Aug 2018, Speakers at Parkinson’s Support Group Meetings, Northern/Central Calif

In August 2018, some Parkinson’s support group meetings in Northern and Central California have guest speakers that may be of interest to those in the Brain Support Network community:

San Jose/Willow Glen
Friday, 8/3, 10am-noon (speaker begins about 10:15am)
Guest Speaker: Harvey Sackett, Esquire
Topic: Filing for Social Security disability benefits with a PD diagnosis
RSVP?: No.

Half Moon Bay
Friday, 8/3, 1-2pm
Guest Speaker: Jetta Van Hemert, PT, physical therapist, Half Moon Bay Senior Center
Topic: Rosen method and exercise for Parkinson’s
RSVP?: No.

San Andreas (Calaveras County)
Tuesday, 8/7, 10am-noon (speaker usually begins at 10:30am)
Guest Speaker: Bailey Freitas, SLP, speech therapist, Sonora Regional Hospital and other places
RSVP?: No.

Placerville
Tuesday, 8/7, 1:30-3pm
Program: Watch “Freezing or Sweating Falls When Walking with PD” webinar from the Parkinson’s Foundation
RSVP?: No.

Menlo Park/Little House
Wednesday, 8/8, 2-3:30pm
Guest Speaker: Ellen Corman, director, Stanford’s Farewell to Falls Program
Topic: Fall prevention in Parkinson’s
RSVP?: No.

Santa Rosa (Sonoma County)
Saturday, 8/11, 1-3:15pm (speaker from 1-2pm)
Guest Speaker: Diana Partovi, neuropsychologist, VA
Topic: Managing cognitive changes in Parkinson’s
RSVP?: No.

Tracy
Monday, 8/13, 10am-noon
Program: Dance for Parkinson’s demonstration class led by Rose, Dance for Parkinson’s representative
RSVP?: No.

Pacific Grove (Monterey County)
Tuesday, 8/14, 3-4:30pm
Guest Speaker: Jennifer D’Attilio, SLP, speech therapist
Topic: Parkinson’s Voice Project
RSVP?: No.

Palo Alto YOPD (Young Onset PD)/Stanford
Tuesday, 8/14, 6:30-8pm
Guest Speaker: James Lu, DPT, LAc, acupuncturist, Zhu’s Neuro-Acupuncture and Rehabilitation Center, San Jose
Topic: Scalp acupuncture for PD
RSVP?: Yes, if this is your first time attending. Please email group leader John Mamin, [email protected]

For meeting location and other details, see the Stanford Parkinson’s Outreach website.

 

“Watch Out for These Hidden Costs of Assisted Living” (Samada.com)

This is a terrific article on the *possible* “hidden costs” of assisted living.  It’s terrific because it is very detailed, listing all kinds of costs.
Robin
———————–
Watch Out for These Hidden Costs of Assisted Living

Here are additional charges that may not be included in the basic fee
By Kaya Laterman
Samada.com
May 2, 2018

Once you or loved one has made the decision that assisted living would be a good move, the next question is usually: How much will it cost? The national median cost for assisted living is $3,750 per month, but prices vary widely from state to state and facility to facility.

The way assisted living facilities break down their costs also differs from facility to facility. Many residences charge a basic fee, which includes rent, meals, housekeeping, access to activities and exercise. Then they will group additional services, like therapies and medication disbursement, into different payment tiers. Other facilities consider themselves all-inclusive, but may have add-on fees, which can increase a monthly bill by several hundred or even thousands of dollars.

Some facilities, after a periodic assessment, may either try to bump a resident’s payment plan up a tier or start charging more for added services. You are entitled to contest the additional services and fees as long as you can prove they are not needed, which may require the assistance of a geriatric care manager, social worker or other professionals who can attest to that.

