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.

 

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.

 

Pain and Fatigue in Parkinson’s – Webinar Notes

The Michael J. Fox Foundation (michaeljfox.org) hosts webinars on the third Thursday of every month.  Lately they’ve been re-broadcasting recordings of previous webinars.  Last Thursday’s webinar was a re-broadcast of a July 2016 webinar on Parkinson’s pain and fatigue.

There is often fatigue in all of the disorders in the Brain Support Network group, and many of our community members experience pain. Listening to the webinar recording may be worthwhile for many.  The only information that will NOT be relevant to most of you is the info about off-periods caused when Parkinson’s medications wear off.

You can find the recording online here:  (you’ll have to register first)

https://www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Here are two highlights from the question and answer session:

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Brain Support Network volunteer Denise Dagan listened to the re-broadcast last week and has shared notes.

Robin

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

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Notes by Denise Dagan, Brain Support Network volunteer, May 2018

Parkinson’s Pain and Fatigue
Webinar by Michael J. Fox Foundation
July 21, 2016

Speakers:  Julie Pilitsis, MD, PhD, Adolpho Ramirez-Zamora, MD, and Toni Palumbo, person with Parkinson’s

PAIN

More than 75% of people with PD may experience pain.  Pain in PD can come from:
– Muscle rigidity and slowness
– Dystonia (muscle cramping)
– Constipation and bowel pain
– Musculoskeletal pain
– Central pain (burning sensations and sharp bursts of pain)
– Dyskinesia (involuntary movements)

Pain is as common in Parkinson’s as other non-motor symptoms.  Pain can be one of the earliest symptoms and the source is sometimes mis-diagnosed before tremor and/or gait and balance symptoms present to be able to diagnose PD and associate the pain as a PD symptom.

Pain can be exacerbated by stress, over exertion or illness.  The degree to which someone experiences pain varies by individual perception, medication effectiveness in controlling motor symptoms (on/off periods).  Dystonia during off periods (when medications are wearing off) can be painful.

Dyskinesia begins after 5-7 years of PD medication treatment and can be painful.

Pain is one of the most under treated symptoms of PD.

Talking to your physician (start with your neurologist) about your type of pain can direct treatment.  Discuss the location, feeling and duration of your pain to understand the root cause and target treatment for best chance of relief.
– Your doctor may add, reduce or change dopamine medication dose and type
– Anti-inflammatories, painkillers, opioids (as a last resort as it is constipating) and antidepressants may help manage pain
– Non-pharmacological methods include:
Exercise
Massage
Relaxation techniques (e.g. hypnosis, mindfulness, tai chi, yoga)
Acupuncture
Heating pad or cold pack

Start with your neurologist but you may need a team approach to manage pain as you determine the mechanism causing the pain or eliminate through one physician at a time where the pain does NOT originate.  You may need to move on to a gastroenterologist, orthopedist, urologist, other specialist or chronic pain management clinic.

There is concern with drug interaction in PD because there may already be a cocktail of meds prescribed just for the PD symptoms and adding more to treat pain is worrisome and could result in under treatment.  Depending on the source of the pain doctors can start with NSAIDs, and physical therapy which may include heat, massage, and exercise.  Of course, excruciating pain needs to be treated more aggressively and immediately.

Toni has been diagnosed for 12 years so treats pain more aggressively, including botox injections for dystonia.  She uses painkillers (not opioids) and finds hot tub, tai chi, boxing and socialization most helpful for pain.  The movement disorder specialist advises Toni on all over the counter meds and supplements before taking them to avoid medication interactions.  Toni finds boxing class + an hour of bike riding is too much and causes pain. Her movement disorder specialist helped her find a good exercise balance to avoid pain.

FATIGUE

Fatigue is another challenging non-motor symptom of PD.  Fatigue: Overwhelming sense of tiredness, lack of energy, and feeling of exhaustion that interferes with normal function.
– Estimates vary, but up to 70% of people with PD may experience fatigue
– Parkinson’s fatigue eases with exercise and activity
– Fatigue may be associated with:
Early sign of PD
Prolonged disease duration
Increased disease severity
Depression, anxiety and apathy
Sleep disturbances
Off episodes

Toni describes fatigue as being very close to apathy, as she can wake from a good nights sleep with fatigue.  She battles fatigue days by walking her dog every 20 minutes for 10 minutes, just to get up, moving and motivated.

Fatigue in PD is extreme exhaustion which cannot be explained by effects of or lack of medication, lack of rest, lack of sleep. Fatigue is improved with exercise and good medication management as it can be worse during off times.  Whereas, apathy in PD is a lack of drive to do things one normally particularly enjoys doing.

Fatigue can increase one’s experience of pain and short temper.  Any type of exercise will reduce fatigue (boxing, cycling, etc.), especially if you exercise together as socialization can distract from pain and fatigue.

Interventions and planning can help manage fatigue.  Doctors may adjust or stop medications or may prescribe other medications:
– Wakeful-ness agents
– Stimulants
– Antidepressants

Non-Medication interventions:
– Exercise
– Socialization
– Daily scheduling: planned rest and pacing of activities
– Vitamin supplements: vit. B, iron, folate and magnesium
– Lifestyle changes: caffeine, alcohol and tobacco reduction

You should discuss any supplements you take with your doctor as some can be toxic at certain levels, cause nerve damage and have other adverse effects.  Your physician should do blood work prior to recommending you take B complex or other supplements which can treat symptoms, including pain.

