Best Overall: American Parkinson Disease Association
American Parkinson Disease Association
Founded in 1961, the American Parkinson Disease Association is reportedly the largest grassroots network devoted to fighting Parkinsons disease. They have invested more than $185 million in raising awareness, supporting educational programs, and funding research, with the goal of putting an end to PD.
The professionalism, ease of use, and the number of support group services that the ADPA provides are what make this organization the best overall support group for Parkinsons Disease.
In 2017, the ADPA collaborated with a support site, called Smart Patients, to form a new online support forum. Within this free discussion forum, patients with PD, loved ones, and caregivers can socialize, learn more about PD, and share tips and coping strategies about living with the disease.
As an added bonus, registration is simple: All people need to provide is an email address. The website overall is clean, well-organized, and conversations are easy to sift through or start on your own.
Besides its friendly and warm online support community, the ADPA has over 1,400 free support groups nationwide. Each one is uniquesome are devoted to people diagnosed with PD at a young age while others focus on caregivers or family members of people with PD.
The ADPA also offers exercise classes, such as Tai Chi, non-contact boxing, yoga, and dance, as well as educational seminars and social meet and greet events.
Why Is Distinguishing Young
Socially, people who are affected by PD at a younger age experience the disease differently they may be at a different stage of their career and often have less time to engage in their own care. They may also have children or are planning to have children and have questions regarding passing on PD genes.
Medically, doctors tailor treatment when it is a younger person with PD. The younger you are, the more likely the disease is genetic. Your care team may offer genetic testing or counseling. Younger brains also have a higher neuroplasticity potential which allows the brain to handle and respond to disease and therapy differently.
Support Groups Just For Family Caregivers
Family and friends are always welcome to our support groups, but we also have some support groups that are just for you. Care Partner Groups are a special program to give needed support for caregivers in a safe and confidential group of peers. In these groups you can hear what has worked for others in your situation. You can also find people who really understand the mixed emotions you might wrestle with. They deal with some of the same things you do and it is great to have a good laugh together, or a good cry, when you need one.
Don’t Miss: What Is The Average Age For Parkinson’s Onset
Resources For Care Partners
When one person in a couple or family is affected by Parkinsons disease, the other family members live with it as well. To keep your care partnering relationship healthy and balanced, its important that the care partner finds time to take a break from care partner duties, has some outside interests and has others they can turn to for support and resource information.
Be proactive find a Care Partner Support Group. Find time to build exercise and good nutrition into your life. Our Chapters and Information and Referral Centers offer an array of programs for partners.
How Can I Help Manage My Loved Ones Care
A spouse, adult child or other family members can play a significant role in helping a person with Parkinsons disease stay organised and receive the best care possible.
- Find a movement disorder specialist. A movement disorder specialist is a neurologist with additional training in Parkinsons disease. This specialised doctor is generally on the cutting edge of Parkinsons disease care and can help your loved one build a plan that works best for them.
- Attend doctors appointments with your loved one. Doctors appointments can be overwhelming, and its helpful to have another person along to listen and take notes. A partner may also have a better sense of whether mood symptoms like depression and apathy are a concern. Take a list of questions with you to help guide the appointment and ensure you get all the information you need.
- Stay organised with a calendar that you can take to doctor visits. Note doctor and therapy appointments, the start and stop dates of medicines, and any side effects you may notice.
- Keep a list of all doctors phone numbers and addresses in case of an emergency. Also keep a separate and updated list of all prescription medications, their dosages and instructions and the prescribing provider. Note allergies or medication intolerances as well.
You May Like: Parkinson’s Disease Brain Mri
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.
Like A Bird With A Broken Wing
As we age, we expect things to start breaking. George said as much: well were both getting old so you expect things to happen. It is not uncommon for people to rationalize long-term conditions, like PD, simply as part of normal ageing. For Susan, living with Richard as a PwPD was far more difficult than that.
I think, my understanding of it now and living with it day to day, its not, its like anything, its like the unknown, it, thats the frightening bit what were living through is just our lives, its not, this isnt the nightmare, its just our lives with that thrown in, if you see what I mean
The nightmare of living with PD threw up constant challenges for Susan which seemed to present a kind of inauthentic homelikeness in one way it sounds like Susan is trying to normalize the challenges embedded within her experience with Richard but there is a sense of her not being okay with it. Indeed, that is corroborated by Richard: I mean something that would take me an hour, might take me three now to the fact that I dont attempt it anymore. Later on, though, Richard is more optimistic: as long as I can do it, I will do it. In Anns account also there is a feeling of hope despite the daily struggles she experiences.
its like, an animal who has a wing broken, a bird whos got a broken wing, it will still feed and move around, even though its holding the wing and its the same with patients with Parkinsons
Also Check: Difference Between Lewy Body Dementia And Parkinson’s Disease
How Parkinsons Disease Affects Families
By Jennifer Satery 9 am on June 26, 2019
When seniors are diagnosed with Parkinsons, the diagnosis can also impact their families and friends. The disease can bring families closer together, but it can also lead to emotional and mental burdens. Learns how Parkinsons disease affects the whole family.
