Save the Date! Saturday, October 28, PSP/CBD Research Update and Family Conference

Save the date!

Brain Support Network will host the:

PSP/CBD Research Update and Family Conference
Saturday, October 28, 2017
Crowne Plaza Foster City (San Francisco Bay Area)

This conference is for families coping with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).   Professionals and anyone in the community are also welcome to attend.

BSN’s planning partner is Dr. Adam Boxer and the team at the UCSF Memory & Aging Center. UCSF is the lead institution for PSP and CBD clinical trials. We are lucky to have them in our backyard!

The conference will be run from 9am to 5pm. The morning will feature international researchers in town for a major conference on PSP, CBD, and tau. The afternoon will feature Bay Area clinicians (from UCSF and Stanford), healthcare professionals, and families.

We anticipate registration will open in early September. Join our PSP or CBD email lists and we’ll send you an update when registration opens. Alternatively, check back at our website in September to register. Our meeting facilities are planned to accommodate 150 participants.

Stay tuned for more details!

Robin

 

Inheritability of PSP

This is an interesting, short question-and-answer on the Genetic and Rare Diseases Information Center (part of NIH) about the inheritability of progressive supranuclear palsy (PSP), from September 2012.

Robin

—————————

rarediseases.info.nih.gov/diseases/7471/progressive-supranuclear-palsy/cases/36421

Progressive supranuclear palsy
Genetics and Rare Diseases Information Center (part of NIH)
Last updated 9/12/2012

Question: My identical twin sister has been diagnosed with progressive supranuclear palsy (PSP). As it seems this disease may have a genetic cause, what is the chance that I would also develop PSP? And within what timeframe?

 

Answer: The following information may help to address your question:

What is the chance of developing progressive supranuclear palsy if a relative is affected?

Researchers do not yet completely understand the causes of progressive supranuclear palsy (PSP), so it is not possible to predict the chance of a relative developing the condition if one family member has been diagnosed. Most of the time, only one person in a family develops PSP. It is not very common to have multiple members of a family develop PSP. One study found that 7% of individuals with PSP had a family history of potentially related conditions (including dementia or parkinsonism), which suggests there may be a shared genetic risk factor.[1][2]

A few genetic risk factors (particularly a gene called MAPT) are known to play a role in the development of PSP.[3][4] However, these genetic risk factors have only been found in a few families. Researchers suspect that there are other genetic factors that haven’t been found yet that also contribute to progressive supranuclear palsy.

 

If a family member has a known genetic risk factor for progressive supranuclear palsy, what is the chance a relative has inherited it?

Close relatives such as parents, siblings, and children of an affected individual have a greater chance of sharing a genetic predisposition than do aunts, uncles, grandparents or cousins. Identical twins share their entire DNA, so they should have the same genetic risk factors.

 

If an individual inherited a known risk factor, what is the chance of developing progressive supranuclear palsy?

Having a genetic risk factor increases the chance of developing progressive supranuclear palsy (PSP); it does not guarantee that an individual will develop this disease at some point in their lifetime. The exact risk of developing PSP in an individual with a genetic predisposition is currently unknown.[5]

 

What is the average age at diagnosis for progressive supranuclear palsy?

Individuals with progressive supranuclear palsy usually experience the first symptoms of this disease while in their 60s.[1]

 

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

Warm regards,
GARD Information Specialist

 

References
1. Progressive supranuclear palsy. Genetics Home Reference. March 2011; http://ghr.nlm.nih.gov/condition/progressive-supranuclear-palsy. Accessed 9/7/2012.

2. Donker Kaat L, Boon AJ, Azmani A, Kamphorst W, Breteler MM, Anar B, Heutink P, van Swieten JC. Familial aggregation of parkinsonism in progressive supranuclear palsy. Neurology. 2009; 73:98-105. http://www.ncbi.nlm.nih.gov/pubmed/19458322. Accessed 9/12/2012.

3. Rojo A, Pernaute RS, Fontán A, Ruíz PG, Honnorat J, Lynch T, Chin S, Gonzalo I, Rábano A, Martínez A, Daniel S, Pramstaller P, Morris H, Wood N, Lees A, Tabernero C, Nyggard T, Jackson AC, Hanson A, de Yébenes JG. Clinical genetics of familial progressive supranuclear palsy. Brain. 1999; 122:1233-1245. http://www.ncbi.nlm.nih.gov/pubmed/10388790. Accessed 9/6/2012.

4. Dickson DW, Rademakers R, Hutton ML. Progressive supranuclear palsy: pathology and genetics. Brain Pathology. 2007; 17:74-82. http://www.ncbi.nlm.nih.gov/pubmed/17493041. Accessed 9/6/2012.

