Facilitators

Group Activity: Brainstorm Emergency Planning Ideas

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.

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Facilitator Success Tip: Handling the Overbearing Member

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.

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Education: Nutrition

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

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A note from Laurie | March 2020

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 34th 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:

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

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

-Laurie Couillard
Director of Group Engagement
lauriec@wiparkinson.org | 
414-386-2305

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DaTscan

Several support group members have asked for more information on the DaTscan imaging tool. Listed below is a summary describing what a DaTscan is, why and when it may be used by physicians, and a bit about the process involved in performing a DaTscan on a patient exhibiting some symptoms of PD.

“In cases where the expert is not sure of the diagnosis – is it essential tremor or Parkinson’s, for example– or where a potentially risky procedure is being considered (e.g. deep brain stimulation surgery), it is reasonable for your doctor to recommend a DaTscan. For a person with classic motor symptoms (tremor, slowness, stiffness) who benefits from treatment with medication, the diagnosis is already made. Unless the disease progresses in a way that calls the diagnosis into question, DaTscan is likely unnecessary.”  (Okun, 2012)

The procedure is as follows: the patient receives an injection given via IV of the imaging agent, and will need to wait 3-6 hours for the body to absorb the compound.  “The substance “tags” a part of a neuron in the brain where dopamine attaches to it, something called the dopamine transporter (DaT), showing the density of healthy dopamine neurons” (Okun, 2012). Next, the compound is visualized by a gamma camera, and the areas of the images captured that then “light up” symbolize more surviving brain cells. If the parts of the brain where dopamine cells should be remains dark instead, an expert reader may diagnose early brain degeneration.  This could mean either Parkinson’s disease or parkinsonism. The side effects of a DaTscan are minimal (e.g. injection site pain, headache, dizziness, nausea, dry mouth, hives and skin rash).

“DaT/SPECT scans examine the “function” of the brain rather than its anatomy. This is an important point because unlike in strokes and tumors, the brain anatomy of a Parkinson’s disease patient is largely normal. These scans can show changes in brain chemistry, such as a decrease in dopamine, which identify Parkinson’s disease and other kinds of parkinsonism” (Okun, 2012).

Finally, a determination will be made as to the severity of the brain cell loss.  But patients and their families need to be aware that these scans cannot reliably separate Parkinson’s disease from parkinsonism (multiple system atrophy- MSA, corticobasal degeneration, progressive supranuclear palsy- PNP). “The DaTscan is presently being used as a tool to determine if dopamine degeneration is present, suggestive of a diagnosis of PD, MSA, PSP, or other variants,” (Seifert & Wiener, 2013). Interpretations are not clear cut, and once a scan is determined to be normal or abnormal, the expert will determine if the scan follows the pattern of Parkinson’s disease.

References

  1. https://movementdisorders.ufhealth.org/2012/04/11/should-i-get-a-dat-scan-to-confirm-my-parkinsons-disease/
  2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3601468/
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A note from Laurie | October 2019

Dear Facilitators,

Wisconsin is beginning to explode with the colors of autumn, and I hope you are jumping into the fall season full of excitement for the coming holidays, feeling thankful for all of the wonderful people in your lives, and looking forward to the new opportunities coming your way as a Parkinson’s community!

The WPA team is full of gratitude for the success we have had this past year in connecting with so many of you! Whether we have shared conversation through our events, or touched base during educational programs and site visits, you continue to inspire us with your positivity, sense of humor, dedication and perseverance. Support, partnerships and awareness are growing in Parkinson’s communities throughout the state, helping us to build stronger relationships that in turn bring more resources to more people.

As we continue to increase the number of outreach opportunities we offer, whether through additional educational programs or exciting new exercise programs in new areas, we value and appreciate our facilitators, who so willingly help to assure the information about these programs goes out to those in their area.

We had a very successful Facilitator Retreat back in July, with facilitator representation from across the state – it was so nice to visit with so many of you that day! We had terrific speakers all afternoon on the topics of Stress Management, the PD Self program and Art Therapy- and even got our hands a little messy as we completed a creative art project!

