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.

 

Living with Parkinson’s Disease (The Caregiver Edition)

 

Parkinson’s disease is a progressive, neurodegenerative brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination (Robinette, Charles et al, 2018). Symptoms usually begin gradually and worsen. Overtime individuals may experience mental and behavioral changes, memory loss, fatigue, sleep problems, and depression. PD is most common in men aged 60. However, early onset of the disease can begin at the age of 50 (Robinette, Charles et al, 2018).

Families Coping with Parkinson’s Disease  

Parkinson’s Disease like any other chronic illness manifests many physical and psychological challenges, this can be incredibly hard on the family. Along with the affected individuals the family has to also deal with change and adopt to this new lifestyle that comes along. It can be emotionally devastating to see a family member suffer and having to support and care for them throughout (WHP, 2017).

qaulity of life

Family members of individuals with PD have their work cut out for them. Caregivers and family take part in: 

  • Maintaining quality of life
  • Keeping updated on disease progression, symptoms, treatment and challenges.
  • Offer love and support

(Senelick, 2016)

Maintaining Quality of Life

It is a crucial part of maintaining quality of life even after being diagnosed with PD that affected individuals understand that they are not alone in this journey. The family should actively be apart of the affected family members daily life. Involvement can range from different activities such as going for a walk, watching television, taking a trip to the grocery store, or even doing laundry (WHP, 2017). As long as some involvement is there from the family it can act as a temporary relief from symptoms and enhance quality of life (WHP, 2017)

(Ryerson, 2015)

Keeping Updated on Disease Progression, Symptoms, Treatment and Challenges

Many symptoms of PD are almost invisible these include fatigue, anxiety and depression (Ryerson, 2015). Most of the time it is not immediately apparent that your loved is suffering as it may be internal symptoms. Having frequent conversations about how your loved one feels and what has changed or progressed within their illness is key. This keeps family members in the loop and allows them to accommodate for long-term care.

Offer Love and Support

Doctor’s appointments, support group meetings, communicating with children and other family members can all be very overwhelming. It is a good idea to have and bring a caregiver along to listen and take part in certain situations. For example, it may be a good idea to take your spouse along to a doctor’s appointment as she or he will have a better idea about any mood or behavioral changes and concerns (Ryerson, 2015).

A poem describing Jane Davis’ experience with Parkinson’s disease when her husband, Gary, was diagnosed

Watching 

“I watch
your body slowly deteriorating
not daily, not weekly,
but it is there.
I compare to a year past
and then I know,
your body is betraying you.

Friends notice
family too,
our children don’t want to admit.
To them, you are the superhero
one that can do anything
build anything
fix anything.
Maybe that is how it should be.

I watch you move and sway,
Darn medications.
Darn disease.
I watch you struggle to button,

Darn disease.
I watch you walk with your bent back,
I watch you grimace in pain.
Darn disease.
I watch your hands tremor,
Darn disease.
I watch those many trips to the bathroom
Darn disease
I watch you take your medications
throughout the day
too many to count.
Darn disease
I watch you keep going
fighting back that pain and stiffness

I love your drive
I love that you never give up
I love that you refuse to slow down

I watch you with admiration and love.”

(Parkinson’s Foundation, 2018).

As the poem portrays PD is a rough journey that needs a strong will and strong supportive caregiver. Have any of our readers created any other poems? We would love to read or hear them. Reach out via our Facebook page

External Support Resources

We sometimes forget to keep in mind that PD takes a toll on the caregiver and family. Support is also needed to those providing care to their loved ones. Families no longer have to cope with Parkinson’s disease alone. Many support groups, charities and educational material and aid are openly available. Here is a short list that our team has found to be greatly supportive:

Caring in a Family with Parkinson’s –  Parkinson Canada

The Emotional Side of Caregiving: Parkinson’s Caregivers Share Advice  – Michael J. Fox Foundation

Parkinson’s Disease and CaregivingFamily Caregiver Alliance

References

Parkinson’s Foundation. (2018). How to Cope with Parkinson’s as a Caregiver. Retrieved from http://parkinson.org/Find-Help/Blogs/Caregiver-Corner/How-to-Cope-With-Parkinsons-as-a-Caregiver

Michael J. Fox Foundation. (2018). Support & Caregiving for Parkinson’s Patients: The Michael J. Fox Foundation. Retrieved from https://www.michaeljfox.org/understanding-parkinsons/supporting-caregiving.php

Robinette, J. W., Charles, S. T., & Gruenewald, T. L. (2018). Neighborhood cohesion, neighborhood disorder, and cardiometabolic riskSocial Science & Medicine, 198, 70-76. doi:10.1016/j.socscimed.2017.12.025

Ryerson, N. (2015). Parkinson’s Disease and Your Marriage: Advice from Our Community. Retrieved from https://www.michaeljfox.org/foundation/news-detail.php?parkinson-disease-and-your-marriage-advice-from-our-community

Senelick, R. (2016). Coping Tips for Caregivers of Those With Parkinson’s Disease. Retrieved from https://www.webmd.com/parkinsons-disease/guide/parkinsons-caregivers#1

WHP. (2017). We Have Parkinson’s. Retrieved from https://wehaveparkinsons.com/things-family-members-should-know-about-parkinsons/