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

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

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

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

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

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

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

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

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

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

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

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

Therefore it is imperative that you prioritize your problems:

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

All of these will require different focus from your doctor.

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

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

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

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

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

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

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

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

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

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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

cancer risk in parkinsons, chronic illness, parkinson's disease

The Golden Team Necessary for the Best Parkinson’s Care: By Dr. De Leon

The other day, I read something someone wrote about which ideal team members should engage when considering long term care of PD. I was a bit disappointed to find that whoever wrote that piece was missing a large part of what goes on with Parkinson’s patients behind the scenes and what their needs really are. Especially when we realize that this chronic illness not only affects dopamine but other neurotransmitters like serotonin in the brain; but more importantly their function or lack off has great implications for our entire body from our guts to our skin and everything in between.

Therefore, when choosing your fantasy team or ideal “golden” players to be in charge of your PD care is best to keep in mind that just as you would not take an expensive car like a Ferrari to just any local mechanic if there was a problem with it you should not trust the care of your complex Parkinson’s disease just to anyone!

An all-star team that you should pick to stand on your corner to help fight for your interests. Ideally, this should include the following members:

1.  Neurologist (at minimum if MDS are not readily available in your area/ preferably an MDS- no need to have both if MDS readily accessible). MDS/Neurologist needs to act like the quarter- back. He or she understand your disease intricately and know you the best therefore, should be the ones coordinating all the care when it comes to PD issues to ensure the BEST possible outcome with the most prolonged quality of life!!!

2.   GI (gastroenterologists) – because of decrease motility, increase constipation, increase reflux,    trouble swallowing and nausea both due to medications and subsequently due to poor gastric motility; therefore, it is imperative you have a good GI specialist you follow on a routine basis. They can provide alternative treatments that neurologists may not be aware of like new meds for constipation etc. (Linzess is the latest and it won’t interfere with PD meds or aggravate PD symptoms).

3.   Urologist- because of increased bladder problems with PD, erectile dysfunction in men due to medications and sometimes due to disease if have other Parkinsonian syndromes like MSA, also because there is a documented increase in prostate cancer in those men taking Stalevo. Therefore, they serve to screen for pathology as well as offer various treatments and surgical procedures like Botox injections into the bladder that the neurologists or MDS may not be able to do themselves.

4.   Gynecologist – for women with PD because medications can cause menstrual irregularities, sexual dysfunction can occur both as part of disease and due to medicines, bladder issues, and an increase in breast cancer in certain subtypes of Parkinson’s population like LLRK2. They can treat these diseases and screen as well as offer procedures to help. Newest medication for treatment of bladder dysfunction which I have found to work well in PD patients with over active bladder issues is Myrbetriq.

5.   Dermatologist-due to an increase incidence of melanoma in PD patients especially if you have a history of this disease already present in your family. They can screen and provide treatment and early cure should melanomas develop and safe your life!

All these specialists should be able to work well as part of a group of multiple specialists where the neurologist or MDS is in charge of the ultimate game plan (this is crucial for a good working relationship with everyone involved). They should also have good working knowledge of the entire body system as it relates to Parkinson’s disease not just their own specific area. (This is equally important if things are going to progress in the right direction to maintain and prevent issues down the road). It is important to bring these specialists on board as early on as possible and maintaining them on as a regular part of the team for the duration of the illness not just on as needed basis. ( you may not need to see them as often as the MDS/neurologists but at least once a year just to maintain contact and make sure that all preventive measures are being done and keeping up with new treatments; more often if you have risk factors in some of the cancer areas)

Finally, you MUST engage the services of ancillary staff: PT, ST,OT, perhaps even a dietician and social worker – the service of these professional will become more invaluable as time progresses and disease advances. They will be the backbone to guaranteeing you have the right tools for a successful journey with PD.  At very least they will offer valuable information and tools to help improve your quality of life and those around you for every stage of your illness. Find those that have training and expertise in dealing with Parkinson’s disease and preferably those that are certified in Lee Silverstein voice training (LSVT) and the equivalent of the voice program LOUD, the BIG program which activates the gross motor system!

I guarantee a brighter Parkinson’s journey with this “golden” all-star team guiding your disease forward.

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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 defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

 

cancer risk in parkinsons, chronic illness

High Risk of Prostate Cancer in Parkinson’s Patients Taking STALEVO : By Dr. De Leon

Painting by Jorge Jm Lacoste

This is the age of knowing….when a urine flow is more than just a flow.”

Aside from the fact that Parkinson’s disease is proving to be a systemic disease affecting mind and body certain treatments as well as carrying certain Parkinson’s genes like the LRRK2 and PARKIN gene which seem to predispose those who carry these mutations to have an increase in certain types of cancers like breast, prostate and melanoma.

As I have discussed previously in previous blogs- http://www.defeatparkinsons.wordpress.com  – concerning dopamine effects “Dopamine: Friend or Foe?” and “Parkinson’s disease and melanoma”, Parkinson’s patients have a higher risk of melanoma 2-4 x the risk which according to some studies appears to be higher in men. This effect is both due to medications as well as genetic predisposition by those who have PD. Concomitantly, men with PD also have an increase risk for prostate cancer (2.4 % vs.  .5%) This increase risk extended to first, second and third degree relatives. This came from the Stride PD (STALEVO reduction in dyskenesia evaluation) study (14 countries participated including France, Australia, & the U.S. with over 300,000 patients) which suggested an increase risk of prostate cancer in men among those taking STALEVO (carbidopa/levodopa/comtan) vs. those taking Sinemet (carbidopa/levodopa) alone.

Since Parkinson’s disease is associated with pain, stiffness along with bladder dysfunction along with urgency and frequency the signs and symptoms of prostate cancer may be difficult to distinguish unless you are aware of it and actively thinking about it. So make sure you discuss with your primary care doctor, neurologist, and/ or urologist about the increase risk if you are taking this medication so they can follow appropriate protocol and do more careful and frequent screening than otherwise recommended particularly since guidelines for screening have changed.

Symptoms of prostate cancer include:

  • Need to urinate frequently especially at nighttime
  • Difficulty starting or stopping urine
  • Weak or interrupted flow of urine
  • Painful or burning with urination
  • Difficulty with a erection
  •  Painful ejaculation
  • Blood injuring or semen
  • Frequent pain or stiffness in low back or  upper thighs or hips

At present there are no guidelines from Academy of Neurology, that I am aware; thus, my personal recommendations are to follow the Academy of Urology recommendations.

According to the urology guidelines, PSA (prostate specific antigen) is no longer necessary recommended for men under age 40, nor for ages 40 to 54 unless at high risk ( e.g. family history or in this case intake of Stalevo which gives a fivefold  increase in risk)-the mortality rate due to this cancer in this age group is 1:1000. Thus, the greatest screening benefit using the PSA test is in the age group of 59 to 65 years old according to Academy of Urology. Furthermore, in men over 70, screening is no longer recommended either unless life expectancy assumed to be greater than 15 years ( i.e. male is in extremely good health). Even when screening is done, recommendation is to do test every 2 years.

Keeping in mind the increase risk of prostate cancer particularly if you have family history of this disease if you are taking Stalevo make sure to discuss with your physician to ensure appropriate follow up particularly if you are a young man.

Remember, Prostate cancer is a treatable disease if caught early!

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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 defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com