Each of these topics spoke to empowerment, quality of life and self-expression, all critical components for those managing PD and their caregivers. Here are links to each of the presenters notes and presentation slides so you can share this valuable information with members of your groups:

Stress Management
PD Self program
Art Therapy

We received very positive feedback on our speakers and the information they shared, as well as topic suggestions for next year, so we can start planning for the Facilitator Retreat in Appleton on June 18th, 2020 – Mark your calendars now!

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

-Laurie Couillard
Director of Group Engagement
lauriec@wiparkinson.org | 
414-386-2305

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Music & Stress Management

There is no question that music is a universal language that can evoke emotions and memories that span a lifetime. But music can also be a healing mechanism, and can affect every aspect of our development- social, emotional, physical, cognitive and spiritual.

Music can improve mood, decrease stress levels and foster communication- it is truly a healing form of art, and one that should be a part of every treatment plan. Study after study shows the benefit of music in reducing pain, improving outcomes in patients with varying health issues and in promoting social engagement. In the following articles and links, you will see actual footage of music impacting the life of a man with Parkinson’s disease, learn about the neurological benefits of adding music to your life, and discover the many ways you can reduce stress by adding music as a regular part of your life.  The power point provided earlier from our Facilitator Retreat gives you some of the science behind the benefits of music, but just watch someone come alive to music they love and that will be all the proof you need!

“The main thing is that we hear and enjoy life’s music everywhere.” Theodor Fontane

Video: Man with Parkinson’s reacting to music
5 Reasons Music Therapy Works for Neurological and Neurodevelopmental Disorders

Brains Response to Music:

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Facilitator Success Tip: Support for Care Partners

Caregivers play a tremendous part in the care and support of those managing Parkinson’s. It is important when facilitating your support or exercise groups to assure they have a chance to share with other care partners the challenges, successes and hurdles of caring for a loved one with Parkinson disease. I have seen several models for this during my visits, and all work well, no one way is best – find the format that fits the needs of your caregivers in the group.

For some, this will be a regular meeting in addition to the loved one’s support group, as they often want and need to be a part of that as well. For others, it will be less frequent, maybe even quarterly, and more of a break-out session during the regular PD support group meeting, but in a separate room. Some care partners plan a social meeting at a restaurant while their loved one is at an exercise class or in the care of another for a short time.

Whatever the format, it is critical for care partners to be given an opportunity to share feelings about the caregiving role – positive and negative, so they do not feel alone or overwhelmed, and can learn from one another about a variety of topics, such as respite care, medication side effects, legal or financial issues etc.

I am happy to report that our WPA Caregiver Committee is working diligently with us on the development of a program to provide real-time, one-to-one peer support for care partners. We are looking forward to offering this as a resource, and will keep you posted on the progress over the next year as we refine the process for this program.

In the meantime, if you do not already have a care partner support group in place, consider talking with a caregiver in your group who you feel may be a good choice to help initiate this with you. There does not need to be a separate, formal facilitator if the group is comfortable just sharing discussion together, just someone to get the conversation going if necessary. If this is not a feasible option for your group, due to time, space or other issues, here are some valuable resources to help foster support for the PD care partners in your communities, so please feel free to share these with your groups.

Caregiver.com: This organization offers a fantastic newsletter, and focuses on common care partner questions, concerns and issues. I suggest encouraging your caregivers to check out the entire website, as they provide information on everything from driving assessments to building an effective care team:

Article: More Than a Hug: How Caregiver Peers Can Support Each Other 

Family Caregiver Alliance

Twenty Ways for Caregivers to Take Care of Themselves

Releasing Resentment

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Fall Prevention

In honor of the fall season, and the upcoming and not so welcome icy weather, I wanted to share some information on fall prevention!

We have had several speakers help address this topic at various support groups and educational programs, so I am passing on some of those tips for you to share with your groups. There are many precautions one can take when balance becomes an issue in managing Parkinson’s symptoms, and prevention is key- it is important to be proactive to avoid a fall in the first place!

But balance is not the only cause of falls, so it is important to take into consideration other factors that may add to the risk of a fall, such as issues with vision, hearing, environment (clutter), medication side effects like confusion, blurred vision and light-headedness, and more.

Here is some information to share with your group members, taking time to have some discussion about this important topic to help prevent unnecessary falls.

Prevent Falls & Fractures, from Today’s Caregiver
Safety & Mobility Presentation

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