The main focus of the support groups is always to educate people about Parkinson’s Disease and providing counseling to them. Nonetheless, a multidisciplinary approach is one of the most important things in the management of Parkinson’s disease. The support groups also provide rehabilitation solutions in community-based setup.
How do support groups work?
In support group therapy sessions, Parkinson’s patients not only get in touch with the right professionals but also connect with other people with Parkinson’s and other families. Mostly, all the support groups offer assistance like speech therapy, physiotherapy, cognitive stimulation, occupational therapy, psychological counseling, nutrition advice and provide information on necessary medication and needful devices.
Most of the services are provided free of cost and on a long term basis. These no-expenditure aids make rehabilitation facilities easily attainable and also, unlike hospitals, they provide a home-like experience. Support group sessions are generally cheerful and interactive. These therapy sessions build self-awareness among the patients by interaction with other people with the same problem and also by sharing experiences among each other. The dynamic culture of the support groups brings patients together from all strata, all stages of the ailment to share stories and work together to overcome the hurdles. It also enables the support groups to attend to more people at the same time while staying cost-effective.
How do the support groups help the caregivers?
The roles of caregivers are very important in the treatment and management of Parkinson’s Disease. Most of the time, the caregivers are not trained as usually they’re not healthcare professionals but someone from the patient’s family – like their spouses, children or any other loved ones. By being closely connected to the patients, it’s very natural for them to be involved in the disease management.
The caregivers also spend most of their time with the patient while juggling the household chores at the same time, taking care of financial responsibilities and other family members. Emotionally they are anxious about the future and concerned about other people’s reaction; in these circumstances it’s very natural to have negative feelings related to the patient and caregiver. In the process of taking care of the patients, caregivers might often have feelings of denial, anger, guilt, shock, shame, helplessness and sorrow. The support groups help them to overcome the negative feelings and encourage them to stay positive and take care of their own health as well.
Educating the caregivers about the disease is one of the important jobs that is done by the support groups. They are made aware about the dynamic nature of the disease, and advised that the patient will gradually grow more dependent on them as their symptoms will become more prominent and difficult to manage over time.
Parkinson’s patients tend to develop psychological dependency on the caregivers. Many a time, the caregivers feel unfulfilled despite doing everything in their capabilities. The support groups teach them about the limitations and depute responsibilities among other family members. Hence, education and communication with other patient’s caregivers are hugely beneficial for them.
How support groups make the Parkinson’s patient aware about treatments and therapies?
Group sessions make the Parkinson’s patients aware about different treatment options, medications and therapies. The support groups educate the patients about the available medicines, their side effects and diet options, surgical options and their dominance on your health.
The support groups also encourage them to keep a journal of the medications and therapies so that it’s easier for the patients to address their problems when they visit doctors. Parkinson’s patients often get confused about how they will combine so many changes in their regular routine. The support sessions help them plan and make schedules, to make their daily life easier.
Patients also need to be explained that there are individual differences in the treatment process. Different medicines and therapies work differently on patients. As professionals, the support groups put emphasis on various treatment options. The support groups consist of patients from different stages of the disease, so it’s very important to give clarifications about the treatments and therapies suited to various kinds of patients. Moreover, the usage of internet sometimes overwhelms the patients and sometimes even misleads them. In the group sessions, the patients are given the opportunity to ask any questions and clarify their doubts.
How do support groups help try out various new treatments and rehabilitation facilities?
It can be commonly seen in the support group sessions that, quite often, people start participating in therapies and treatments that they were previously reluctant to undertake by watching others. Most of the support groups try to keep the sessions interesting by bringing innovative changes time to time. The support groups also initiate sessions that are based on stimulating creativity – like dance therapy, art therapy, yoga etc. With the help of good facilitators and motivated companions, these therapies play a vital role to make life effortless for the patients. Patients who have undergone surgery or have tried different treatment methods share their experiences with others. However, it’s always prescribed by the support groups to consult with their doctors before they put them to practice.
The support groups help to bring a lot of positive changes in the patients. Initially, many are reluctant to try new therapies, but listening to others stories encourages them to try out new treatment options. Parkinson’s is a progressive disorder and has a different effect on every individual. The patients and caregivers share doubts, medication notes and other available treatment. It helps a lot in the disease management to be part of a group like this.
All the content written above is for informational purposes only. Please consult your medical professional before taking any steps regarding your condition.