It’s important to read the contract carefully and make sure the costs of all services are clearly indicated. Services that may incur additional fees can include:

Hygiene Costs

* Dressing. Fees can be split for dressing in the morning and undressing in the evening.
* Bathing. Fees may be different for full help with showering or having someone in the room while the individual showers.
* Bathroom/incontinence care. Some individuals may need help getting to and from the bathroom, sitting and standing, wiping, and changing adult diapers.
* Laundry

Medical Costs

* Health screening before moving in. Some facilities include this in their overall pricing upon move-in, but others many indicate it on the bill as a separate one-time charge.
* Medication management. Depending on the needs of the resident, staff may simply remind a resident to take his or her daily dosage, while other facilities will store and administer medications and record medication disbursement.
* On-site pharmacy or doctor access. Does the facility have a doctor or pharmacy onsite? You may be charged an additional fee for the convenience, disguised as a monthly “facility fee.” However, the services the doctor renders or the price of the prescription may be covered by Medicare or Medicaid.
* Treatment for temporary wounds or illness. Some facilities will tack on an additional fee for cleaning out and monitoring wounds from a fall or helping a resident get over a long-lasting flu.
* Blood pressure monitoring
* Blood glucose monitoring and insulin injections

Mobility and Other Care Costs

* Escort to and from the dining room or activity center
* Checking in on resident at regular intervals
* Reminders. This may include reminders to go to the bathroom every few hours or before bed, to take medication or to get to weekly activities and therapies on time.
* Use of gym or spa, if available on premises
* Transportation to area shops, doctor’s office
* Admission/Discharge. A one-time admissions fee may show up on bills under names like Service Initiation Fee or Community Service Fee. Also, look at the fine print in the contract for discharge policies to make sure you are entitled to a refund for prepaid services that were not used.
* Extra fee to deep-clean the bathroom. Hard to believe, but although most cleaning services are part of a standard monthly charge, some facilities may add on a deep-cleaning charge from time to time.
* Telephone

Other Hidden Costs

These are costs that aren’t charged by the assisted living facility itself, but ones that you or a loved one might incur as part of the transition to assisted living.

* Moving costs. Includes hiring a junk removal service, paying for movers and/or the costs involved in selling a house
* Travel expenses
* Lawyer or elder care manager fees

Kaya Laterman is a freelance reporter based in Brooklyn, N.Y.

“Sometimes Patients Simply Need Other Patients” (NYT)

This is a good article on the value of online patient groups:

www.nytimes.com/2018/07/09/upshot/sometimes-patients-simply-need-other-patients.html

The New Health Care
Sometimes Patients Simply Need Other Patients
Using the internet for a diagnosis is not recommended, but there’s great power in sharing stories.
By Aaron E. Carroll and Austin Frakt
The New York Times
July 9, 2018

Brain Support Network has a list of online groups for those coping with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration.

 

Eleven things “they don’t tell you about dementia” (Dementia Journey)

When Laurie Scherrer was diagnosed with early onset Alzheimer’s and frontotemporal dementia, she was told several things by doctors, including advice that she should get her affairs in order.  She writes about the eleven things she wished the doctors had said, including the idea that she could reduce confusion and agitation by observing triggers.

dementiajourney.org/2018/07/10/5589/

“How to bounce back from anything. Resilience can be learned.” (Healthy Living)

Someone in one of our local support groups shared this article about resilience with me recently. It applies to those coping with a neurological diagnosis.

The article addresses the four “simple skills” of super-resilient people:

* No matter what, choose to be a survivor.
* View every single setback as an opportunity.
* Go ahead and dote on yourself a bit.
* Don’t go it alone.

Robin
——————–

How to Bounce Back from Anything
Resilience can be learned: Here are the secrets of people who hang tough in hard times.
by Jancee Dunn

Healthy Living Magazine
Spring 2018

Why is it that some people can rebound from a difficult event, but others never quite seem to get their mojo back? While it’s true that resilience comes more easily to some of us, the good news is that anybody can learn to be more emotionally hardy. Super-resilient people, it turns out, do a few specific things right — and these are simple skills we can all pick up.