5. Litvan I. Update on epidemiological aspects of progressive supranuclear palsy. Movement Disorders. 2003; 18:S43-S50. http://www.ncbi.nlm.nih.gov/pubmed/14502655. Accessed 9/6/2012.

 

“Square patches of light remember you” – reflections on grandmother with PSP

This beautiful remembrance, “Square patches of light remember you,” was published in the June 13, 2017 issue of Neurology journal.  These reflections are by Bronte Nicole Ficek, whose grandmother Lola had progressive supranuclear palsy (PSP).  See:

www.neurology.org/content/88/24/2333.full

“How to Choose a Dementia Care Facility. Avoid My Mistakes.”

This is a very helpful article about choosing a dementia care facility.  The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65.  Donna shares the mistakes she made in choosing the wrong care facility…twice.

Here are the ten lessons Donna learned:

1.  Start investigating potential facilities NOW.
2.  Learn how your loved one’s care will change as he/she declines.
3.  Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4.  Know what you can afford.
5.  Assess if the facility is using innovative designs.
6.  Ask if the resident can safely go outside.
7.  Ask about safety.
8.  Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9.  Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10.  Check service levels and quality when the facility least expects you.

These lessons are detailed in the article here:

www.lewybodydementia.ca/dementia-care-facility-choice-avoid-mistakes/

How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016

Robin

 

July 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA

Here’s a list of guest speakers at many Northern California and Central California Parkinson’s Disease (PD) support group meetings for July 2017.

With my Brain Support Network atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are PD support group meetings:

* Lodi, Monday, 7/3: a neurologist is speaking on Parkinson’s and essential tremor. I know nothing about this neurologist but it seems to be a unique opportunity to hear a neurologist speak in Lodi.

* Soquel, Wednesday, 7/5: physical therapist addresses practical solutions to daily challenges

* Yuba City, Monday, 7/10: social worker talks about the importance of sleep for caregivers. Hopefully everyone in this area knows about the Del Oro Caregiver Resource Center. If not, please attend the talk just to learn about their services.

* Bakersfield, Tuesday, 7/11: fitness instructor demonstrating exercises and yoga

* Turlock, Wednesday, 7/12: social worker describes coping skills for dealing with Parkinson’s (for both those with a diagnosis and caregivers). Certainly many of these coping skills will be applicable to those in Brain Support Network.

* Palo Alto/Avenidas, Wednesday, 7/12: a palliative care social worker and hospice nurse will be addressing palliative care and hospice at home for those with neurological disorders (not just Parkinson’s). Many in the Brain Support Network group apply for palliative care. Come learn about what this is!

* Walnut Creek, Saturday, 7/15: movement disorder specialist Salima Brillman, MD, will be talking about the diagnosis and treatment of Parkinson’s. She is very familiar with the disorders in our group.

* Sacramento/Arden Arcade, Thursday, 7/20: an excellent physical therapist addresses physical therapy for PD. She may be familiar with the disorders in our group.

Generally, I recommend driving no more than 30 minutes to attend any of these meetings. If you attend a meeting and learn anything, please share with me so that I can share with others!

Do you need to know the support group meeting location, day/time, contact info, and how to RSVP if required? Please refer to the Stanford Parkinson’s website for all Northern and Central California support groups:

parkinsons.stanford.edu/support_groups.html

As always, I’ve deleted the deep brain stimulation-related talks.

Robin
———————————

Lodi
Monday, 7/3, 10-11am
Guest Speaker: Mohammad Kazmi, MD, neurologist, Lodi
Memorial Hospital, Lodi
Topic: Parkinson’s Disease and Essential Tremor
RSVP?: No.

 

Soquel (Santa Cruz County)
Wednesday, 7/5, 1-2:30pm
Guest Speaker: Ruby Straehley, PT, physical therapist
Topic: Practical solutions to everyday challenges facing those with Parkinson’s
RSVP?: No.

 

Yuba City (Tri-Counties)
Monday, 7/10, 1-2pm
Guest Speaker: Dorene Fanning, LCSW, family consultant, Del Oro
Caregiver Resource Center
Topic: Insights into challenges and the importance of sleep for caregivers
RSVP?: No.

 

Bakersfield
Tuesday, 7/11, 2-4pm
Guest Speaker: Deb McCormack, Bakersfield Mind & Body Studio
Topic: Exercises and yoga for PD
RSVP?: Yes to group leaders Linda Feist, 661-304-9227, or Bill
Burgemaster, 661-343-2707

 

Pacific Grove (Monterey County)
Tuesday, 7/11, 3-4:30pm
Program: Discussion groups – people with Parkinson’s and care partners
RSVP?: No.

