March, 2020 | Wisconsin Parkinson Association

Group Activity: Brainstorm Emergency Planning Ideas

March 24, 2020 Facilitators

Create a form together for all members to take home and fill out. Bring additional ideas to our Facilitator Retreat in Appleton!

At a recent Caregiver Support Group meeting, the importance of having a plan in place for emergency situations was a topic of discussion, and for good reason – planning can reduce anxiety! Knowing there is a plan in place for various types of emergencies or unplanned issues can bring peace of mind to both the caregiver and the person managing PD. Here are some examples of discussion topics you can have with your members in helping them to make a plan for unusual or critical issues:

Common concerns for those managing PD include:

If a caregiver falls, who will help the person with PD manage the situation, as they may not have the strength to help them up or care for first aid needs? Who will they be able to contact for assistance – a neighbor, a family member? Have at least two options as part of a back-up plan.
If a caregiver does not return home at an expected time, and is not responding to text or phone calls, how can the person with PD get assistance in locating them or assuring they are ok? Perhaps a neighbor can be assigned to check on the Parkinson’s patient whenever the caregiver is away for extended times.
If a caregiver is placed in a rehabilitation facility or other off site placement in the event of illness, who will care for the person with PD?
- Will it be a family member? If so, you can have the family member meet with you to design a plan in the event of this type of emergency, then the plan is ready to go and everyone is on board with no last minute scrambling to address this issue.
- If it will be respite care, and many organizations offer temporary respite care for even a few weeks at a time, but pre-assessment and registration is required for emergency placement, so this should be part of the plan. Check out facilities to find the best fit before an emergency arises!

Common caregiver concerns are similar:

- - What will happen if my loved one falls and I am not capable of helping them up from the floor? Or if they are injured, and you cannot get them to an appropriate care facility, like urgent care or a clinic, yet it is not serious enough to call an ambulance? Is there a neighbor or family member near enough to help at various times of the day? Make a list and talk to the designated helpers so they know an unexpected call might come to them.
  - What if my loved one’s condition begins to decline more rapidly than we thought it would. Who can help you to plan for future care, legal and financial needs? It is never too early to start looking at options, and while it is a difficult discussion, it makes things much easier if things do change quickly. There is peace of mind in knowing that the place you have chosen was one your loved one approved of and you knew the costs in advance to help plan for that aspect as well.

Often anxiety occurs when we think about what might happen and wonder how we will get help. It may cause unnecessary worry throughout the day. Having a basic plan in place, with resources readily available, can put that anxiety to rest, knowing there is a plan in place and readily accessible.

Facilitator Success Tip: Handling the Overbearing Member

March 24, 2020 Facilitators

As facilitators, we have to go with the flow, and often some of the most memorable group meetings occur when the leader is willing to scrap the plan for the meeting and address a specific need, or do something fun and spontaneous. Likewise, we have all been in a situation in which a member consistently overtakes or dominates the discussion without allowing others to voice their opinions.

One major role of the facilitator is managing that balance of encouraging everyone to take part in the discussion, but assuring that everyone has the opportunity to do so if they like. This is not always as easy as it seems!

Here are some tips to help foster group conversation that is all-inclusive:

At your next meeting, remind everyone in the group guidelines that this is an equal participation group. So if you have 10 people in the group, you want each person to contribute their 10 percent to the discussion if they so choose.
When the situation arises, the facilitator needs to step in and cut off individuals who take far more than their share of time. One gentle way to bring the discussion back to the entire group is to state:
“(Name of member), you are bringing up some great points that are worthy of more discussion, but there are other points of view that need to be heard, so in the interest of time, I need to see if others want to weigh in on this topic.” Then call on the next person interested in contributing to the discussion.
It is also a good idea to let that person know that you would like to hear more about this after the meeting, or that you will circle back to it near the end of the meeting if there is time. This lets them know you feel their opinion is valuable, but lets them know you are going to hold them to the rules of the meeting.
If the problem continues, talk to the person outside of group, either personally or via email. Assure them that you appreciate and value their input, and ask for their help in getting some of the other people in the group to open up and share. Sometimes you can go as far as to ask them to commit to not being the first person to answer a question, or to only answer when you call on them—or to even work out a subtle signal you can give them when they are talking too much. Sometimes a member will feel so strongly about a topic that they may not even realize how much time they have been talking to the group about their experience or opinion.