Secret No. 1
No Matter What, Choose to be a Survivor

When we face bad news, it’s hard not to jump to extreme conclusions. (“I’ll never work again!” “It’s definitely a tumor!”) But resilient people steer clear of this kind of catastrophic thinking, which ups stress levels, blocks purposeful action, and leads to a downward spiral. Instead, do what Nora Ephron recommended: “Be the heroine of your life, not the victim.” You can’t always control what happens to you — but you can control your attitude and actions.

Secret No. 2
View Every Single Setback as an Opportunity

The most resilient people realize that a setback such as a layoff, health scare, or conflict at home can be a challenge and a chance to grow, notes New York psychotherapist Jeffery R. Rubin, PhD, author of “The Art of Flourishing.” “Success is often an obstacle to learning,” he says. “When everything is going well, we continue to do what worked, so we don’t learn much. But a crisis can lead to a breakthrough.”

Secret No. 3
Go Ahead and Dote on Yourself a Bit

Physical health is a pillar of resilience. Before and during a crisis, it’s essential to have healthy habits like getting enough sleep, eating well, exercising, and avoiding mood changers like alcohol and other vices. Beyond that, yoga may be especially beneficial. In a 2012 study from Harvard Medical School, students who practiced yoga for 10 weeks were better able to calm themselves when upset compared with those who did a standard gym regimen. “Yoga promotes self-regulation, which is the ability to step back from a situation and not be reactive,” says Jessica J. Noggle, PhD, one of the researchers.

Secret No. 4
Don’t Go It Alone

Research has shown that socially isolated people have a more difficult time recovering from life’s challenges. “The more you hide your problem, the more power it has over you,” explains Bobbi Emel, a psychotherapist in Palo Alto, California. “Being around other people reminds you of who you are; they reflect that you’re still that same person.” That interconnection gives us strength to handle challenges by helping us develop a sense of belonging and purpose — which, when it comes to handling tough stuff, may be the most important component of all.

 

July 2018, Parkinson’s Support Group Meetings, Northern and Central California

Here’s a list of Parkinson’s support group meetings in Northern California and Central California in July 2018, where the guest speakers may be of interest to those in the Brain Support Network community:

Lodi
Monday, 7/2, 10am-noon
Guest Speaker:  Michelle Rosado, Disability Resource Aging for Independent Living (DRAIL), San Joaquin County
Topic:  Resources and device to help make daily living easier for those with challenges
RSVP?:  No.

San Andreas (Calaveras County)
Tuesday, 7/3, 10am-noon (guest speaker usually starts at 10:30am)
Guest Speaker:  Kenneth Renwick, MD, family physician, Calaveras County
Topic:  Medical marijuana for people with PD
RSVP?:  No.

Pacific Grove (Monterey County)
Tuesday, 7/10, 3-4:30pm
Guest Speaker:  Consuelo Juarez, patient advocate, Rare Patient Voice
RSVP?:  No.

Menlo Park/Little House
Wednesday, 7/11, 2-3:30pm
Guest Speaker:  Nikki Hochhauser, Home Instead Senior Care, Sunnyvale (servicing Belmont to Cupertino)
Topics:  Senior care options for those with PD, suggestions for hiring an agency or private caregivers, avoiding elder scams, and the 70/40 conversation rules
RSVP?:  No.

Sonoma/Vintage House
Thursday, 7/12, 10-11am
Guest Speaker:  Marie Held, SLP, speech therapist, Brookdale Home Health
Topic:  Speech therapy services for managing PD
RSVP?:  No.

Clovis (Greater Fresno)
Saturday, 7/14, 10am-noon
Discussion Topic:  Alternative treatments for PD
RSVP?:  No.

Lincoln
Tuesday, 7/17, 10-11am
Guest Speaker:  Rock Steady Boxing Roseville representative
RSVP?:  No.

Elk Grove
Wednesday, 7/18, 10-11:30am
Guest Speaker:  Deborah Gonzalez, speech therapist, Dignity Health
Topics:  Voice projection and swallowing
RSVP?:  No.

Merced
Thursday, 7/19, 10am-noon
Guest Speaker:  Kelly Lowe, therapeutic massage therapist, Merced
Topic:  Pressure points
RSVP?:  No.