Caffeine has been studied in reducing fatigue in PD, but found to be ineffective.  It has also been tested in treating daytime sleepiness with inconclusive effects.  If you take too much caffeine or have clear worsening of fatigue when caffeine is out of your system you need to reduce caffeine and increase exercise.

QUESTION AND ANSWER

Q. How is DBS (deep brain stimulation) useful for treatment of pain?
A. In general, after DBS in the sub-thalamic nucleus people report a reduction of pain associated with movement.  (In 2016 they did not) know how long this effect lasts.  Perhaps existing DBS can be adjusted in order to treat pain.  As of 2016 animal trials were under way to learn more about this.

Q. Please provide a better definition of “off-time.”
A. The longer you have PD you are more likely to experience this more frequently.  On is when your medication is effective.  Off is when your medication has worn off.  As you take PD medications over many years, it wears off sooner and sooner, causing more off times and resulting in needing to take medications more frequently throughout the day.  There are newer medications and medication formulations to combat this effect.

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What do we know about medicinal marijuana?
A. Marijuana has compounds that we thought can be helpful in PD, especially in dyskinesia and tremor although recent studies have not shown this. Concern about potential side effects, particularly with respect to cognition and falling are very real.  We don’t know how marijuana could affect fatigue because only stimulants have been tested for fatigue.  Marijuana has the opposite effect so it hasn’t been studied for fatigue.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Q. What is the effect of alcohol on fatigue?
A. As with caffeine, moderation is the key.  If you’ve spoken with your neurologist and determined it is fine, then fine.  If you are using alcohol to sleep you have a problem because alcohol should not be self medication.  Caffeine is the same, if you need it for wakefulness it will only cause you more fatigue and probably more pain.

Q. How do you determine what kind of pain you are experiencing?  It could be normal aging or a PD symptom.  Is it important to distinguish?
A. It is important to distinguish.  In the past we didn’t think pain was part of PD.  Neurologists thought of PD as exclusively a motor disorder, but now we know there are many non-motor symptoms, including pain.  Sometimes, it is very difficult to tell the cause of pain.  Most of the time the source is multi-factorial (has many causes).  It can be medication effect in addition to orthopedic or arthritic.  An in-depth discussion and complete history can help your neurologist to guide you to the most probably cause and most effective treatment.  Be persistent!

Q.  What do we still need to know about pain and fatigue in PD?
A. Treating pain and fatigue must know the mechanisms causing pain from the brain out into the body.  It would be great if we could have biomarkers and specific measures to determine if inflammation, neurologic sources, or others are the source of pain so we can target treatment.

Q. What do you recommend people do approach treatment of pain and fatigue?
A. The best thing is to have an open dialogue with yourself, your family and your doctors to determine what is contributing to pain and fatigue.  We sometimes don’t realize what stressors are contributing to worsened PD symptoms.  Socializing and exercising need to be as much a part of your treatment as medications, diet and sleep.

“A Parkinson’s Life and a Caregiver’s Roadmap” – Book Review

The Northwest Parkinson’s Foundation (nwpf.org) has a community blog. Recently a blogger named Pete Beidler reviewed a book by Jolyon Hallows titled “A Parkinson’s Life and a Caregiver’s Roadmap.” In the book, Jolyon describes his journey with his wife Sandra, who lived with Parkinson’s Disease for 20 years. The third part of the book is focused on caregiving.

The reviewer describes the third part this way: it “draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on. … Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: ‘laughter is not disrespectful’.”

You might enjoy reading this book. If you do, please share what you learned. And consider donating the used book to our local support group’s lending library.

Robin

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

nwpf.org/stay-informed/blog/pete-beidler-reviews-jolyon-hallows-a-parkinsons-life/

Northwest Parkinson’s Foundation
PD Community Blog, May 17, 2018
Pete Beidler Reviews “A Parkinson’s Life”

A Parkinson’s Life and a Caregiver’s Roadmap, by Jolyon E. Hallows. Burnaby, British Columbia, Canada: WCS Publishing, 2018. 225 pp.

In his Afterword to “A Parkinson’s Life and a Caregiver’s Roadmap,” Jolyon Hallows confesses to a certain uncertainty of purpose: “When I started writing this book, my motivations were unclear. It seemed important to me, but I wasn’t sure why” (185). By the end he seems to have found clarity of purpose. He wanted his readers to know what a Parkinson’s marriage is really like, both for the one with the disease and for the caregiving spouse.

Hallows divides his book into three parts. Part I, Prelude, gives the history of the author’s and his wife Sandra’s life together before she receives her diagnosis, and it describes the basic facts about Parkinson’s disease and the various treatment options for people who have it. Part II, Living with Parkinson’s, gives a mostly chronological account of the progression of Sandra’s disease and her husband’s increasingly desperate efforts to care for her. Part III, Caregiving, draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on.