Education: Nutrition

March 24, 2020 Facilitators

March is National Nutrition Month, and I think one of the best nutritional goals for all of us is to assure we stay well hydrated. You might be surprised to find out just how much influence water has on your health, especially when battling a chronic illness!

Hydration- Physical and Cognitive Benefits

Did you know that being dehydrated by just 2% impairs performance in tasks that require attention, psychomotor, and immediate memory skills?

Here are some additional tips from a previous program on hydration by Sara Beno-Chambers, FNP-BC, MSN, MSCN from Aurora BayCare Medical Center Neurology Clinic and Carrie Taicher RDN, CD from Aurora BayCare Sports Medicine.

Water IS a nutrient!
Some PD medications can raise the risk for dehydration
Can lead to confusion, weakness, balance problems, and respiratory or kidney failure
Water dissolves the nutrients and vitamins we need
Water helps lubricate joints
- Bradykinesia is often seen in PD. Don’t make it any harder on yourself by having joints that are hard to move
Water helps to reduce constipation
Thirst sensation is reduced as we age
- Puts you in a state of prolonged dehydration
  - Allows bacteria to grow in bladder & urinary tract leading to infection
Large glass cranberry juice daily with close to 8 glasses of water per day is IDEAL
- Cranberries make it difficult for bacteria to adhere to walls of bladder & urinary tract
- Bacteria then flushed out by urine
Dry mouth
- Makes it difficult to swallow food
- Without saliva bacteria more likely to grow
  - Tooth decay
  - Bad breath
Thick saliva
- Harder to swallow food because it’s so thick
Dry eyes
- Side effects of PD medications
  - Anticholinergics such as Cogentin or Artane
- Blink reflex is reduced thus less rewetting of eyes
- Consider artificial tears
Aim for at least 8 glasses of water/day
Watch for signs and symptoms of dehydration:
- Fatigue
- Dry mouth and tongue
- Dizziness
- Brain fog
- Sunken eyes
- Difficulty swallowing liquids
- Dark urine

A note from Laurie | March 2020

March 24, 2020 Facilitators

Dear Facilitators,

March blew in with some unexpected changes and health concerns for all of us, and we are adjusting our lives and doing our best to stay well. I know all of you are hoping, as we are, that this time of uncertainty will pass quickly and we can look forward to returning to our regular schedules, including joining our support and exercise group friends again soon. In the meantime, take advantage of those days when temperatures warm a bit to get outside in the safety of a quiet backyard, or take a short drive in the country to break out of the isolation we can all feel from staying indoors for long periods.

It is imperative to keep moving, no matter how small the space! WPA understands the critical need for helping you to do just that, and we have provided a list HERE of many options for exercise and movement during this isolation period for COVID-19. Many of you are joining Mary Wood, our exercise coordinator, as her exercise classes are streamed live in a Facebook group (CLICK HERE to join). Please join her in staying active every day!

You can send these links out to your members in case they have not yet seen these wonderful new resources. If you have members with no computer or Facebook account, HERE is a sheet you could print and send out to keep them moving at home. Most importantly, stay connected – I know many if you are doing this already! Email one another, call one another, and for those of you who are tech savvy, try a video chat or Instant Message with your members who have this capability. It is important to check in with one another to assure all are well, but no matter what type of communication you use, reach out and let them know they are not alone and have support, even during isolation!

I have been so impressed with the wonderful topics you are sharing in your meetings and exercise groups, and especially in the interest many of you have had in bringing exercise to your communities. We know how important it is to manage Parkinson’s with exercise as a major component in the treatment plan, and it is wonderful to see so many of your members actively taking charge of their health by joining exercise programs. Whether it is through movement & music programs, boxing, PWR! programs, LSVT Big and Loud sessions, yoga, biking or other classes, it is so exciting to hear the stories about the difference exercise is making for so many!