Sacramento/Arden Arcade
Thursday, 7/19, 10am-noon
Guest Speaker:  Karen Low, SLP, speech therapist, Kaiser
Topics:  Voice projection and swallowing
RSVP?:  No.

Walnut Creek (Mt. Diablo)
Saturday, 7/21, 9am-noon  (speaker 10:45am-11:45am)
Guest Speaker:  Lena Hart, Alexander Technique instructor
Topic:  Redefining and finding balance with PD
RSVP?:  No.

Find meeting location details on the Stanford Parkinson’s Outreach website.

 

Nine brain donations in nine days! Amazing generosity towards medical research.

Brain Support Network has helped nine families succeed in donating a loved one’s brain….in nine days.  That’s an amazing display of generosity towards medical research from individuals and their families.  We thank every family and party involved.  That’s a record for us!

If you are interested in making arrangements for your brain donation or a family member’s brain donation, we encourage you to do so once hospice is involved.  Or once there’s been a major hospitalization.

See:
www.brainsupportnetwork.org/brain-donation

Robin

 

Using medical cannabis to treat PD – story of Frank De Blase

On May 9, a news station in Rochester, NY interviewed Frank De Blasé, a music writer, photographer and person with Parkinson’s. Frank says that Parkinson’s has hijacked his life causing him to think before he does anything — walking, talking, swallowing, even thinking!

Two physicians were also part of the news show — Frank’s movement disorder specialist, Dr. Michelle Burack, and the palliative care specialist who certified Frank to buy medical marijuana in the state of New York, Dr. Robert Horowitz. The interviews focus on the use of cannabis for Parkinson’s symptoms. In the end, Frank did not find cannabis helpful for his most bothersome PD symptoms but feels it has improved his sleep.

That’s probably enough for most of you. Read more if you are interested….

Robin

==============================

wxxinews.org/post/connections-using-medical-cannabis-treat-parkinsons-disease

Notes by Denise Dagan, Brain Support Network volunteer

Using Medical Cannabis to Treat Parkinson’s Disease
By Evan Dawson and Megan Mack
WXXI AM News Connections
May 9, 2018

This 51:27 minute audio recording is an interview by Evan Dawson, the host of Connections, a WXXI public radio production, in Rochester, New York. In this program from May 9, 2018, Evan’s guests are Frank De Blase, a music writer, photographer and person with Parkinson’s, Frank’s movement disorder specialist, Dr. Michelle Burack, and Dr. Robert Horowitz, the palliative care specialist who certified Frank for a medical marijuana card in New York.

In the beginning of the audio, Evan introduces his guests and tells listeners that Frank wrote an educational and entertaining article for the City Newspaper in Rochester, NY about the year he spent researching and experimenting with medical cannabis specifically to treat his Parkinson’s symptoms. So, I started by reading and summarizing that article. Then, I went back to listen to the interview. Here are some things that stood out for me:

Frank describes in the article his experience having Parkinson’s disease as: “…I don’t have tremors or cognitive difficulty…I’ve learned how to manage sharing the same body — my body — with PD. Its like having a 4-year-old roommate living inside me, with cloven hooves and ADD and who always wants to start a tickle fight.” He tells Evan that Parkinson’s has hijacked his life causing him to think before he does anything (walking, talking, swallowing, even thinking!).

Dr. Burack – medical cannabis is not FDA approved, but is regulated by the Drug Enforcement Agency (DEA) as a schedule I drug (with heroin & LSD). When New York State approved medical cannabis physicians felt it was a political move as there is no systematic scientific research to show its effectiveness for any medical use. There is some anecdotal evidence it can help Parkinson’s pain and uncontrollable muscle spasms, but not at all most Parkinson’s symptoms.

Dr. Horowitz – can certify a person qualifies for medicinal trial of cannabis at which time that person may purchase medical cannabis at a state approved dispensary. As it is not FDA approved it cannot be prescribed, therefore it will not be covered by insurance. Frank spent about $400 on various formulations to see if it would relieve him of any symptoms.

