Essential Tremor & Parkinson’s Disease Support Groups

Happy New Year & Best Regards from our team at Steadiwear

Hands for blog Sept 2018

Parkinson’s disease (PD) and essential tremor (ET) are the two most occurring movement disorders with tremors being the most noticeable symptom. Unfortunately, shaky hands lead to secondary medical conditions that affect patients’ physical and emotional lives. A recent study examined psychological complications in PD and ET patients such as depression, anxiety and social phobia, and found a high comorbidity of these disorders (1). This consequently affects personal relationships as well as limits social interaction and the ability of performing activities of daily living.

“My tremor makes me feel negative about myself; I am embarrassed about my tremor; I am depressed because of my tremor; I worry about the future; I am nervous or anxious; I have difficulty concentrating because of my tremor” (2).

It is very important to touch on such complications of PD and ET because they affect half, if not more, of the patients living with these movement disorders. On the bright side, there is a silver lining to this phenomenon. Since so many are affected by these symptoms, there is an abundance of people going through the same experiences, people who may be able to provide support in multiple forms. A study by Heusinkveld et al. showed an association between attending support groups and a better quality of life which includes reduced depression and anxiety for patients (3). This can be explained by the gain in knowledge about the illness, as well as being able to share personal worries and anxieties, and eventually realizing that these individuals are not the only ones suffering from the condition (4).

In summary, since many patients complain of finding it hard to ask their doctors questions or in some cases do not feel comfortable discussing their problems with family and friends, support groups allow PD and ET patients to:

  • Learn from others’ experiences.
  • Gain knowledge about what is available for them in terms of healthcare, home care, therapy etc.
  • Learn about the common symptoms and their treatments.
  • Know what type of research is being conducted in their area.
  • Create meaningful connections with people going through the same experiences.
  • Develop coping strategies.

“ […] There is a lot of camaraderie that goes on and it’s nice to talk with other people about the condition and we enjoy belonging to the local branch of the Parkinson Society. And I would recommend to anybody else who gets the condition they do make the effort and join.” – Anonymous

Although some people prefer not to attend support-group meetings due to their fear of facing people whose symptoms have progressed more than theirs, or simply because they are not yet ready to discuss such issues face-to-face with others, there are many other alternatives in terms of gaining support from the ET or PD community.

Some people have found success in participating in online support groups, whether through discussion boards of established organizations, or simply through social media support groups (Facebook). We highly recommend you go online and search for the support that suits you best.

Other Support Groups & Resource:

Just choose your location from the options below, to see if there is an essential tremor support group operating in your community. Or you can check our events calendar. If not, please consider starting one! Chances are, with the millions of people around the globe affected by essential tremor, it is likely there will be others in your community who are also seeking support.

The International Essential Tremor Foundation Blog.

Many people find that support groups are tremendously effective in helping them cope with the day-to-day realities of having Parkinson’s disease. Groups come in different formats — from large, formal meetings to smaller “living-room” get-togethers — and you probably won’t be equally comfortable with or get the same benefit from all. If you don’t like the first group you find, it’s worth looking for one that suits you better. If you can’t find any you like in your area, consider starting one. If you are unsatisfied with the available options, it is likely that you’re not the only one feeling that way.

“Provides free, reliable information about health issues, by sharing people’s real-life experiences. You can watch people sharing their stories about cancer, autism, motor-neuron disease, pregnancy, drugs, depression and much more.”

Provides a variety of services throughout Arizona for people with Parkinson’s and their family members and caregivers, including:
– Education and training
– Information and assistance
– Recreational programs
– Counseling
– Respite
– Support groups

Local Support Groups in Toronto:

For those living in Toronto or in the neighbouring communities, we have compiled a list of potential sources support you might like:

“Parkinson Canada is the voice of Canadians living with Parkinson’s disease. From diagnosis to discovery. You can count on us to be there at every step of your Parkinson’s journey. We provide education and services to support you, your family and your health team, online, by telephone and in person.”

“With accurate and up-to-date information at your fingertips, thehealthline.ca can help you find the local health and social services you need.”

As always, Steadiwear is constantly seeking for new volunteer testers, at our offices in Toronto, Ontario. Check out our video of our latest tester to see what our test entails. If you are living a little further out why not fill in our survey & keep an eye out for our latest newsletter by subscribing here.

 

Reference:

  1. Smeltere, L., Kuzņecovs, V., & Erts, R. (2017). Depression and social phobia in essential tremor and Parkinson’s disease. Brain and behavior, 7(9), e00781. doi:10.1002/brb3.781
  2. Louis ED, Machado DG. Tremor-related quality of life: a comparison of essential tremor vs. Parkinson’s disease patients. Parkinsonism Relat Disord. (2015) 21:729–35. 10.1016/j.parkreldis.2015.04.019
  3. Heusinkveld, L. E., Hacker, M. L., Turchan, M., Davis, T. L., & Charles, D. (2018). Impact of Tremor on Patients With Early Stage Parkinson’s Disease. Frontiers in neurology, 9, 628. doi:10.3389/fneur.2018.00628
  4. Artigas, N. R., Striebel, V., Hilbig, A., & Rieder, C. (2015). Evaluation of quality of life and psychological aspects of Parkinson’s disease patients who participate in a support group. Dementia & neuropsychologia, 9(3), 295-300.