Chances are, by the time you are diagnosed with Parkinson’s disease, you have been experiencing one or more symptoms for as much as 3-5 years. At first, you become relieved to be able to attach a name to what is going on with your body. Then, once you begin to learn more about Parkinson’s disease, you become scared. Scared of how the disease will progress, scared of how Parkinson’s will limit the dreams you had for retirement, scared of how the disease will affect your loved ones and your relationship with them.
Your doctor will likely give you some basic information about Parkinson’s disease and may start you on a low dose of medicine to help control the tremors and stiffness you may be experiencing. The doctor may also recommend a course of physical therapy with a therapist trained specifically to treat individuals with movement disorders. Once you have completed physical therapy, your therapist and/or doctor may recommend that you continue with a regular exercise regime to slow the progression of the disease and to help with balance and gait issues you may be experiencing.
All this sounds great but where do you find the trained therapist? How do you know what exercise regime is best for you?
This is where a support group can help. Members of a support group are more than willing to share information on where to get the best round of therapy and what gyms and other facilities offer the exercise programs you need. Most important of all, members of a support group have been where you are with that initial diagnosis and will lend a sympathetic ear, offer advice on how to handle some sticky situations, and give you and your loved ones that shoulder you may need to lean on at times.
Studies have shown that the information, training, and counseling that participants receive while regularly attending a support group enhances the quality of life, helps to alleviate stress, and may even boost the immune system.
In some areas, members of a support group are actually more knowledgeable than the local medical professionals who do not treat Parkinson’s patients on a regular basis! For this reason, many support groups use their meetings to educate attendees about the disease, advances in treatment, and ideas on how to maintain quality of life as the disease progresses.
It's not just those with Parkinson's that live with the disease. The spouse and/or caregiver needs to become educated so that they can serve as the advocate for the Parkinson’s patient when being treated for an illness or disease not related to the Parkinson’s. For example, there are some medications, both over the counter and prescription, that should not be taken by a person taking medication for their Parkinson’s. If surgery is required, care must be given to the type of anesthesia used, as many Parkinson’s patients are adversely affected. Such complications hinder the patient’s recovery and in some extreme cases, the complications may be irreversible.
Additionally, both the person with Parkinson’s as well as the spouse/caregiver may start to feel isolated. Unfortunately, these feelings of isolation may lead to depression, which is common for both persons with Parkinson’s and their caregivers. A support group can help battle this feeling of isolation and help to deal with depression.
PESGSC is here to help.
The Parkinson's Education and Support Group of Sussex County is a community of people with Parkinson's, caregivers, and experts. We sponsor support groups and other events designed to bring people together in a mutually supportive and encouraging way. In addition, PESGSC collaborates with healthcare providers, researchers, and exercise specialists to produce educational programming and exercise programs tailored for Parkinson's disease.
Please browse the information and resources on our website, and reach out to us with any questions! Email contact@sussexdeparkinsons.com.