Dr. Burack – First, do no harm. As there is no systematic scientific evidence demonstrating the effect of cannabis on those with Parkinson’s, she only knows that with Parkinson’s there is loss of neurological redundancy and, therefore less ability to compensate for the effects cannabis may have. She cannot say if any individual with Parkinson’s will have severe effects from cannabis, like hallucinations or psychosis leading to falls or hospitalization.

One medication Dr. Burack prescribes for Parkinson’s disease has three molecular compounds within the one pill. Cannabis has over 100 molecular compounds.

Dr. Horowitz – To make it more complicated, each plant has different combinations of those 100 compounds. He has a 1/2 hour power point he shared with Frank to explain what is known and unknown about medical cannabis.

His experience is in palliative care for all types of illnesses. He is not a raving fan of medical cannabis, but is grateful to have it in his toolbox for some conditions. Sadly, improved sleep does not qualify someone for medical cannabis. He cannot certify someone for an ‘off-label’ use, meaning a use that is not specified on the NY state’s approved list of uses, or he can go to jail.

Cannabis is a lower risk for long term pain management than opioids, which is an approved use in NY. Dr. Horowitz has certified several people with hard to manage pain who are taking significantly lower doses of opioids along with medical cannabis. More study of medical cannabis is definitely warranted in this area.

Frank shared that without his Parkinson’s medications he wouldn’t be able to move, but with them he moves in a jerky fashion and has speech stutters. He has already had DBS surgery to some benefit. He hoped cannabis would compensate for the Parkinson’s medication side effects causing stuttering of his speech. Dr. Burack shared this hope.

He started with a tincture under his tongue to no effect, then tried vaping with a high THC content which made him high and caused problems with his Parkinson’s. Finally, he tried vaping with higher CBD and lower THC which helped him sleep, although that is not the effect he was looking for. He also got gummy bears from California with 100% CBD to no effect. He did not try any formulation for a sustained period of time. He only tried each for a week at a time so no effectiveness can be definitely determined.

Dr. Horowitz – certifies a person for trial up to one year and no longer. He sees that person periodically throughout that year. In NY there are only tinctures, vaping and tablets in THC to CBD ratios (20:1, 9:1 and 1:1), so only 9 products. The tincture is, apparently, nasty.

A caller tried medical cannabis high dose CBD capsules for nerve pain, rheumatoid arthritis, shoulder pain and leg muscle cramping with tremendous relief. She had been getting repeated cortisone shots at a pain clinic who could not certify her for medical cannabis. She got similar rejection from her rheumatologist. Her chiropractor sent her to Dr. Broadwell with her medical history, who certified her. NY State’s medical marijuana website for those who are certified to get an appointment to purchase cannabis products cannot use Safari as a web browser. Firefox works well. Once she figured that out it was not an arduous process. Frank also found that once they found someone registered with the state to certify patients for medical cannabis use, the process is pretty easy.

29 states and DC have legalized medical marijuana and 9 states and DC have legalized recreational marijuana. Frank believes the gross sales are so high that marijuana will become legal federally, eventually.

Dr. Horowitz – says there are several obstacles to studying medical marijuana but none of those will be overcome as long as it is still a schedule I drug with heroin and LSD.

Dr. Burack – says individuals really should test various medical cannabis formulations for longer than a couple doses and by controlling as many factors as possible to really determine what, if any, effect is found. Not as many research dollars and medical attention is given to cannabis because there is so much hassle involved legally with so little potential return as compared to other, more easily studies substances and potential treatments with great potential return.

“Affordable Options for Grocery Delivery”

Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology.  In their January 2017 issue, they address the challenge that many with neurological disorders have of getting to the grocery store.  Sometimes it’s more practical to have groceries delivered.

Brain & Life magazine investigated these options:

* houses of worship
* Supplemental Nutrition Assistance Program (food stamps)
* Meals on Wheels
* food banks
* online shopping

The full article can be found here:

https://www.brainandlife.org/the-magazine/article/app/13/6/10/affordable-options-for-grocery-delivery

Affordable Options for Grocery Delivery
by Frank Kritz
December/January 2017
Brain & Life

Robin