Hallows is an excellent writer. He has a rare gift for explaining complicated concepts in simple language. What does a dopamine neuron do? Hallows explains it this way:

“Let’s say you pass a storefront in the mall and you see something in the window that interests you. Do you go into the store to examine it or do you move on? It all depends. Do you have the money? Is there someone waiting for you at the coffee shop? Are you in a hurry? Do you really need, or want, whatever this is? The evaluation of each alternative—to go into the store or to move on—is one of the things the dopamine neurons provide. They help us choose.

But what happens when the signals fail? In that case, there’s nothing to tell the brain what to do. So, lacking direction, it does the logical thing—it freezes,” (19–20).

Why can’t we get artificial dopamine into the brain to replace the natural dopamine that the brain has stopped making? Hallows elaborates:

“The brain is persnickety. It doesn’t tolerate some of the stuff the bloodstream carries, so it’s protected by something called the ‘blood-brain barrier,’ which acts like a security guard in an exclusive gated community, keeping out the riffraff. Among the many substances that can’t cross the barrier is dopamine. You can take all of it you like, but none of it reaches your neurons. . . . Enter levodopa,” (32).

A Parkinson’s Life and a Caregiver’s Roadmap is not about malls, of course, or coffee shops, or gated communities, or riffraff, but Hallows uses these familiar concepts to help us to understand unfamiliar terms like dopamine neurons, blood-brain barriers, and freezing.

One of the attractive features of Hallows’s writing is his sense of humor. When he introduces levodopa, for example, he quips, “No, levodopa is not curt advice to someone married to a dullard” (32). Get it, leave-a-dope? Another example: when Hallows’s wife Sandra has deep brain stimulation surgery, he has to learn how to use the control stimulator: “I showed the stimulator to Sandra’s sister Vivian and boasted I could now turn Sandra on and off. She said it was a sorry excuse for a man who needed an electronic device to turn his wife on,” (78). Toward the end of the book Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: “laughter is not disrespectful” (183).

One of the most striking features of “A Parkinson’s Life and a Caregiver’s Roadmap” is its honesty. Sandra lives for more than two decades after her initial diagnosis. During those decades she grows less and less able to do the things she had always enjoyed: her work as a nurse, her driving, her ability to travel, her ability to take care of herself, her independence. It would perhaps have been possible for Hallows to report Sandra’s losses in positive terms as gains in love or devotion or knowledge or humility, but Hallows does not do that.

He focuses squarely on the disabling features of the disease: “In the final stage of the disease, the person is bedridden and needs help in all areas of his or her life including getting dressed, eating, and personal hygiene” (26). Hallows tells us that he has to brush Sandra’s teeth, help her get on and off the portable bedside commode, wipe her, give her sponge baths in bed, help her put her panties and bra on, and so on. Nor does he sugarcoat the unpleasantness of the disease for both of them by promising a cure: “Parkinson’s is far more complex than researchers had suspected and. . . . it will be a long time before there’s a cure on the horizon” (20). Furthermore: “This prolonged research is expensive—one source cites over a billion dollars and ten to twelve years to bring a new treatment to market. . . . So even if researchers find a real cure, it will take years to prove it” (28).

The medications and surgeries that are now available have helped many Parkinson’s patients, but they can help for only so long: “Medications have given generations of Parkinson’s patients extended time and a better quality of life, but there’s only so much they can do in the face of the disease’s inexorable progress,” (34). When Sandra dies, Hallows tells readers that “Sandra put up a valiant fight against her Parkinson’s. But it’s not a fight anyone ever wins” (181).

Should you read this book? That depends. If you want to know the grim facts about what probably lies ahead for people with Parkinson’s and for those whose lot it is to care for them, “A Parkinson’s Life and a Caregiver’s Roadmap” is a good choice. If you remember always that Parkinson’s follows a different trajectory for each person and that no single “roadmap” will work for all caregivers, then Hallows’ book can help you to anticipate and plan ahead for some of what probably lies in front of you. As you come to terms with the disease and with its almost inevitable downward progression, you may find solace in learning from this book that you are not alone.

Pete Beidler has read and reviewed many books about Parkinson’s disease. Parkinson Pete’s Bookshelves: Reviews of Eighty-Nine Books about Parkinson’s Disease (Coffeetown Press, 2018, ISBN 978-1-60381-746-2) can be purchased here.

Daily caregiving balancing act – how much to help?

Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology.  In the most recent issue, they have a good article on caregiving.  Here’s an excerpt:

“As many caregivers know, offering just the right amount of help can be challenging and stressful for both sides, and requires time and communication. And even after striking the right balance, the needs of the person being cared for may change, requiring caregivers to recalibrate.”

Here’s a “caregiving rule” suggested by a nurse practitioner in the article:

“Dr. Resnick has what she calls a three-time rule: A caregiver allows a patient three tries at a task before stepping in. If the task is putting on a shirt, Dr. Resnick will do one step, perhaps helping the patient put on one sleeve, and then step back. If getting the button secured is the next challenge, she breaks down the action and allows the patient to try again. If the patient is truly not up to a task, Dr. Resnick suggests working together to accomplish it, for example, by placing a patient’s hands over your own as you perform an action.”

