. Science News (Nov 2014): study finds that mental health issues lead people with Parkinson’s to leave the workforce.” PDF http://www.pdf.org/en/science_news/release/pr_1415296989

_______________________________________________________________

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

parkinsons health and beauty tips

Love & Parkinson’s: by Dr. De Leon

“Love will find a way through paths where wolves fear to prey.” Lord Byron


Today on this day of love and friendship I want to remind everyone about the power of LOVE in our lives- as it is the biggest intrinsic dopamine producer of our brains!!!

We all know that feeling of being completely head over heels with someone and feeling on top of the world, unable to eat or sleep, yet having complete clarity of mind. This my friends is the natural effect of dopamine. It feels GREAT! this is the feeling we strive to imitate each day we take our medicines- no wonder cocaine a dopamine receptor drug is so addictive!

According to the Greeks there are 8 types of love – and in my opinion all of them are capable of releasing copious amounts of dopamine in various degrees. This is the reason why we must not only stay connected with one another and develop these types of relationships but also find our passions to maintain a steady stream of dopamine in our brains keeping us healthier and more satisfied with our lives.

We all know about Eros which is our romantic love but this one is as quick as taking apomorphine- comes on strong but burns out fast and in order to preserve the feeling and connection we must switch to another type of love or dopamine replacement medication one which will be not so intense but last longer and be steadier. But if you are with your best friend – sparks will fly each and every time sending dopamine in truck loads with a single smile or look as it does me and the love of my life!


Philia– or brotherly or affectionate love was considered by Greeks as a much powerful type of love because it involved love between equals. This is the type of love between good friends. Having a friend that will keep you accountable in your disease is crucial to your well- being and success. Having a friend that sees you through your tough times with PD is invaluable. Be thankful for your friends today and make sure you let them know how important they are in your life. If you don’t feel like you have any close friends is time to find a new one in your support group or church. Don’t be afraid to make the first move.

Storge or familial love is the kind of love between siblings, parents and children. This can also occur between childhood friends lasting ’til adulthood. This is equally important to a better life with PD because lack of support from our family and special friends can lead to depression, anxiety, and isolation. Make sure that you include them in your care and diagnosis to help you become more empowered as an individual.

Pragma or enduring love is the kind of love in marriage a matured love (hopefully). This type can also be found in friendships which have endured for decades. I am lucky to have a few of these. How about you? This is a reciprocal kind of love which forces you to know yourself and boundaries well. Thus making you a more balanced and happier individual.

Then there is agape or selfless love. This type of love is unconditional like the type God has for us, or what we have for our kids and our pets have for us. This is filled with boundless compassion and endless empathy. This is the purest type of love. I have discovered that my little kitty knows exactly how much love I need. It is amazing how he knows when I am sick and in those days he does not leave my side for a second. It is comforting to know that there is someone out there that will love us no matter what- flaws and all. When we are loved unconditionally it gives us strength to keep fighting and moving forward. So be thankful today for those people that empower you to face an ever changing illness without fear of what might happen because there is someone to care for you and be there no matter what. For me my greatest love is God. I am not afraid of what tomorrow might bring because I know He has my best interest in mind and is strongest when I am weakest.

Finally, there is Philautia or self -love. This is the type of love many of us lack and I myself had to rediscover when confronted with a chronic illness. My being was wrapped in being a doctor and had to rediscover myself-

I found that …

•I am stronger than I thought •Despite years of hiding my physical flaws I embrace them •I love being a mom •I discovered that there is a life after PD •I can be me and still use my medical knowledge •I am creative after all •When I was young I was very shy and afraid of public speaking- now I have become a voice for women •I am excited about living (can’t sit around waiting to die) •I believe in the power of love, prayer and faith! •I believe in fighting for what you want and NEVER EVER Giving up – that there is always another dream!

You will discover that once you love yourself you will want to fight this disease with all of your might-you will have a positive attitude and view of your future. Once you are comfortable loving yourself can you begin to grow and expand your universe and give love to others!


Happy Valentine’s Day Everyone!!

@copyright 2019
all rights reserved by Maria De Leon