 

Davis – regular and caregivers groups together
Wednesday, 7/12, 12:45-2:15pm (special day/time for July)
Guest Speaker: Marg Bartosek
Topic: Experiential presentation of Feldenkrais awareness through movement
RSVP?: No.

 

Turlock
Wednesday, 7/12, 1-2pm
Guest Speaker: Nancy Neufled Silva, PhD, LCSW, counselor, Turlock
Topic: Coping skills in dealing with PD for patients and caregivers
RSVP?: No.

 

Palo Alto/Avenidas
Wednesday, 7/12, 2-3:30pm
Guest Speakers: Libby Hagman, RN, clinical outreach coordinator, and Anthony Lupian, MSW, Transitions program coordinator, Mission Hospice and Home Care, San Mateo
Topic: Palliative care, hospice at home, and hospice house for Parkinson’s – recommended services and what’s new
RSVP?: No.

 

Sonoma/Vintage House
Thursday, 7/13, 10-11am
Guest Speaker: Margot Schaal, certified Feldenkrais practitioner
Topic: Feldenkrais
RSVP?: No.

 

Walnut Creek (Mt. Diablo)
Saturday, 7/15, 9am-noon (speaker 10:45am-11:45am)
Guest Speaker: Salima Brillman, MD, movement disorder specialist, The
Parkinson’s Institute, Sunnyvale
Topic: Diagnosis and treatment of Parkinson’s
RSVP?: No.

 

Elk Grove
Wednesday, 7/19, 10-11:30am
Guest Speaker: Christy Adams, RN, MPH, trauma prevention coordinator,
UC Davis
Topic: A matter of balance
RSVP?: No.

 

Merced
Thursday, 7/20, 10am-noon
Guest Speaker: Lisa Clawson, LVN, HealthSouth Rehabilitation, Modesto
Topic: Rehab services for PD
RSVP?: No.

 

Sacramento/Arden Arcade
Thursday, 7/20, 10am-noon
Guest Speaker: Christine Shade, DPT, physical therapist, Kaiser Roseville
Topic: Physical therapy and outdoor exercises for PD
RSVP?: No.

 

Mill Valley (Marin County)
Friday, 7/28, 1-3pm (guest speaker 1-2pm)
Guest Speaker: James Nevin, Sr., attorney
Topic: Estate planning and end of life issues
RSVP?: No.

 

“Anti-Tau Drugs for PSP Move into Phase II”

There’s not much new here from this report from last week’s Movement Disorder Society conference in Vancouver.  This report focuses on two anti-tau drugs being studied in PSP — one from AbbVie and one from Bristol-Myers Squibb.  The BMS drug was recently licensed to Biogen.  Both drugs proved safe in phase I studies, and both have moved into phase II trials.

Tau is the protein involved in PSP and CBD.  It’s one of two proteins involved in Alzheimer’s.

Here’s a link to the report:  (you have to register — no charge to do so — at Medpage Today to read the article)

https://www.medpagetoday.com/meetingcoverage/mds/65883

Meeting Coverage > MDS
Anti-Tau Drugs for PSP Move into Phase II
But phase I study of one agent pulled from presentation
by Kristina Fiore, Deputy Managing Editor, MedPage Today
June 08, 2017

June 2017 Parkinson’s Support Group Meetings – Guest Speakers – NorCal + Central CA

Here’s a list of guest speakers at many Northern California and Central California PD support group meetings for June 2017.

With my Brain Support Network atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are PD support group meetings:

Santa Rosa, Sat 6/3:  Neurologist speaks about mood, cognitive, and sleep disorders in PD.  This might be applicable to those with DLB and MSA.

Roseville, Tues 6/6:  Learn from a pharmaceutical company rep about a new drug for hallucinations and delusions.  This is applicable to those with DLB.

Sonoma/Vintage House, Thurs 6/8:  Topic is balance and fall prevention.  Speaker unlikely to know about any of the atypical parkinsonism disorders specifically but she probably has some good suggestions.

Stockton, Thurs 6/8:  Medical marijuana is the topic

Gilroy, Mon 6/12:  Listening to and discussing Michael J. Fox Foundation podcasts on sleep disturbances and urinary problems in Parkinson’s.  This is applicable to those with DLB and MSA especially.

Pacific Grove (Monterey County), Tues 6/13:  Speech therapist talks about speech and swallowing changes in PD.  This is applicable to all the disorders in our group.