Here’s a link to the full article:

www.brainandlife.org/the-magazine/article/app/14/2/20/in-the-balance-knowing-how-much-to-help-is-a

In the Balance
Knowing how much to help is a daily challenge for many caregivers. Our expert advice can help you find that sweet spot.

by Natalie Pompilio
April/May 2018
Brain & Life

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.

Frank De Blase reports that medical cannabis did not help his Parkinson’s symptoms

This is an April 2018 Rochester, NY newspaper article by Frank De Blasé, well-known music writer, photographer and Parkinson’s patient.  For a year, he researched medical cannabis in New York state and its possible benefit for Parkinson’s Disease (PD) symptom treatment, testing it on himself, of course.  He reports that medical cannabis offered no help for his PD symptoms.

www.rochestercitynewspaper.com/rochester/parkinsons-cannabis-and-hope/Content?oid=6235237

“Reframe Your Experience” (with a neurological disorder)

This recent blog post on the seven key steps to take after a Parkinson’s diagnosis doesn’t really have much that’s new.  However, I liked step #7, titled “Reframe Your Experience.”  That step is worth sharing because it applies to all of us — whether we have a neurological diagnosis (not necessarily Parkinson’s) or a family member with a neurological diagnosis.

Here’s #7 — “Reframe Your Experience”:

In addition to getting support, thinking positively can help you come to terms with your diagnosis. One of [neurologist Dr. Melita] Petrossian’s patients has taken to viewing Parkinson’s as a friend (he calls him “Mr. P”), while others repeat mantras like, “I have Parkinson’s, but Parkinson’s doesn’t have me.”  Petrossian acknowledges that this approach may feel a little cliched or trite, “but having a mantra that recognizes your struggle without diminishing who you are and without overemphasizing the role Parkinson’s plays in your life can help you cope and become more resilient.”  [Another of her patient’s said]:  If you live with Parkinson’s, “you have to recognize that you have to play a different game, you have to change the rules of the game.” In other words, [Petrossian] says, “you have to re-imagine your life.”

The full blog post is copied below.

Robin

——————–

www.seniorhomes.com/w/7-key-steps-to-take-after-a-parkinsons-diagnosis/

7 Key Steps to Take After a Parkinson’s Diagnosis
by Katherine O’Brien
SeniorHomes.com
April 26th, 2018

Finding out you have Parkinson’s disease, a progressive brain disorder characterized by tremors and changes in speech and gait, is a hard pill to swallow.

There’s a lot to take in, and it can be incredibly overwhelming not only for the person with the diagnosis, but for their family. But with more research into the disease now than ever before, there are a number of smart strategies you can take to help slow down the disease’s progression, allowing you to live life to your full potential.

1. Connect With a Neurologist
Step number one: Ask your primary care doctor to refer you to a neurologist, preferably one who is a movement disorders specialist. Patients who work with neurologists tend to have better results than those who don’t, says Melita Petrossian, Director of the Pacific Movement Disorders Center in Santa Monica.

But don’t just take her word for it—this study published in the journal Neurology shows that patients treated by neurologists may live longer and are less likely to be placed in a nursing home or to break a hip. Even if you can only get to a specialist once a year, it can still can help, says Petrossian. Another option for those who live far from major medical centers: video conferencing.

2. Find Meds That Work for You
Although there’s no cure for Parkinson’s yet, medications can often dramatically help control symptoms. Do be aware that PD drugs can produce significant side effects like involuntary movements. Additionally, you must take meds exactly as directed to avoid side effects such as gait freezing, unpredictable incidences of being unable to move or keep moving.

Another caution: keep your protein and fat intake in check, as too much of either can interfere with your body’s ability to absorb Parkinson’s medication. If medication doesn’t adequately control your symptoms, deep brain stimulation, which involves the implantation of electrodes in the brain, is another–albeit riskier—option.

3. Participate in Research
Taking part in clinical trials — particularly those seeking treatments to slow or stop disease progression – is a direct way to contribute to finding a cure for PD. “I support patients enrolling in clinical trials because there is a tremendous amount of work left to understand Parkinson’s disease and how to prevent it,” says Dr. Karl Dhana,” Senior Vice President of Medical Affairs at MorseLife Health System in Florida. “We need to continue to develop new and more effective treatments for Parkinson’s which will hopefully lead to a cure.”

4. Get Moving and Keep Moving!
Exercise is another key way to manage Parkinson’s. “All the research shows that the earlier you get on a very Parkinson’s-specific exercise routine, the better it goes for your long-term quality of life,” says physical therapist Brian Keenoy, who treats PD patients at the Generation Care rehab facility in Michigan.

Several exercise programs have been specially designed for people living with Parkinson’s, including Rock Steady Boxing and Dance for PD. Keenoy says that dancing is a good choice for people with the disease, as it involves conscious and purposeful movement that increases the brain-body connection.

Both dancing and Tai chi, another exercise that involves conscious movement, can also improve your balance and reduce your risk of falling. “When you have Parkinson’s, you can’t correct yourself when you lose your balance because the disease decreases how quickly you can move to steady yourself,” says Dhana. In addition, he notes that Parkinson’s and PD medications cause blood pressure to drop in patients when they stand up, sometimes leading to light-headedness and dizziness, which also increases the risk of falling.