Toronto 1 Support Group
The safety, health and well-being of our Parkinson community across Canada are of utmost importance to Parkinson Canada and we continue to monitor developments.
During this global outbreak of COVID-19 , we are implementing proactive ways to help manage the risk and reduce potential spread of this disease to those most vulnerable.
Until further notice, in-person support group meetings will not be held. We will make alternate arrangements using telephone/technology to provide information and support. Please contact your local support group leader or visit this webpage: https://www.parkinson.ca/parkinson-canadas-action-plan-for-covid-19/ for more information and updates about events near you. Additional decisions to cancel public meetings and events may be posted, as we evaluate the risks for you and our community.
- Address :
You May Like: Parkinson’s Disease And Vision
What You Can Do To Help Children Adjust To Pd
about changes in your home if at all possible. The staff at the school, along with sports coaches or leaders of other extracurricular activities, can be your allies in watching over your childrens emotional health and looking out for signs of distress. Sharing accurate PD information with the other adults in their lives will help ensure that your attitude and philosophies are always communicated in a similar way.
Establish family meetings to create opportunities to regularly address issues and worries, along with what is working well. You may use one of the books about Parkinsons written for children as a jumping off point for the discussion. Below youll find a list of a few of these books for reference. As PD is a progressive condition and will change over time, new questions may come up and need to be addressed. Plan a fun activity following a PD talk.
Maintain family life, while remaining flexible with the changes that occur. Encourage and reassure your kids to continue their involvement in favorite activities, interests and hobbies. They should have fun and live their normal lives as much as possible. This is important for their overall wellbeing.
Bring children to a neurology appointment so they can learn about PD. If they are interested, you can talk more about research into new treatments and with specialists who are available to help.
Empower children by helping them organize a PD fundraiser or raise PD awareness. It is something they can do to help.
How Much Does In
The fees associated with private in-home Parkinsons support services vary depending on the level of care required. The Australian Government and various state governments offer a number of support packages for those living with Parkinsons disease, including those that fall under the Commonwealth Home Support Program, Home Care Packages, and more.
For more information and to work out a care plan for in-home Parkinsons disease support, get in touch with our friendly team today.
Read Also: Parkinson’s Disease And Eating Problems
Drug Therapy And Research
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.
Getting The Support You Need
Article written by Jackie Hunt Christensen.
Getting past the distress of those three words, “You have Parkinson’s” can be tough. At this point, you may be saying to yourself, “I am not sure if I can handle all the challenges I am facing.”
In addition to getting the best medical care possible, living well with Parkinson’s is also going to require finding and getting the support you need in other areas of your life. Remember, support does not have to come solely from a spouse, or even a family member, but can be found with anyone who is willing to lend a hand.
Read Also: Stabilizing Spoon For Parkinson’s
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.
Other Places To Find Support
Support groups aren’t for everyone. If they don’t appeal to you, there’s no need to force it. If you were involved in community, religious or hobby-based organizations in your life before Parkinson’s, keep up those ties and friendships. In addition, educating yourself about Parkinson’s, and getting involved with local or national Parkinson’s organizations, can be ways to meet people who share some experiences with you without joining a support group.
Find Support in the Parkinsons Buddy Network
Create connections and find community online in the Parkinsons Buddy Network. Were building an online support system, one buddy at a time.
Read Also: Wearable Technology For Parkinson Disease
Case Management And Counseling
Our Social Work services can make a big difference for caregivers. Whether you need help finding the right home health agency, a listening ear on a hard day, or a family meeting to discuss how kids and parents can work together to provide care, call on us! Our experienced Social Work staff have the flexibility and expertise to help ease the many concerns that can come up on along the way. By offering these services for free, we eliminate barriers to all who need these important services.
Help Them Feel Normal
A disease like Parkinsons can interfere with the normalcy of someones life. Because people may focus so much on the disease and its symptoms, your loved one may start to lose their sense of self. When you talk to your loved one, dont constantly remind them that they have a chronic disease. Talk about other things like their favorite new movie or book.
Recommended Reading: Cane With Laser For Parkinson’s
Foster A Good Relationship
Lastly, maintaining your relationship and communication with the person with Parkinsonâs can be the most challenging and rewarding aspect of caregiving. As Parkinsonâs disease progresses, the roles change and the person with Parkinsonâs may go from being an independent head of the household to a very dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.
Parkinson’s Disease: Resources For Patients And Families
Parkinsons disease affects every patient differently. This information can help you gain a better understanding of how the disease may affect you and your caregivers.
- A handbook on Parkinsons disease
- Links to national Parkinsons organizations
- Exercise resources
- Worksheets to help you manage your condition
Also Check: What Happens In Parkinson’s Disease
Make Daily Activities Simpler
Simplifying your daily activities may help you to save your energy for activities that really demand it. It also may help to adjust your daily schedule so that your routine is less stressful or tiring.
Physiotherapists, occupational therapists, other people who have the disease, and the people who care for them may be good sources of help and support.
What Is Parkinsons Disease
Parkinsonâs disease is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinsonâs disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.
Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesnât get communicated. By the time a person starts to experience motor symptoms of Parkinsonâs, theyâve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.
Don’t Miss: Types Of Parkinson’s Disease
What To Expect From A Support Group
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.