Palo Alto Young Onset Parkinson’s Group Tues 6/13:  Medical cannabis is the topic

Palo Alto/Avenidas, Wed 6/14:  Manager of Stanford’s Farewell to Falls program will be speaking on the topic of fall prevention.  This is applicable to everyone in our group, whether you can take advantage of Stanford’s program or not.

Sacramento/Arden Arcade, Thurs 6/15:  Movement disorder specialist Lin Zhang, MD, PhD will be addressing the non-motor symptoms of PD.  These symptoms are part of the disorders in our group.

Mill Valley, Fri 6/13:  Registered dietitian speaks about nutrition and PD.  Most of the information should be applicable to those in our group.

Fremont, Mon 6/26:  Movement disorder specialist Han Lee, MD will be the guest speaker.  Unfortunately we don’t know his topic.  But he is very familiar with all the disorders in our group.

Generally, I recommend driving no more than 30 minutes to attend any of these meetings.  If you attend a meeting and learn anything, please share with me so that I can share with others!

Do you need to know the support group meeting location, day/time, contact info, and how to RSVP if required?  Please refer to the Stanford
Parkinson’s website for all Northern and Central California support groups:

parkinsons.stanford.edu/support_groups.html

As always, I’ve deleted the deep brain stimulation-related talks.

Robin

**********************

Half Moon Bay
Thursday, 6/1, 3-4pm
Guest Speaker:  Cherry Tuck, PD fighter
Topic:  Her journey
RSVP?:  No.

San Jose/Willow Glen
Friday, 6/2, 10am-noon (program starts about 10:20am)
Program:  Break into two groups — those with PD and caregivers
RSVP?:  No.

Santa Rosa (Sonoma County)
Saturday, 6/3, 1-3:15pm  (guest speaker 1-2pm)
Guest Speaker:  Allan Bernstein, MD, neurologist, Santa Rosa
Topic:  Mood, cognitive, and sleep disorders in Parkinson’s
RSVP?:  No.

Lodi
Monday, 6/5, 10-11am
Guest Speaker:  Dianna Powell, San Joaquin County coordinator, Legal Services of Northern California
Topic:  HICAP and Medicare updates
RSVP?:  No.

Roseville
Tuesday, 6/6, 1:30-3pm
Guest Speaker:  Saul Avila, Acadia Pharmaceuticals
Topic:  Nuplazid – new drug for psychosis and schizophrenia associated with Parkinson’s
RSVP?:  No.

San Francisco/UCSF Young Onset Parkinson’s Group
Tuesday, 6/6, 6:30-8pm
Guest Speaker:  Cameron Wisdom, Mission Bay Rock Steady Boxing Gym, San Francisco
RSVP?:  Yes, preferred to Monica Volz, [email protected]

Soquel (Santa Cruz County)
Wednesday, 6/7, 1-2:30pm
Guest Speaker:  Jenifer Armstrong, PharmD, pharmacist, Santa Cruz
Topic:  PD – Inside and out of the prescription bottle
RSVP?:  No.

Chico
Wednesday, 6/7, 1:30-3pm
Guest Speaker:  Attorney, Corporon Law Offices
Topic:  Long-term care planning (trusts, wills, and other legal documents)
RSVP?:  No.

Sonoma/Vintage House
Thursday, 6/8, 10-11am
Guest Speaker:  Vanessa Kettler, balance instructor
Topic:  Balance and fall prevention
RSVP?:  No.

Stockton
Thursday, 6/8, 1:30-3pm
Guest Speaker:  Christopher Trinchera
Topic:  Medical marijuana
RSVP?:  No.

St. Helena/Rianda House  (new group)
Thursday, 6/8, 3:30-4:30pm
Guest Speaker:  Barbara Brown, PT, physical therapist, St. Helena Hospital
Topic:  Importance of a PT’s expertise in a PD care plan
RSVP?:  No.

Fresno
Saturday, 6/10, 10am-noon
Guest Speaker:  Beate Ritz, MD, PhD, UCLA
Topic:  PEG (Parkinson’s, Environment & Genes) study at UCLA
RSVP?:  No.

Yuba City (Tri-Counties)
Monday, 6/12, 1-2pm
Guest Speaker:  Carly Pacheco, deputy director, FREED Center for Independent Living, Grass Valley
Topic:  FREED Center’s services
RSVP?:  No.

Gilroy
Monday, 6/12, noon-1:30pm (new time)
Program:  Listening to and discussing Michael J. Fox Foundation podcasts on sleep disturbances and urinary problems in Parkinson’s
RSVP?:  No.