5. Manage Your Mood
As with many diseases, managing your mood is a fundamental part of the rehabilitative process. Keenoy, who encourages his patients to do one thing every day that brings them joy, notes that patients who feel depressed may abandon their exercise routine (the loss of dopamine-producing cells in people with Parkinson’s also affects motivation.) In addition, depression can also exacerbate the symptoms of Parkinson’s. As Dhana points out, “if someone is anxious and nervous, it can make the tremors worse.”

Petrossian believes that the emotional response to Parkinson’s can sometimes be more devastating than the physical symptoms. “The bigger issue I see is that a lot of people with Parkinson’s have anxiety and depression, which goes beyond just stress, and I think those need to be addressed, sometimes with cognitive behavioral therapy and sometimes with medication,” she says.

6. Seek Out Support
“Part of the problem for someone just diagnosed with Parkinson’s is a sense of isolation and bewilderment, a sense of identity loss,” Petrossian says. One way to counter the isolation and to adjust to living with Parkinson’s is through peer support. (You can find local support groups—including the PRESS Program for recently diagnosed PD patients— on the American Parkinson’s Disease Association website.)

“Parkinson’s is a progressive neurological disorder, and if you take that on yourself…it can be a little daunting,” says Keenoy, who encourages his patients to build strong social networks. “You’re not the first person diagnosed with Parkinson’s where you live, and so you don’t have to figure it all out on your own,” he says.

7. Reframe Your Experience
In addition to getting support, thinking positively can help you come to terms with your diagnosis. One of Petrossian’s patients has taken to viewing Parkinson’s as a friend (he calls him “Mr. P”), while others repeat mantras like, “I have Parkinson’s, but Parkinson’s doesn’t have me.”

Petrossian acknowledges that this approach may feel a little cliched or trite, “but having a mantra that recognizes your struggle without diminishing who you are and without overemphasizing the role Parkinson’s plays in your life can help you cope and become more resilient.”

In contrast, one of her patients told her that having Parkinson’s means he will “never hit a ball out of the park,” no matter how hard he tries. At the time, Petrossian, who was “blown away” by his “devastating way of thinking about life,” didn’t know how to respond. “How do you get up every day and exercise and everyday try to be positive when you are constantly feeling like you are in a losing battle,” she says.

Later, another patient gave her the answer: If you live with Parkinson’s, “you have to recognize that you have to play a different game, you have to change the rules of the game,” Petrossian says. In other words, she says, “you have to re-imagine your life.”

For his part, Keenoy is adamant that people living with Parkinson’s can live a full life. “I’ve seen individuals come in pretty bummed out because they’ve just got a really big diagnosis, but after you give them tools, they realize they can adapt things so that they really enjoy their life,” he says. “I believe one-thousand per cent that people with Parkinson’s can live a long fruitful, joyful, high-quality life.”

“Marijuana and PD: What Do We Really Know?” – Webinar Notes

The Parkinson’s Foundation (parkinson.org) conducts occasional webinars on Parkinson’s Disease (PD).  Recently, it hosted a very thorough webinar on marijuana and PD.  The speaker was Dr. Benzi Kluger, a movement disorder specialist in Colorado, which legalized recreational marijuana a couple of years ago.

You can download the speaker’s slides here:

http://parkinson.org/sites/default/files/B.Kluger_Slides%20FINAL%28cgm_lh%29.pdf

And you can watch the hour-long recording of the webinar here: (requires registration)

http://event.netbriefings.com/event/pdeb/Archives/marijuana/register.html

Brain Support Network uber-volunteer Denise Dagan listened to the webinar and took excellent notes.  See below.

Robin

———————-

Notes by Denise Dagan, Brain Support Network Volunteer

Marijuana and PD: What Do We Really Know?
Parkinson’s Foundation Expert Briefing Webinar
April 17, 2018

Speaker: Benzi M. Kluger, M.D., M.S, movement disorder specialist, University of Colorado Hospital

Learning Objectives:
* Define cannabis, cannabinoids and endocannabinoids
* Review the basic science of the potential of cannabinoids to affect Parkinson’s and other movement disorders
* Understand the current state of the evidence of cannabinoids as a treatment for Parkinson’s
* Know the most common side effects of cannabinoid-based therapies
* How he works with patients in using cannabinoid products for medical use.

Outline:
What is cannabis, cannabinoids and endocannabinoids?
How does cannabis effect the nervous system?
Do cannabinoids improve motor or nonmotor symptoms in PD?
Can cannabinoids slow down the progression of PD?

What is cannabis, cannaboinoids and endocannabinoids?
* Cannabis is a genus of flowering plants including sativa (higher THC), indica and ruderalis (higher CBD).
* Cannabinoids are chemicals that act on cannabinoid receptors in the nervous system and other tissues.
* Synthetic cannabinoids are man-made and very targeted, phytocannabinoids (now over 100) come from the cannabis plant. Endocannabinoids are produced by neurons and other tissues – analogous to the endorphins system in the body.

