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
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