Bakersfield
Tuesday, 6/13, 2-4pm
Guest Speaker:  Lin Zhang, MD, PhD, movement disorder specialist, UC Davis, Sacramento
Topic:  PD and the management of off episodes with Apokyn
RSVP?:  Yes to group leaders Linda Feist, 661-304-9227, or Bill Burgemaster, 661-343-2707

Pacific Grove (Monterey County)
Tuesday, 6/13, 3-4:30pm
Guest Speaker:  Katie Pietsch, SLP, speech therapist, CHOMP
Topic:  Think LOUD! – Speech and swallowing changes in PD
RSVP?:  No.

Palo Alto Young Onset Parkinson’s Group
Tuesday, 6/13, 6:30-8pm
Guest Speaker:  Helen Garvy, PD advocate and care partner
Topic:  Medical cannabis for PD
RSVP?:  Preferred, if this is your first time.  RSVP at least 24 hours in advance to Martha Gardner, group leader, email [email protected]

Turlock
Wednesday, 6/14, 1-2pm
Guest Speaker:  Robert McCulla, DDS, dentist
Topic:  Parkinson’s and sleep
RSVP?:  No.

Palo Alto/Avenidas
Wednesday, 6/14, 2-3:30pm
Guest Speaker:  Ellen Corman, manager, Farewell to Falls, Stanford Health Care
Topic:  Fall prevention in Parkinson’s
RSVP?:  No.

Sacramento/Arden Arcade
Thursday, 6/15, 10am-noon
Guest Speaker:  Lin Zhang, MD, PhD, movement disorder specialist, UC
Davis, Sacramento
Topic:  PD – more than motor symptoms
RSVP?:  No.

Walnut Creek (Mt. Diablo)
Saturday, 6/17, 9am-noon  (speaker 10:45am-11:45am)
Guest Speaker:  Nijee Luthra, MD, PhD, movement disorders fellow, UCSF
Topic:  Advances in treatment of Parkinson’s
RSVP?:  No.

Lincoln
Tuesday, 6/20, 10-11am
Guest Speaker:  Millie Nunez, PD cycling instructor, Sun City Lincoln Hills
Topic:  Nutrition and forced exercise
RSVP?:  No.

Auburn
Tuesday, 6/20, 1:30-3pm
Guest Speaker:  Stephanie Fiola, RN, AbbVie Pharmaceuticals
Topic:  Discovering Duopa – carbidopa/levodopa eternal suspension
RSVP?:  No.

Modesto
Wednesday, 6/21, 1:30-3:30pm
Guest Speaker:  Carlos Becerra, personal trainer, Alpha Fitness
RSVP?:  No.

Auburn (special bonus meeting at same location as regular meeting)
Thursday, 6/22, 6-7:30pm
Guest Speaker:  Robert Ghelfi, MD, Northern California Surgical Group, Redding
Topic:  Stem cell therapy for PD
RSVP?:  No.

Mill Valley (Marin County)
Friday, 6/23, 1-3pm  (guest speaker 1-2pm)
Guest Speaker:  Sue Weiss, RD, dietitian, Kaiser San Rafael
Topic:  Nutrition and Parkinson’s
RSVP?:  No.

Fremont
Monday, 6/26, 7-9:30pm
Guest Speaker:  Han Lee, MD, movement disorder specialist, Kaiser San Leandro
RSVP?:  No.

Short descriptions of four atypical parkinsonism disorders on MJFF website

Looks like this webpage on the four atypical parkinsonism disorders — CBD, LBD, MSA, and PSP — was recently created on the Michael J. Fox Foundation website.  (It wasn’t there in July 2016, when we became one of their partners.)  Here’s a link to the new webpage:

www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?atypical-parkinsonism

Below, I’ve copied the summaries of the four disorders from the short webpage.  In addition to these summaries, the webpage also discusses treatment for these diseases.

Robin
—————————–

Excerpts from

Atypical Parkinsonism
Michael J. Fox Foundation Webpage
Un-dated

Corticobasal Degeneration (CBD)
Corticobasal degeneration (CBD) leads primarily to motor and cognitive (memory/thinking) symptoms. Motor symptoms mainly affect one arm and/or hand and include:
* slowness,
* stiffness,
* myoclonus (rapid muscle jerks), and
* dystonia (an abnormal, fixed posture).

The dystonic posture may cause the arm to be held close to the body and bent at the elbow and the wrist and fingers to be flexed toward the palm. Dystonia can cause pain and palm sores and interfere with regular daily activities (such as brushing teeth or preparing meals). Cognitive problems can affect speech, memory and/or behavior. Brain-processing difficulties can make performing complex motions, such as combing hair or turning a key in a lock, challenging or impossible. People with CBD may also experience “alien limb phenomenon,” which is involuntary activity of a limb and a feeling that the limb is foreign or has a will of its own. (An alien hand could take one’s eyeglasses off after the other hand has put them on, for example.)