Phytocannabinoids:  D9-tetrahydrocannabinol (THC)
– Primary psychoactive component of cannabis
– Higher concentration in Sativa strains

cannabidiol (CBD)
– May have more calming effects on the nervous system
– Significant interest in medical research (particularly epilepsy)
– Higher concentration in indica and ruderalis strains

Anadamide
– name means ‘bliss’
– Discovered in 1992
– May play a role in pain, sleep, stress response and other behaviors as well as development.  Most research done on adolescents and young animals so we don’t know much about its effects on adults, especially older adults.
– Also found in chocolate (why we crave chocolate?)

Synthetic Cannabinoids
* Marinol (dronabinol): THC developed to treat nausea and appetite in cancer
* Nabilone: Cannabinoid Receptor 1 and 2 agonist
* K2 and Spice
– legal alternatives to cannabis
– have been associated with adverse health effects and hospitalizations (avoid these!)

How does cannabis effect the nervous system?
* It slows response and reaction time.
* It reduces dopamine reception.

The Endocannabinoid System
* Cannabinoid Receptor 1 (CB1) and 2 (CB2)
* CB1 primarily in the central nervous system and CB2 in immune system
* Endocannabinoids act on the presynaptic neuron to decrease neurotransmitter release at CB1 receptors
* Tend to increase GABA and decrease Glutamate and Dopamine release in the basal ganglia

Action of Cannabinoids
* Agonist, antagonist and partial agonist at CB1 receptors
* Antioxidant and anti-inflammatory effects
* CB2 on microglia (the primary immune cells in the brain)  Research into slowing progression of PD in the brain.
* CB independent effects. Other receptors (adenosine A2A is acted on by caffeine)

Do cannabinoids improve motor symptoms in PD?  No.

Animal Models
* Published studies generally support motor improvement but effects are mixed as are mechanisms.  Cannabinoids have actually induced PD symptoms in animals.
* CB1 antagonists (blocking CB1 receptors) are most consistently helpful probably through non-dopaminergic mechanisms.
* Both CB1 agonists and antagonists have been reported to improve dyskinesias.

Clinical Reports and Trials
A survey of 339 PD patients : 25% reported using cannabis, 46% described some benefit, 31% reported improvement of rest tremor, 45% of bradykinesia, and 14% of LID
* In US, 207 PD patients:  only 5% reported using, and most reported benefit only for non-motor Sx (pain, sleep, appetite, anxiety, muscle stiffness)
* All randomized controlled trials to date have been negative (inconclusive).  There are 100 phytocannabinoids, but these trials picked only 4.  Small number of participants so harder to see trends and rule out placebo effect.
* Recent Israeli study showed benefit, but also flawed study.
* Current study has worked out some of the study flaws so may show good results on effect of CBD in PD.

Do cannabinoids improve nonmotor symptoms in PD?  Yes.

Clinical Reports
* No randomized controlled trials
* Some case series report benefit for REM Behavior disorder and psychosis
* Colorado experience suggests benefit for appetite, nausea, pain, anxiety and sleep, muscle spasms & spasticity, depression (chronic cannabis use increases risk for depression)
* Web based survey made associations between cannabis and better memory, although all participants were young.

Most Common Side Effects
Cognitive (dopey), depression, apathy
Dizziness
Low Blood Pressure
Smoking may increase risk for cancer or other pulmonary issues so use vaping, edibles to avoid this
Edibles may have less predictable absorption and dosing, eating too much because effects kick in later through digestion
Risks – children and animals getting into cannabis products.

Can cannabinoids slow down the progression of PD?  No.

Preclinical Models
Most published studies suggest neuroprotective effect in toxin-based models
Mechanisms may include anti-inflammatory and microglia effects
Most studies suggest cannabinoid receptors are not involved
No data in people

Speaker works with patients using cannabis for medical purposes.  He does not write a prescriptions.  He fills out paperwork so patients can get a license to buy marijuana.  In other states it may work differently.  There is no regulatory body saying 10% CBD will be the same across dispensaries.  You should stay with the same dispensary for the maximum consistency.  Most patients start w/CBD (cannabidiol) although THC may help more with pain, dyskinesias and motor functioning.  Avoid smoking due to cancer risk.  Use creams, patches, edibles, vaping in that order.  Start low and increase slowly.  There are side effects.  Tell your doctor about your use.

Take-Home messages
* There are many different (100+) psychoactive chemicals in cannabis and products derived from cannabis may vary widely in terms of their benefits and side effects.  Some are stimulants, others will help you sleep.
* There is currently no conclusive evidence supporting the benefits of cannabis for any aspect of PD.
* Anecdotal evidence suggests cannabis may help pain, sleep, appetite, nausea and anxiety.
* Research to date on motor symptoms and dyskinesias in people have been either negative or inconclusive to date.
* Potential side effects include confusion, low blood pressure, falls and pulmonary issues if smoked.

Question and Answer:

There’s no evidence to suggest people with PD will experience benefits from medical marijuana?
There’s evidence from other diseases that symptoms like nausea, appetite, anxiety, sleep will also help in PD.