As most of you are aware WPA has planned our 34^th Annual Symposium in Appleton this year on June 19th, and we will be making the decision in the next few weeks regarding moving forward or postponing that event as well, depending on the progression of the COVID-19 threat and recommendations from our Governor and other health leaders. As we have done in years past, we will have a Facilitator Retreat the afternoon before our Symposium, regardless of the date, from 1-5pm. I am excited to share with you that based directly on feedback from last year’s Facilitator Retreat evaluation, conversations I have had with many of you during my visits, and evaluation forms from our educational events across the state, the topics we are lining up for you this year will provide you with some wonderful tools to take back to your group!

Here is a quick overview of topics and activities for that afternoon:

Research and PD
Resource Building Workshop:
1. Speaker Resources
2. Topic Lists and Resources
3. Emergency Preparedness Plan Template
Cognition and PD

Hope to see you soon – thank you for all you do!

-Laurie Couillard
Director of Group Engagement
[email protected] | 414-386-2305

Phlegm-busting Drug Ambroxol Shows Promise in Parkinson’s

March 1, 2020 Research

One of the major genetic risk factors believed to contribute to the development of Parkinson’s disease (PD) is having a mutation in the gene called GBA1 (glucocerebrosidase). Unable to do its job correctly, this damaged gene leads to the build-up of unhealthy, misfolded clumps of alpha-synuclein in the brain. These clumps, called Lewy bodies, impact dopamine production and are the hallmark of PD. What if there was a way to prevent the build-up of Lewy bodies in the first place?

A 2020 study published in JAMA Neurology, titled, “Ambroxol for the Treatment of Patients with Parkinson Disease with and Without Glucocerebrosidase Gene Mutations: A Nonrandomized, Noncontrolled Trial” (Mullin et al., 2020), investigated whether an over-the-counter cough syrup, called Ambroxol, may be the key. The cough syrup, specifically, an expectorant, is used to break up phlegm.

This 186-day clinical trial of 17 people with PD ― with and without the GBA1 mutation ― involved participants taking progressively increasing doses of Ambroxol in the form of an oral tablet. Baseline measurements included physical and neurological examination, an electrocardiogram, blood sampling and spinal fluid examination obtained by lumbar puncture. Three additional in-person clinical visits were held on day 11, day 93, and day 186. Of note, at baseline, Ambroxol was undetectable in both the blood serum and spinal fluid. All study participants continued their normal L-dopa therapy throughout the trial.

Results
In study participants both with and without the gene mutation:

Ambroxol successfully crossed the blood-brain barrier.
Ambroxol was safe and well-tolerated at the administered dose.
Ambroxol successfully bound to the mutated genes’ protein, which physically helped the protein function properly.
Healthy levels of alpha-synuclein increased in the spinal fluid.

What Does This Mean?
This study showed that Ambroxol is safe to use as a treatment in people with Parkinson’s. Ambroxol may slow the progression of Parkinson’s disease. How? Taking Ambroxol as a medication can prevent the negative effects of the GBA mutation ― including possibly reducing the formation Lewy bodies at the source. Ambroxol shows promise, and warrants further investigation ― including conducting larger, placebo-controlled trials.

Of note, while Ambroxol has been used as a safe and effective over the counter expectorant for adults and children in more than 50 countries for 30-plus years, the administered dose in this trial was approximately 10 times the specified dosage. Additionally, Ambroxol is currently not approved for prescription or over the counter use by the U.S. Food and Drug Administration (FDA) for any indication, at this time.

Article from Parkinson.org.

Study: People skip Parkinson’s, Alzheimer’s meds as prices rise

March 1, 2020 Life, Research

Rising drug costs are hampering the care of patients with debilitating neurological disorders like Parkinson’s disease and Alzheimer’s, a new study finds.

Patients are less likely to fill necessary prescriptions as out-of-pocket costs increase, said senior researcher Dr. Brian Callaghan, a neurologist with the University of Michigan, in Ann Arbor.

“It’s a pretty predictable 5 percent to 10 percent drop for every $50 increase in cost,” Callaghan said.

For patients with Parkinson’s disease, not taking medications as prescribed can severely impact their quality of life, he noted.