Lewy Body Dementia (LBD)
Lewy body dementia (LBD), also known as dementia with Lewy bodies (DLB) is a form of dementia associated with PD, typically occurring early in the course of disease. LBD involves motor symptoms of Parkinson’s (usually stiffness and slowness) and significant impairment of thinking and/or memory abilities that interferes with daily activities. Additional symptoms may include:
* visual hallucinations (seeing things that aren’t there),
* unpredictable fluctuations in levels of alertness or attention, and
* mood, behavioral and/or personality changes.

REM sleep behavior disorder, in which a person acts out his or her dreams, and orthostatic hypotension (a decrease in blood pressure when changing positions that can cause dizziness or lightheadedness) are other common symptoms.

Multiple System Atrophy (MSA)
Multiple system atrophy (MSA) patients may experience:
* parkinsonism — usually slowness, stiffness and walking/balance difficulties (rather than tremor);
* cerebellar symptoms — incoordination, imbalance and/or slurred speech; and
* autonomic nervous system dysfunction — problems with the body’s automatic activities such as blood pressure regulation, bladder emptying and sexual functions.

Other features of MSA include abnormal postures (head and neck tilted forward, hand held in a grasping position, or foot and ankle turned inward); speech and swallowing problems; episodes of uncontrolled laughter or crying (pseudobulbar palsy); cognitive (memory/thinking) problems; and sleep disturbances, including REM sleep behavior disorder (acting out one’s dreams) or sleep apnea (breathing pauses during sleep).

Progressive Supranuclear Palsy (PSP)
Progressive supranuclear palsy (PSP) causes imbalance, gait difficulties and a tendency to fall backwards. It also restricts normal eye movements, which can lead to reading difficulties, falls when walking down stairs and visual disturbances (blurred or double vision, or light sensitivity). Involuntary eyelid closure (called blepharospasm); memory and behavior changes (such as decreased motivation and emotional fluctuations); and speech and swallowing problems also may occur.

Urinary Problems in PD – Webinar Notes

The Michael J. Fox Foundation (michaeljfox.org) hosts webinars every third Thursday on various Parkinson’s Disease (PD) topics.  The April 2017 hour-long webinar was on urinary symptoms in PD.  The speakers addressed how PD affects the autonomic nervous system, including bladder functions; how urinary problems are diagnosed and managed; and the latest in research.

Certainly many in the Brain Support Network community cope with urinary symptoms.  During the webinar, alpha-synuclein is mentioned.  Both multiple system atrophy and Lewy body dementia are disorders of alpha-synuclein.

The webinar recording is available online here:

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=23&e=1389435&k=8EDACA15229E6F2DA1A8C61247716FDD

(You’ll need to register first to obtain access to the recording.)

Brain Support Network volunteer extraordinaire Denise Dagan listened to the webinar and took notes.  Her notes are copied below.

Sorry but the Fox Foundation doesn’t announce its webinar presenters in advance, and that information is not posted to its website.  So I’m unclear who all the presenters were.  One of the presenters is Dr. Maria De Leon, is a retired movement disorder specialist who also has Parkinson’s Disease.   Other presenters were Dr. Miyasaki and Dr. Juncos.  The moderator is always Dave Iverson, a journalist who has PD.

Robin

—————————–

Denise’s Notes

Urinary Problems in Parkinson’s Disease
Michael J. Fox Foundation Webinar
April 20, 2017

The Autonomic Nervous System Controls the Body’s Automatic Functions:
* Blood pressure
* Heart rate
* Temperature
* Digestion
* Sexual function
* Bladder control

Constipation can affect bladder control.  Urinary and sexual function are under treated because symptoms are attributed to aging, rather than to Parkinson’s disease.

Autonomic Problems are Common in Parkinson’s:
* Up to 80% of people with PD may experience an autonomic symptom during their disease course.
* Autonomic symptoms are likely due to the underlying disease process of Parkinson’s, but can be worsened by certain PD and other medications.
* The protein alpha-synuclein, which misfiles in PD, may play a role in autonomic dysfunction.

Alpha-synuclein not only collects in, and damages, the brain, but affects the periphery of the nervous system as well (ganglia and nerve roots of the autonomic nervous system) leading to the degeneration of those nerves.  Most of the symptoms caused by this degeneration can be managed, including by PD meds that treat motor symptoms.  Sometimes these meds make autonomic symptoms worse.  Tell your Dr. so he/she can adjust meds for best autonomic symptom treatment.

