Wednesday, September 21, 2022

Community Resources For Parkinson’s Disease

Drug Therapy And Research

Parkinson’s Disease Community Resources & Future Planning

If the disease progresses beyond minor symptoms, drug treatment may be indicated. Drug therapy for Parkinsonâs typically provides relief for 10â15 years or more. The most commonly prescribed medication is L-dopa , and this helps replenish some of the depleted dopamine in the brain. Sinemet, a combination of levodopa and carbidopa, is the drug most doctors use to treat Parkinsonâs disease. Recent clinical studies have suggested, in the younger person, the class of drugs called âdopamine agonistsâ should be used prior to levodopa-carpidopa except in patients with cognitive problems or hallucinations. In those older than 75, dopamine agonists should be used cautiously because of an added risk of hallucinations.

Other drugs are also used, and new drugs are continually being tested. It is common for multiple drugs to be prescribed because many of them work well together to control symptoms and reduce side effects. Contrary to past beliefs, starting Sinemet in newly diagnosed people does not lead to early symptoms of dyskinesia . Current knowledge is that the disease progression causes dyskinesias, not a âresistanceâ to the drug.

Quality of life studies show that early treatment with dopaminergic medications improves daily functioning, prevents falls, and improves a personâs sense of well-being.

How Does Alcohol Affect Parkinsons Medication

The interaction between Parkinsons medications and alcohol is a common topic on MyParkinsonsTeam. I miss my red wine and whiskey on occasion, one member wrote. I found that it just makes my meds stop working. Another member said, My husband has been told he shouldn’t drink with his meds.

Alcohol can exacerbate the side effects of one of the most common Parkinsons medications, levodopa/carbidopa. Many neurologists recommend avoiding alcohol while taking this drug.

I have to limit myself to one Scotch on the rocks now, a MyParkinsonsTeam member said. I used to have three or four, but the side effects are too bad. Another wrote, Never really a good idea to mix alcohol with meds.

Whether you decide to continue your current drinking habits, cut down, or eliminate alcohol altogether, its important to listen to your body and have open conversations about these topics with your neurologist.

If you find yourself drinking alcohol to cope with other issues, such as depression and anxiety, you may find that healthy practices such as physical activity can help. In addition, participating in activities such as tai chi, yoga, and meditation may help ease the symptoms and complications of PD.

Information To Have Ready For Our Team

If youre calling the office for help or coming to an appointment, please have answers to these questions ready:

What is the specific problem? Are you having pain, balance issues or other worsening symptoms, for example?

When did the problem start? Be as specific as possible. Share the date and time of day.

Is it constant or does it come and go? If it comes and goes, do you notice a pattern? For example, is it connected to when you take medications or to a time of day?

Where is the problem? Left hand? Right foot? Be as specific as possible.

What happens during episodes? Describe a typical incident: My right hand tremor worsens and becomes jerky, and my right foot starts to jerk, too.

What makes the problem better orworse? Bring information on treatments, positions or medications that help or dont help.

How would you rate the problem on a 0-10 scale and why? In addition to rating the physical effects, you may want to assign numbers for how much it bothers you and affects your quality of life: Although its about a 5, or moderately disabling, its an 8 because its so distressing.

What medications are you taking? When you come to appointments, bring a full list of your medications for Parkinsons and other conditions. Include:

  • Dose of each.
  • Time of day or how often you take each.
  • Any allergies or medications that didnt work and why.

Have you had any recent incidents ? All of these can worsen symptoms for Parkinsons patients.

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Best For Support Group Leaders: Parkinsons Movement Disorder And Alliance

Parkinsons Movement Disorder and Alliance

The Parkinsons Movement Disorder and Alliance is a nonprofit organization that focuses on characteristics like empathy, creativity, resiliency, and shared learning.

It also has a wealth of support and educational services. Aside from online programming and Zoom support groups, this organization also offers various in-person support groups located throughout the country.

Additionally, the organization also offers numerous educational programs like “Lunch with Docs,” in which individuals can meet with a movement disorder specialist virtually over lunch from the comfort of their own home.

However, what is truly unique about this organization is that it offers free workshops across the country called In Sync for supporting and teaching people interested in developing their skills as a support group leader.

There, people can learn skills and build confidence in designing and leading their own support group for Parkinsons disease or other movement disorders. Leadership experts and healthcare professionals also provide guidance through informational presentations.

Caregiving & Helping Others

The Top 10 Early Warning Symptoms of Parkinsons Disease ...

Parkinsons disease can be emotionally difficult for caregivers, but it also has its rewards.

Here are some strategies that can be helpful while caring for a person with Parkinsons disease:

According to a 2018 study, the cognitive symptoms of Parkinsons disease had a greater emotional impact on loved ones and caregivers than the physical symptoms. As the dementia progresses, carers may experience a sense of grief and loss, as they feel their loved ones are not themselves anymore.

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New Community Resource Parkinsons Wellness Center

Oct 26, 2021 | Health & Fitness

When rehabilitation therapists Jennifer Freeman and Carolyn Utesch attended a 2019 conference sponsored by the Parkinsons Foundation, they couldnt have predicted how it might change their livesand the lives of the estimated 350 Monroe County residents living with Parkinsons disease.