THC most helps pain.  Would you recommend creams for that?  How do you go about acquiring that?
Where it’s legal if you have a medical license you go to a dispensary and ask for the creams or patches.  Where it is not legal, pure CBD (cannabidiol) products can be shipped across state lines, although it may not be as efficacious without a small amount of THC for pain.  There is still a legal risk.

The negative interactions of these drugs include hallucinogenic effects so what is the risk for people with psychosis?
The literature provides guidance.  For people with dementia or advanced PD you must be more cautious.  The potential for developing side effects is higher.  Paranoia, hallucinations, and delusions risk is higher.  For those with Lewy Body Dementia CBD has been useful as a calming influence.

What is the difference between recreational and medical marijuana?
In Colorado there are both types of dispensaries.  The products are similar although the recreational dispensaries focus on higher THC. The reason to get a medical license is to have more access to more CBD (cannabidiol) products, creams and patches that are not usually used for recreational purposes.  It also gives you a tax break.

Is it covered by insurance?
Not yet.

People with PD are resigned to the need to increase dose as disease progresses.  Same with marijuana?
No long term studies to show this.  The doses he’s worked with patients seem to be stable.  Other medications, like opioids, benzodiazepines can be replaced with cannabis in lower doses, less cloudy cognition to get off opioids.

Should you worry about getting addicted to cannabis?
It does not appear using cannabis creates a physical dependency like opioids and benzodiazepines, although they can develop a psychological dependence.  If you are younger and considering cannabis for sleep or pain he would say to give it a try.  There is no downside to using it long term.

Hemp is related to cannabis.  What is the relationship between them?
They are the same genus but it does not include the psychoactive chemicals.  Hemp products will be legal, but he doesn’t know if they would be effective to treat what they claim to, or not.

People with pain muscle cramping find the calming effect of marijuana relieve dystonia symptoms?  Do you think that’s what’s happening?
Muscle cramping or dystonic pain shows benefit by using CBD (cannabidiol) with a bit of THC to relieve muscle cramping.  It could be the relaxation effect that relieves the pain.  The cannabinoid system is also involved in pain perception.  A recent study (last year) tested people with PD pain perception 1/2 hour after cannabis use.  Their pain threshold increased. After 12 weeks of use the thresholds were even higher.  Cannabis use quiets the nervous system and increases pain tolerance.  It can be particularly useful, especially creams, for pain control by both peripheral and central mechanisms.

Do the cannabinoids go right into the skin through the skin?
Yes, predominantly that is a local effectiveness similar to lidocaine cream.  With the patches it is a combination of local and periphery effect.

Does cannabis help with tremor?
That is being studied now by using CBD (cannabidiol).  There are reports of cannabis effectiveness on tremor, but they are just reports, not studies.

For a person with Parkinson’s who wants to try cannabis, how do they approach their doctor?
Even in Colorado, neurologist responses are mixed.  Some are still not comfortable in writing the paperwork to get a license.  There is some talk about teaching and training in medical school to accommodate this need by patients.  You should talk about cannabis as complementary medicine.  If your doctor is not cooperative you should not proceed on your own or you may experience detrimental side effects without medical support.  You should get a referral to a cooperative doctor before proceeding.  Ask for a 2nd opinion. Insurance pays for 2nd opinions.

Any concern about cannabis and DBS (deep brain stimulation)?
Same cautions apply.  Speech, balance, cognition challenges can be magnified by cannabis.  There should be not any particular benefit or detriment due to the presence of a DBS unit.

Impulse control disorder magnification by cannabis use?
No studies on this.  There should be no relationship excepting if the individual becomes obsessed with using cannabis just as they could become obsessed with anything else (sex, food, gambling, etc.)

Atypical parkinsonisms advice?
One study suggested CBD (cannabidiol) can be helpful in Lewy Body Dementia (LBD) by calming reaction to hallucinations.  Be aware of low blood pressure, falling risk, etc. as for regular PD.

How can you get involved in research studies for cannabis?
Clinicaltrials.gov has all the clinical trials in the world.  Search Parkinson’s and cannabis.
Look at Fox Trial Finder.  Use the PubMed search engine.  Search for research studies on topics of interest to you and contact those researchers.  You can make financial donations to those researchers and/or their research organizations.

“21 Tips for Washing, Grooming and Going to the Bathroom”

Earlier in the year, a post on Parkinson’s News Today (parkinsonsnewstoday.com) offered 21 tips to make washing, grooming and going to the bathroom easier and safer.  Though the blog post is on a Parkinson’s-related website, the tips apply to everyone with mobility issues or those at risk of falling.

Robin

——————————

parkinsonsnewstoday.com/2018/01/15/21-tips-washing-grooming-going-bathroom-parkinsons-disease/

21 Tips for Washing, Grooming and Going to the Bathroom With Parkinson’s Disease
By Wendy Henderson
Parkinson’s News Today
January 15, 2018

As a person’s Parkinson’s disease progresses, simple everyday tasks such as washing, grooming and going to the bathroom can become difficult due to typical Parkinson’s symptoms such as tremors or rigidity. Those living with the disease will be keen to do as much for themselves as possible and retain as much of their independence as they can, particularly when it comes to personal hygiene.