“The Parkinson’s medicines are supposed to help make their tremors better, help them walk faster better. Theoretically, it could prevent falls and hospitalizations,” Callaghan said. “It’s not really preventing people from dying. It’s enabling people to live better and have better symptom control.”

Previous studies have shown that out-of-pocket drug costs are rising for neurologic medications, Callaghan said.

To see how these higher prices affect patient care, Callaghan and his colleagues singled out three neurologic diseases for which there are effective drugs available at a wide variety of prices:

Parkinson’s disease, where the drug pramipexole cost $35.90 for a 30-day supply in 2016, compared to $12.40 for the drug ropinirole.
Alzheimer’s disease, where a month’s supply of rivastigmine was $79.30, compared to $3.10 for the drug donepezil.
Peripheral neuropathy, where pregabalin cost $65.70 for a month compared to $8.40 for gabapentin.

The researchers used a private insurance claims database to track more than 80,000 patients’ prescriptions during a 15-year period, comparing how often they filled prescriptions with their out-of-pocket costs.

In 2015, the Alzheimer’s drug donepezil cost about $3 for a 30-day supply, and researchers found that people filled their prescriptions about 70 percent of the time. On the other hand, the drug rivastigmine cost about $100, and people filled those prescriptions only 45 percent of the time.

A $50 increase in out-of-pocket costs was associated with an overall 12 percent decrease in a patient’s access to Alzheimer’s medications, the researchers found.

The same pattern held for Parkinson’s patients and people with peripheral neuropathy, which causes numbness and pain, usually in the hands and feet.

“I am not surprised,” James Beck, chief scientific officer for the Parkinson’s Foundation, said of the study results. “The free Parkinson’s Foundation Helpline team hears similar stories from people with Parkinson’s disease every day. The cost of medications is a key factor in their budgets and everyday lives.”

The medication regimen for people with Parkinson’s is especially complex, “and the timing of multiple pills a day often taking into account meals is incredibly arduous,” Beck said. “Therefore, missing doses of medications will have the effect of a reduction in quality of life. People may not be able to move as well, sleep as well, or do the activities they enjoy as a result of missing their medications.”

Callaghan pointed out that medication adherence is probably even worse for patients with disorders like multiple sclerosis, where there are only a handful of medicines available and all are expensive.

Callaghan and Beck recommended that patients talk with their doctor and pharmacist if they’re struggling to pay for their medications. There could be cheaper drugs available that would work as effectively.

“For Parkinson’s disease, there are three types of medications that people often take as their first medication. The evidence suggests that starting with any of these medications leads to similar positive outcomes,” Beck said. “Therefore, people with Parkinson’s disease and their providers can work together to identify what might be the most affordable medication to start with in treating their Parkinson’s disease symptoms.”

The study was published online Feb. 19 in the journal Neurology.

Article from UPI.

Pingpong May Help Reduce Some Parkinson’s Symptoms

March 1, 2020 Life, Research

The game of pingpong, or table tennis, may hold promise as a form of physical therapy for Parkinson’s disease, according to a preliminary study presented at the American Academy of Neurology’s 72nd Annual Meeting in Toronto, Canada.

The findings show that 12 Parkinson’s patients who participated in a pingpong exercise program once a week for six months experienced improvements in several symptoms, including facial expressions, posture and rigidity. They were also better at getting dressed and getting out of bed.

Parkinson’s disease is a movement disorder in which the brain chemical dopamine gradually declines. This process results in slowly worsening symptoms that include tremor, stiff limbs, slowed movements, impaired posture, walking problems, poor balance and speech changes.

“Pingpong, which is also called table tennis, is a form of aerobic exercise that has been shown in the general population to improve hand-eye coordination, sharpen reflexes, and stimulate the brain,” said study author Ken-ichi Inoue, M.D., of Fukuoka University in Fukuoka, Japan.

“We wanted to examine if people with Parkinson’s disease would see similar benefits that may in turn reduce some of their symptoms.”

The research involved 12 individuals with an average age of 73 with mild to moderate Parkinson’s disease. The participants had been diagnosed with Parkinson’s for an average of seven years. They were tested at the start of the study to see which symptoms they had and how severe the symptoms were.

