Revisiting Pain in PD ….the 50 shades of Pain Experienced by Parkinson’s patients: By Dr. De Leon

Revisiting Pain in PD ….the 50 shades of Pain Experienced by Parkinson’s patients: By Dr. De Leon.

Treatment for over active bladder in Parkinson’s (revisited) : by Dr. De Leon

 

 

Whenever somebody tells me, you go girl! I generally have to!” -unknown

As I mentioned before in a previous blog Parkinson’s patients as do patients that have various parkinsonian syndromes like MSA ( multi system atrophy) can have varying degrees of bladder issues ranging from increase urgency,frequency to outright incontinence!  Having bladder function problems can lead to severe psychosocial problems like depression and anxiety particularly among patients over 65 years of age, they can also lead to significant medical and economic burden.  This is by no means an easy task to solve since independent of neurological disease, over active bladder ( OAB ) affects up to 27% of men and 43 % of women of the global population. Now add a neurological condition atop of this and the problem becomes even more challenging for physicians.

Fist,we should review a few medications which make this problem worst, if possible should try to avoid:

  • Diuretics
  • antipsychotics
  • cold medicines
  • narcotics
  • sedatives
  • hypnotics
  • antidepressants
  • antihypertensives
  • analgesics
  • Over the counter sleep aids
  • herbal remedies

Proper management of patients with urinary problems like any other problem begins with a thorough and comprehensive evaluation, including a void diary, urine test to look for infections, diabetes and the such. Of note those of us who have chronic illnesses by definition are on multiple medications which tend to complicate evaluation and treatment but worsen by age. Physical exam is also extremely important since it can tell physicians for instance if there is enlarged prostate in men or enlarged uterus in women causing pressure on bladder or blocking sphincter. Your doctor may choose to do urodynamic studies which includes measuring pressures of pelvic muscles and urethra and voiding flow-this sometimes requires insertion of needles into bladder and abdomen to evaluate…can be uncomfortable and moderately painful at times especially if you are in mid to late stages of disease. Other tests may include cystoscopy which involves looking into bladder with a camera inserted through a long narrow tube via the urethra …similar to a colonoscopy except different organ! Other times, they may simply choose to do volumetrics…fill your bladder with fluids via an IV ( intravenous Cath) until they can reproduce symptoms.

Once all these studies are done, which usually are done either by a urologists or a gynecologists, and a cause of the urinary malfunction is ascertained then treatment can be instituted.

Aside from evaluating all medications which MUST always be done at the onset of any visit to make sure current medications are not the ones causing or aggravating the problem, an adjustment of dopamine medications is often necessary and should be done early on as well. This is because Parkinson’s and other parkinsonian syndromes commonly have bladder dysfunction as part of the disease spectrum. If however you are still having problems after going through above steps then the recommendations are as follow:

1) Behavioral modification:

This entails a strict commitment on the part of the patient in order to improve voiding…if done properly..it can be very effective. Insurance will pay for this however, must go to a trained professional experience in this type of therapy to have greater success rate.

I like this because this is treatment modality epitomizes “individualized medical care

This includes voiding diaries, timed voiding, pelvic floor muscle strengthening exercises, and urge suppression techniques (e.g distraction, self-assertions), biofeedback, electrical stimulation into sacral nerves or pelvic muscles, fluid management, caffeine, reduction, dietary changes ( I.e avoiding bladder irritants like caffeine, chocolate, spicy foods etc.), weight loss and other life style changes.

The beauty of this is that it can be combined with other treatment modalities.

2) Pharmacotherapy:

this includes a number of oral and transdermal( across skin) medications. These can be very effective and used after behavioral therapy failed or in combination. However, their efficacy is limited due to side effects although usually non life threatening. All medications come in extended release.

The medications in this class are primarily antimuscarinic- they include oxybutin (Ditropan, Oxytrol), tolterodine (Detrol), solifenacin (Vesicare), darifenacin (Enablex), **trospium (Sanctura- does not cross blood brain barrier), fesoterodine (Toviaz). **This latter may be best suited for treatment of elderly patients due to less side effects. Typical side effects of this class include dry mouth, constipation,dyspepsia, urinary retention, urine infections, impaired mental status, and dry and itchy eyes. Since a lot of these symptoms can already occur with PD or as side effect of other PD medications have to be extra vigilant when starting these meds and discuss any sudden changes with your physician ASAP!

The new comer is mirabegron ( Myrbetriq) for those that can’t tolerate antimuscarinic. Although may act as one it is a beta 3adrenoreceptor. I find this medicine to work very well especially for those patients that have mixed type urinary problems where they have over activity and increase sphincter control.

3) Botulinum toxin A:

Once patient had failed above treatments, your physician may suggest this treatment modality. However, not everyone is qualified to do this procedure…it requires operating room time and frequent visits…effects can last up to 9 months (on average 6 months). You Must always have an experienced physician doing this procedure. It is expensive and not all insurances cover costs.

4) Sacral neuromodulation:

This has become the leading treatment of choice for those that do not respond to normal treatments. This treatment was approved since 1997 by FDA . Reports have shown great efficacy and safety with gradual implant of electrodes into third sacral nerve foramen (aperture) initially during a test phase of 1-2 weeks followed then by implantation of pulse generator. The electrical impulses delivered to the root of the third sacral nerve has been shown to reduce urgency, frequency, and incontinence. Most common side effects include pain at stimulator site, pain at lead site, lead migration, electric shock, and revisions. However, as these procedures are done more frequently, they are becoming less invasive along with smaller devices which will lead to fewer adverse effects. Just like having DBS, you will need periodic adjustments and will not be able to do MRI’s and will require replacement of pulse generator.

5) Surgical Intervention:

This still remains as the last possible alternative for severe cases that are unresponsive to any of the above treatment modalities.

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References-Kim, Ja-Hong. Management of Overactive Bladder and Urge incontinence. Practical Neurology. Vol. 13, No.7, September 2014. 27-32.

 

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

Surviving a Stroke at 33 (and Blogging About It)

There is definitely an increase in strokes in young people over the last decade….

WordPress.com News

Christine Hyung-Oak Lee suffered a stroke when she was 33, and she has written about her experience in an inspiring personal essay for BuzzFeed.

Before that, she was using a pseudonym on WordPress.com to blog about her experiences, share details about her life, and practice her writing. In 2007, shortly after New Year’s Day, Lee wrote the following in a blog post:

something in my brain burped. most of what i want to do is just out of my grasp. i feel like i know how to do them, but then when i go to do them, i just…CAN’T. day by day, i’m regaining my abilities, so i hope this is just temporary.

Lee’s commenters urged her to see a doctor, and the next day, she responded to them from a hospital bed: “I had a stroke! Will be better.”

I spoke with Lee about her experience, and…

View original post 837 more words

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

 

Coping with Fatigue in PD : By Dr. De Leon

As the new school year get off to a busy start and we begin to approach the holiday seasons the fatigue experienced by many of us with PD may seem to intensify….here are a few things to avoid and keep in mind in your daily life to keep from feeling like you are totally worn out…

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