We’ve put together a list of handy tips to help people living with Parkinson’s continue to wash, groom and go to the bathroom easily and safely…

Washing

• Installing at least two fitted handrails near the bath or shower will allow the patient to grab hold of something safe and secure while getting in and out of the bath or shower. These should be professionally fitted if possible to ensure they are strong enough to support the patient’s weight.
• A chair or bench in the shower or bathtub will help those who have trouble balancing while standing. A handheld showerhead is best used in these circumstances.
• Make sure the water isn’t too hot.
• Place non-slip rubber mats in the bath tub and shower cubicle.
• Bath rugs and mats should have a rubber backing so they don’t slide across tiles.
• Liquid soap in a pump dispenser is safer to use than hard bars of soap which can slip out of hands and leave slippery residue underfoot.
• Install a shelf in the shower or bath area that is between knee and shoulder height for easy access to soap, shampoo, and other essential washing items.
• Advise the patient to always take their cell phone or medical alert device into the bathroom if they’re home alone.

Grooming

• Patients should sit down when brushing their teeth, shaving, applying makeup or drying their hair so they don’t have to worry about balance.
• It’s important to support the upper body by resting elbows on the sink or vanity when grooming.
• Electric devices are often better and safer to use than non-electric ones, such as toothbrushes and shavers.
• Hands-free hair dryers can be mounted on a vanity unit.

Going to the bathroom and incontinence

• Toilet frames or grab bars will help patients get up off the toilet safely.
• Introduce a regular schedule for visiting the bathroom, such as every two hours or before meals.
• Avoid drinking caffeinated drinks which may cause more frequent bathroom visits.
• Try to avoid fluids two hours before bed.
• Patients should use a nightlight or keep the bathroom light on during the night so they can make their way to the bathroom safely.
• It’s advised that those with Parkinson’s attempt to fully empty their bladder each time they visit the bathroom.
• If patients become prone to bathroom accidents, they should try using incontinence products such as pads or padded underwear.
• Patients should seek medical advice if they experience burning or a sudden increase in frequency or urgency to urinate as this may indicate a urinary tract infection.
• A urologist can help if patients are experiencing problems with incontinence.
Earlier in the year, a post on Parkinson’s News Today (parkinsonsnewstoday.com) offered 21 tips to make washing, grooming and going to the bathroom easier and safer.  Though the blog post is on a Parkinson’s-related website, the tips apply to everyone with mobility issues or those at risk of falling.

Robin

——————————

parkinsonsnewstoday.com/2018/01/15/21-tips-washing-grooming-going-bathroom-parkinsons-disease/

21 Tips for Washing, Grooming and Going to the Bathroom With Parkinson’s Disease
By Wendy Henderson
Parkinson’s News Today
January 15, 2018

As a person’s Parkinson’s disease progresses, simple everyday tasks such as washing, grooming and going to the bathroom can become difficult due to typical Parkinson’s symptoms such as tremors or rigidity. Those living with the disease will be keen to do as much for themselves as possible and retain as much of their independence as they can, particularly when it comes to personal hygiene.

We’ve put together a list of handy tips to help people living with Parkinson’s continue to wash, groom and go to the bathroom easily and safely…

Washing

• Installing at least two fitted handrails near the bath or shower will allow the patient to grab hold of something safe and secure while getting in and out of the bath or shower. These should be professionally fitted if possible to ensure they are strong enough to support the patient’s weight.
• A chair or bench in the shower or bathtub will help those who have trouble balancing while standing. A handheld showerhead is best used in these circumstances.
• Make sure the water isn’t too hot.
• Place non-slip rubber mats in the bath tub and shower cubicle.
• Bath rugs and mats should have a rubber backing so they don’t slide across tiles.
• Liquid soap in a pump dispenser is safer to use than hard bars of soap which can slip out of hands and leave slippery residue underfoot.
• Install a shelf in the shower or bath area that is between knee and shoulder height for easy access to soap, shampoo, and other essential washing items.
• Advise the patient to always take their cell phone or medical alert device into the bathroom if they’re home alone.

Grooming

• Patients should sit down when brushing their teeth, shaving, applying makeup or drying their hair so they don’t have to worry about balance.
• It’s important to support the upper body by resting elbows on the sink or vanity when grooming.
• Electric devices are often better and safer to use than non-electric ones, such as toothbrushes and shavers.
• Hands-free hair dryers can be mounted on a vanity unit.

Going to the bathroom and incontinence

• Toilet frames or grab bars will help patients get up off the toilet safely.
• Introduce a regular schedule for visiting the bathroom, such as every two hours or before meals.
• Avoid drinking caffeinated drinks which may cause more frequent bathroom visits.
• Try to avoid fluids two hours before bed.
• Patients should use a nightlight or keep the bathroom light on during the night so they can make their way to the bathroom safely.
• It’s advised that those with Parkinson’s attempt to fully empty their bladder each time they visit the bathroom.
• If patients become prone to bathroom accidents, they should try using incontinence products such as pads or padded underwear.
• Patients should seek medical advice if they experience burning or a sudden increase in frequency or urgency to urinate as this may indicate a urinary tract infection.
• A urologist can help if patients are experiencing problems with incontinence.