We saw teams from all over the country serving the population living with Parkinsons much more thoroughly than we are here in Bloomington, Freeman says. We were simply inspired.

The two started brainstorming, meeting weekly to plan how they might bring that kind of care to Monroe County. The result is the Parkinsons Wellness Center.

The pandemic has put a hold on a physical location, but Utesch and Freeman have forged ahead with resources and virtual offerings, including a Thursday evening Parkinsons Support Group that meets twice a month via Zoom.

Support group topics have included discussions about reducing fall risk, grief and loss, exercise, the COVID-19 vaccine, and adaptive equipment.

One guest speaker was a coach with Rock Steady Boxing, a boxing-inspired class that can reduce, reverse, and delay the symptoms of Parkinsons.

There were several members who had taken Rock Steady classes here in Bloomington before the pandemic and were missing it, Freeman says. Support group members are continuing with the classes until face-to-face Rock Steady classes start again locally.

Best Way To Find A Local Support Group

You might also try looking for a support group thats close to home so its easy for you to get involved. Search the PMD Alliances online database of support groups divided by state. You could also ask your doctor for recommendations.

Although every support group for people with Parkinsons disease is designed to help you find the support you need to keep on living your life, every support group is also unique.

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Caregiving For People Living With Parkinsons

Caring for a loved one with PD can be a challenging job, especially as the disease progresses. Former caregivers of a loved one with PD suggest doing the following : Get prepared, Take care of yourself, Get help , Work to maintain a good relationship with your loved one, and Encourage the person with PD for whom you care, to stay active.

Preparing for caregiving starts with education. Reading this fact sheet is a good start. More resources are available to you in theResources section of this fact sheet. Early Parkinsonâs disease usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.

What To Expect From A Support Group

Navigating Resources in the Parkinson’s Disease Community

Some in-person groups are small, others are large. Some groups meet during the day, while others gather in the evening or even on the weekend. Some in-person groups meet in a community-based setting, like a YMCA, a library, or a church basement, while others may hold meetings in a hospital conference room, a clinic, or a rehabilitation center.

Meanwhile, online support groups also vary in size and in demographics. Some groups have been around a long time, with members who have formed friendships over the years, while others may be relatively new groups with people who are still getting to know each other.

One thing all support groups have in common in this: They want to help people affected by Parkinsons disease.

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Walk Off Parkinson Fundraiser

Walk Off Parkinsons is a free family-friendly walk and fundraising program to support those in our community impacted by Parkinsons Disease. It is organized by the Parkinsons Foundation of the National Capital Area and held in the fall at Nationals Park in DC

You can check out more details at this link:

And lastly we would recommend ParkinsonTV.org

The videos on this site are from back in 2017-2018 but have some valuable information that is still relevant today. Season One has some basic information with episode 3 on nutrition being highly recommended. Find season one here: www.ParkinsonTV.org/one

Season Two is on mental health issues with Parkinons disease including depression, anxiety and more. Find season two here:

Take Care Of Yourself

Probably one of the most important, and sometimes difficult, things caregivers can do is to take care of themselves. This includes maintaining mental and physical health by making and keeping your own medical and dental appointments. As a caregiver, it is important to keep your job whenever possible as it provides not only financial help and possibly insurance coverage, but also a sense of self-esteem. Join a support group for caregivers if possible. Support groups help you meet people who are going through what you are going though, vent frustrations, give and receive mutual support, and exchange resource information and coping strategies. Whenever possible get your sleep, take breaks, make and keep social activities, and try to keep your sense of humor.

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Welcome To The Parkinson’s Report

The Parkinsons Report is a space for updates, insights, and professional input on Parkinsons disease. If you are looking for ways to manage your disease with more confidence, supporting someone you love as they navigate a Parkinsons disease diagnosis, or if you are providing therapy to someone with Parkinsons disease and need inspiration, youre in the right place.

Gathering information about Parkinsons disease can be overwhelming. The Parkinsons Report simplifies that process. Our mission and design is to demonstrate a collaborative effort to consolidate resources for you and to keep it fresh! While you are here stop by the blog to catch our most recent post or check out the events coming up for fundraising for a cure and meeting others who are mastering the art of life and Parkinsons disease. Thanks for stopping by. We hope you stay awhile!

Parkinson’s Disease and COVID-19: What You Need To Know

Best Facebook Support Group: Parkinsons Community

Parkinsons Disease  Arnprior &  District Family Health ...

Parkinsons Community

Parkinsons Community operates a Facebook support group with over 18,000 members and hundreds of posts each month.

This free, active, and insightful group is private, meaning it requires permission to join, and posts are only visible to members. Its open to people living with PD and their family members.

While the company that runs this community is focused on finding study participants for various research studies, individuals can simply join the Facebook group for support and encouragement.

Besides the online support group, Parkinson’s community offers other resources as well. People can qualify to speak to a Parkinson’s disease advocate about their personal journey with PD . There, individuals can also see if they qualify for different PD-related clinical trials.

