Our mission is to establish the optimal quality of life for the Northeast Ohio community by providing support, information, and advocacy to improve the lives of those with young onset Parkinson’s and those who care about them. We achieve our mission through public awareness, education, advocacy and supporting research until a cure is found. Our goal is to help you be informed, live well and stay strong.
About Parkinson's Disease
Parkinson's disease is a neurological disorder that affects movement. Symptoms may include slowness, rigidity, tremor, and problems with balance and posture. The symptoms of Parkinson's result from the loss of dopamine-producing cells in the brain, but the cause of cell loss is not known. Medications and surgical treatments can relieve symptoms but do not cure the disease. More than a million people in the United States have Parkinson's disease.
There are several excellent websites that provide information about Parkinson's disease and its treatment. See some of our favorites under resources.
What is “young onset?”
The average age at which Parkinson’s is diagnosed is 60. However, about 10-20% of those diagnosed with Parkinson's disease are under age 50, and about half of those are diagnosed before age 40. When the diagnosis is made early, it is referred to as "young onset" Parkinson's disease. So young onsets face different challenges than those diagnosed in their 60s and 70s.
Why do we have a Young Onset Parkinson's Disease support group?
- Connecting with other young people who are going through similar experiences can make you feel less alone. We believe that support groups provide the best forum for the individual and their caregiver to quickly gather information and to grow in the knowledge and understanding of their disease. In support groups you find wonderful people with compassion, courage, humor, and a desire to help each other.
- To recognize and come to terms with your condition at a young age allows you to accept what has happened to you and you can take care of yourself, exercising, taking part in the daily activities you have always enjoyed, consulting a movement disorder specialist and participating with him or her in managing your disease. In other words, take charge of your life as much as possible.
- Living with PD does not mean you should limit what you do. You should live life to the fullest, just as you would without PD. You do not need to advertise you have PD but, at the same time, don’t hide the fact. Freely admit you have the disease, it is nothing to be ashamed of. By being in a support group, you can tell your story which may help somebody else, or you might hear someone else’s story and gain some help from it. Through this give and take you gain strength and courage and learn new ways to cope. No matter how long you have had PD, attending support group meetings should be beneficial for you. The earlier you start, the greater the benefit.
- We offer education about resources such as healthcare, insurance information, budgeting & planning, estate and special needs planning, support services for family & friends and veterans, case management services, mental health and employment and disability information.
How can a support group serve you?
- Learn about Parkinson’s disease treatment, news and research
- Connect with other young people who understand the challenges first hand
- Generate and share ideas for better self-care
- Inspire one another to be strong and improve overall quality of life
- Utilize your own experiences to help others
About Our Meetings
- Frequent presentations by medical experts and others with information helpful to you
- General discussions among our members of mutual problems, concerns, and ways of living better with Parkinson’s. We stress confidentiality at all sessions to encourage greater openness.
- Occasional “Breakout Sessions” for Care Partners to discuss among themselves issues in caring for a Person with Parkinson’s. When Care Partners meet separately, those with Parkinson’s talk about their own issues.
- Exercise is a vital part of optimal living with Parkinson’s disease. To encourage it and to prevent complications from sitting too long, we have a short break mid-meeting during which we do easy exercises while seated.
- We provide refreshments at our meetings, and encourage people to arrive early to meetings to get acquainted with one another and with the informational items available.
Young Onset Parkinson's Support Group
The YoungParkinsonsGroup@ccf.org email address offers interaction and networking for questions regarding the Young Onset Parkinson's Support Group through a dedicated e-mail address. Messages sent are retrieved by the YOPDSG staff who will return emails within 3-5 business days.
This email address is for general Young Onset Parkinsons Support Group-related questions. We cannot field medical questions including personal information through this email address. If you have a medical question please use the secure online form.
YOPDSG voicemail is a dedicated phone line with a confidential voice mail box available as well for interested families. Messages left on this voice mail box are retrieved on a regular basis by the YOPDSG staff who will return calls within 3-5 business days. 216.444.8860