In general non-motor symptoms tend to cluster together.  Over time people accumulate more non-motor symptoms, including autonomic symptoms.  There needs to be a balance of symptom treatment with medications -vs- side-effects of those medications.

PD Urinary Problems May Include Difficulty Holding or Emptying Urine:
The bladder stores and empties urine.  In Parkinson’s, the brain’s control of the bladder is disturbed.
* Difficulty holding ruing may lead to:
— Strong urges to urinate
— Increased frequency of urination, especially at nighttime
— Accidental loss of urine (incontinence)
* Difficulty emptying urine could cause:
— Hesitancy when starting urination
— Weak stream
— Feeling of incomplete bladder emptying
* Difficulty holding and emptying urine can lead to urinary tract infections.

Dr. DeLeon initially experienced increased urgency.  10 years into her diagnosis she has discovered it is not one single factor causing bladder problems.  Not just worsening PD, or needing medication adjustment, but aging, diabetes, prostate enlargement, etc., comes into play.

Most common urinary symptoms in PD:
* Irritative symptoms – noctural frequency, daytime urgency, incontinence (leaking), daytime frequency
* Obstructive symptoms – hesitancy, poor flow, incomplete emptying
* Aging contributes to all of these symptoms.

How do you sort out what’s caused by PD and what’s due to aging, enlarged prostate, etc.?
* Best practice in diagnosis is building a multidisciplinary team to determine what is going on with the patient.
* Uro-dynamics is a test whereby the bladder is filled and its function is monitored.
– In overactive bladder any amount of content causes contraction, urgency, therefore frequency.
– In obstructive bladder there is difficulty in flow.  When caused by enlarged prostate, it can be treated with meds and/or surgery.
* Treatment begins with least invasive to more invasive.

Have an open conversation with your physician about urinary issues because most symptoms have a treatment if the cause can be determined.  Patients should not assume new urinary difficulties are associated with PD and/or aging, but mention it to your doctor and be persistent, especially if it becomes a quality of life issue for yourself or your caregiver/family.  Keep track of your urinary behaviors and symptoms to best help your doctor(s) determine the cause of your bladder and constipation issues.

(Dr. DeLeon found her constipation was causing bladder obstruction, so treating the constipation eased bladder issues).

Another issue is difficulty with movement impeding getting to the toilet in time, getting clothing closures undone in time, etc. due to increasing PD symptoms.

Listener question about his mother having frequent urinary tract infections.  In reply, an MD says incomplete emptying of the bladder is common in people with PD due to improper functioning of the bladder muscles, especially in older men due to enlarged prostate. Leaving urine in the bladder is the perfect medium for bacterial growth and resulting in frequent urinary tract infections (UTI). These can be treated with antibiotics, even chronic prophylactic antibiotics (although this puts you at risk of antibiotic resistance), and surgical intervention.  Elderly people can not realize they have a UTI, which can adversely affect PD symptoms, PD medications don’t work as well, and seem just as though they are having a bad day because the older you are the less prominent the symptoms of s UTI.  Systemic UTI (beyond the bladder) can cause confusion, hallucinations, and ER visits.  Because of this, UTI must be in the fore of your mind when and older person with PD is feeling under the weather.

Treatment Targets the specific Urinary System:
Difficulty holding urine
> Non-pharmacologic
– Pelvic floor exercises
– Limit fluids/caffeine, schedule bathroom breaks, use incontinence aids
> Pharmacologic
– Medication to relax the bladder
– Botulinum toxin injections

Difficulty eliminating urine
> Pharmacologic
– Medication to stimulate bladder emptying
– Evaluate current drugs to ensure none contribute (e.g., Artane/trihexiphenidyl)
> Non-pharmacologic
– Intermittent catheterization

* Consider seeing a urologist or other doctor with expertise in the urinary system to compete urodynamic testing and determine if symptoms are from Parkinson’s or other issues.

* Tracking symptoms can be useful in managing these problems.

Listener question: How do PD meds complicate urinary problems, particularly frequency?  MD answer:  Generally, PD meds do not cause bladder problems.  Used to use anti-cholinergics (for people with tremor), including Amantadine, which can result in urinary retention or inability to void.  Other meds for non-motor symptoms, like depression (Mertazapine) has anti-cholinergic affects, as well.

Also, low blood pressure during the day can result in having to get up frequently at night to pee because sitting and standing the kidneys don’t have high enough blood pressure to produce urine, and laying down at night increases blood pressure and allows kidneys to produce urine and fill the bladder.

How does one reconcile conflicting advice about staying hydrated to maintain blood pressure, and limiting fluids to compensate for difficulty in holding one’s urine?  Fluids help with constipation, which affects your ability to void.  After 6:00pm don’t drink a lot of fluids to minimize nighttime urination.