The patients then played pingpong once a week for six months. During each weekly five-hour session, they performed stretching exercises followed by table tennis exercises with instruction from an experienced table tennis player.

The program was developed specifically for Parkinson’s disease patients by experienced players from the department of Sports Science of Fukuoka University.

Parkinson’s symptoms were evaluated again after three months and at the end of the study.

The results show that at both three months and six months, study participants experienced significant improvements in speech, handwriting, getting dressed, getting out of bed and walking. For example, at the beginning of the study, it took participants an average of more than two attempts to get out of bed. At the end of the study, it took an average of one attempt to get out of bed.

Study participants also experienced significant improvements in facial expression, posture, rigidity, slowness of movement and hand tremors. For example, for neck muscle rigidity, researchers assessed symptoms and scored each participant on a scale of 0 to 4 with a score of 1 representing minimal rigidity, 2 representing mild rigidity, 3 representing moderate rigidity and 4 representing severe rigidity. The average score for all participants at the start of the study was 3 compared to an average score of 2 at the end of the study.

Two participants experienced side effects; one person developed a backache and another person fell down.

“While this study is small, the results are encouraging because they show pingpong, a relatively inexpensive form of therapy, may improve some symptoms of Parkinson’s disease,” said Inoue. “A much larger study is now being planned to confirm these findings.”

The main limitation of the study was that participants were not compared to a control group of people with Parkinson’s disease who did not play pingpong. Another limitation was that a single specialist assessed the patients.

Article from Psychcentral.com.

For Caregivers: Respite for Two

March 1, 2020 Caregivers, Life

Adult day care centers provide a break (respite) to the caregiver while providing health services, therapeutic services and social activities for people with Alzheimer’s disease and related dementia, chronic illnesses, traumatic brain injuries, developmental disabilities and other problems that increase their care needs.

Some adult day care centers are dementia specific, providing services exclusively to that population. Other centers serve the broader population.

One difference between traditional adult respite, both group and in-home care, and adult day care is that adult day centers not only provide respite to family caregivers but also therapeutic care for cognitively and physically impaired older adults.

Benefits of Adult Day Care

Adult day care allows caregivers to continue working outside the home, receive help with the physical care of a loved one, avoid the guilt of placing a loved one in institutional care, and have respite from what can be a “24/7” responsibility.

The caregiver’s loved one can also benefit from adult day care. He or she is able to remain at home with family but does not require 24-hour care from the primary caregiver. Adult day care participants also have an opportunity to interact socially with peers, share in stimulating activities, receive physical or speech therapy if needed, and receive assistance with the activities of daily living with dignity.

Contact the National Adult Day Services Association for a set of guidelines for adult day service programs. The U.S. Administration on Aging Eldercare Locator can also direct you to adult day care centers in your area. Ultimately, word of mouth is often one of the best ways of finding quality adult day care.

How Do I Choose an Adult Day Care Center?

Conduct an individual needs assessment before admission to determine your loved one’s abilities and needs
Is there an active program that meets his or her daily social, recreational, and rehabilitative needs?
Does the center develop an individualized treatment plan for participants and monitor it regularly, adjusting the plan as necessary?
Are there referrals to other needed community services?
Are clear criteria for service and guidelines for termination established based on the person’s functional status?
Is a full range of in-house services offered, such as personal care, transportation, meals, health screening and monitoring, educational programs, counseling and rehabilitative services?
Does the center provide a safe, secure environment?
Are the volunteers qualified and well-trained?
Does the center adhere to or exceed existing state and national standards and guidelines.

Article from Today’s Caregiver.

Group Activity: Brainstorm Emergency Planning Ideas

Facilitator Success Tip: Handling the Overbearing Member

Education: Nutrition

A note from Laurie | March 2020

Phlegm-busting Drug Ambroxol Shows Promise in Parkinson’s

Study: People skip Parkinson’s, Alzheimer’s meds as prices rise

Pingpong May Help Reduce Some Parkinson’s Symptoms

For Caregivers: Respite for Two

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For Caregivers: Respite for Two