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Parkinsons Disease Resources & Information

Parkinsons disease is a progressive nervous system disorder that affects movement. Symptoms develop gradually, often starting with a small tremor in one hand and a feeling of stiffness. Over time, other common symptoms include tremors, a loss of balance and coordination, gait chances, loss of the sense of smell, fixed facial expressions, vocal tremors, handwriting changes, sleep problems, mood changes, difficulty eating, constipation, fatigue, skin issues, dementia, hallucinations, and delusions. There is currently no cure for Parkinsons disease, but there are treatments available to manage symptoms. TheParkinsons disease resourcesbelow provide helpful information on Parkinsons disease, guidance, and support. Palliative care can help patients with Parkinsons disease manage side effects and navigate treatment, whilehospice care can help patientsnearing end of lifemanagepain, stress, and discomfort caused by the illness.

How Does Alcohol Affect Parkinsons Symptoms

In general, alcohol can be harmful to people with chronic conditions. According to the Centers for Disease Control and Prevention , overconsuming alcohol can be a long-term risk factor for a weakened immune system, learning and memory problems, high blood pressure, digestive issues, and various types of cancer. When looking specifically at Parkinsons symptoms, however, reports differ on how alcohol and PD may be linked.

The type of alcoholic beverage consumed may affect whether drinking has an impact on PD. A 2013 study found that the risk for developing Parkinson’s disease appeared to increase depending on the amount of liquor consumed, although no link was conclusively found between drinking wine and the development of PD.

In terms of how long-term alcohol use affects the risk of PD, one study published in 2013 followed people who had been admitted to the hospital with alcohol use disorders for up to 37 years. The study authors found that a history of alcohol abuse increased the risk of admission into the hospital for Parkinsons for both men and women. The study authors suggested that chronically drinking too much alcohol can have neurotoxic effects on dopamine, the neurotransmitter in the brain that is relevant to Parkinson’s disease.

There may also be factors other than observable symptoms such as how alcohol interacts with your medication that are important to consider when making decisions about your lifestyle and drinking habits.

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Best For Starting Out: Dailystrength Parkinsons Disease Support Group

DailyStrength

DailyStrength is a division of Sharecare, which was created by WebMD founder Jeff Arnold and the famous Dr. Oz in 2009. The DailyStrength Parkinsons Disease Support Group is a free and welcoming online support community with more than 400 members and 3,000 posts.

The mission of the group is centered around empowering and inspiring each other to overcome PD-related and life challenges.

Overall, the DailyStrength website is inviting and easy to navigate, and registration is straightforward and quick. Posts are informational, practical, and thoughtful. This is, perhaps, a good place to start for people looking for a smaller, more intimate online support group that is not overwhelming or associated with a national organization.

Even though the site is not moderated, to keep the support group safe and positive, DailyStrength has a set of guidelines that the members are asked to follow.

If You Are A Discussion Moderator

Supporting the Parkinson’s Disease community

If youre a moderator or a facilitator for a support group for people with Parkinsons disease, or family members or caregivers for people with Parkinsons disease, you play a very important role in helping the group to be a success. You can start by setting an agenda for each meeting so everyone knows what to expect.

A few other tips for getting the conversation flowing:

  • Start with opening questions that help people to settle in and get comfortable.
  • Make sure everyone knows the ground rules and expectations.
  • Give everyone the opportunity to speak and to be heard.
  • Encourage members to listen when others are speaking.
  • Be respectful if some people choose not to share.
  • Use a handheld microphone in case some people are soft-spoken.
  • Develop some strategies to handle situations in which a few people monopolize discussions.
  • Ask group members to brainstorm topics for future discussions or suggestions for guest speakers.

You also might check out resources from organizations like the Parkinsons Foundation that can help you plan your meetings, encourage participation, and foster the connections that are so vitally important to support group members.

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Who Gets Parkinsons Disease

Parkinsonâs disease, documented in 1817 by physician James Parkinson, is the second most common neurodegenerative disease after Alzheimerâs disease. Estimates regarding the number of people in the United States with Parkinsonâs range from 500,000 to 1,500,000, with 50,000 to 60,000 new cases reported annually. No objective test for Parkinsonâs disease exists, so the misdiagnosis rate can be high, especially when a professional who doesnât regularly work with the disease makes the diagnosis.

American Parkinson Disease Association :

There are no local chapters nearby with this national organization, but it is a wonderful resource if you are looking for more information on Parkinsons Disease and research.

They have put out a Parkinsons Disease handbook and other free downloadable booklets you can find HERE.

You can also find an assortment of webinars on various topics HERE.

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Pd Speech Therapy / Support Group

Speech and swallowing are functions that can be impacted by Parkinson’s Disease. Research has found that speech therapy and related exercises and skills help slow the progression of such symptoms or can even improve one’s daily function. The Speech Therapy/Support Group at NSU Health meets most Wednesdays to offer people living with PD strategies, exercises, and skills to help them preserve speaking and swallowing abilities. Thus, these patients can maintain or improve their daily function and quality of life. An added benefit is the ongoing support group members give and receive.

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