Dr. DeLeon contributes fluids are especially important during the hot months of the year, but during the daytime.  Also avoid caffeine, chocolate, and spicy foods which can all make you pee more often.

Pelvic floor exercises are often prescribed for women with respect to birth.  Try to stop the stream while you pee to find the muscles to exercise.  Don’t do this while you pee to prevent urine retention and UTIs.  Both men and women should do this exercise several times to a count of 10 throughout the day to strengthen pelvic floor muscles.  This prevents leakage and helps to void completely.

What medications can be helpful?
– What can be aggravating the situation so can be eliminated or modified to improve the situation, especially diuretics, opioids, amantadine, anti-cholinergics, calcium channel blockers.  Work with the physician team to adjust medications.
– Other medical conditions that can aggregate bladder symptoms, like BPHD, atrophic vaginitis, prior abdominal surgeries, how many children you have had, sleep disorders, diabetes, venus insufficiency, etc.
– Medications to help the bladder relax or minimize irritation and contracting before getting to the toilet.  These are anti-cholinergics but not those that stimulate the bladder.  There are many choices, like Detrol, or Vesicare, which has been studied on PD patients.  There are potential side-effects.  Beta3 receptor, Myrbetriq, works but may cause high blood pressure.
– Medications to improve emptying by relaxing the sphincter (Flomax, Rapiflow) and reducing the size of the prostate.  Some of these drop blood pressure more than others.
– In PD patients with motor fluctuations, minimizing OFF periods reduces urge to empty the bladder, especially when one cannot move well.

Dr. DeLeon commented about what’s been most helpful, personally. Many women tend to have greater risk of UTI and urgency from taking Azilect, but it helps her with pain so she has to find a way to work around balancing symptom treatment.  She was taking Myrbetriq and anti-spasmotic, but everything (even behavior therapy) only helps for awhile.  Dopamine can inhibit release of insulin and found she was becoming insulin resistant.  Even though she is not diabetic, she is on blood sugar medication, which stopped her bladder problems and she was able to stop taking Myrbetriq.

Dave asked Dr. Miyasaki about connection between blood sugar levels and bladder issues.  There is a close connection between the brain and the gut, including the pancreas.  Adding an endocrinologist to your care team is warranted.  PD patients have an increased risk of diabetes, statistically, but the reason is unknown.  Some diabetes meds increase kidney excretion of glucose resulting in urinary frequency.

Ongoing Research into Urinary Problems and Parkinson’s
* Trials are investigating the brain mechanisms involved in overactive bladder, as well as varied treatments.
> Medications = e.g., Melatonin
> Behavioral modifications = pelvic floor exercises, and Bladder routine/schedule
> Transcutaneous electrical nerve stimulation = Non-invasive stimulation of lower leg nerves through skin device.

Dr. Miyasaki agrees that starting with the least invasive treatments is wise.  Melatonin has multiple benefits to patients, especially for sleep.  It is difficult to determine the benefit of behavior modifications, but they are not harmful and can be beneficial so they are worth a try.  There are reports that transcutaneous electrical nerve stimulation help with both frequency and difficulty emptying.  People with PD can have a less common disorder where the sphincter of the bladder will not relax.  It can be quite painful and risks UTIs.  People who have had DBS report better sleep and less urinary frequency, especially at night.

Q&A
More questions about how much fluid and when it should be consumed?
8oz, 6-8 times daily until 6:00pm – depending on whether you are taking diuretics.

Any connection between bladder problems and development of kidney stones?
If you’re not able to void regularly you may develop kidney stones, but they have more to do with your body eliminating various minerals or whether you’ve had repeated infections.  If you are well hydrated, kidney stones shouldn’t be a problem.

Dr. Miyasaki feels strongly that your neurologist is connected with other specialists so each patient has a multidisciplinary care team, especially those who are interested in treating Parkinson’s disease within their specialty, like urology, and see a volume of patients to really develop an expertise in treating Parkinson’s patients overall.

Dr. Juncos doesn’t want people to forget Botox can be tremendously beneficial to urinary treatment (and other non-motor symptoms) in Parkinson’s disease and can be used repeatedly.  Also, men are offered prostate surgery to reduce urinary obstruction, but that will not treat the autonomic symptoms, so what level of benefit can they expect from the surgery?  Ask a lot of questions before you do the surgery.

Dr. DeLeon reminds people there are many treatment options for urinary issues and there is no reason to be embarrassed.  Bring it up with your doctor and be patient in determining the problem and treatment.  Keep the symptom diary for ALL PD symptoms.  It is infinitely useful in your own PD care.