Online support

While in person support groups are great, they often meet only monthly.  How do you get your questions answered, hear a PD joke, or get in touch with somebody who understands your challenges and worries? How do you stop feeling all alone? That’s where online support comes in.

Privacy and security vary, but you probably have to assume that whatever forum you’re on is not all that private.  Generally you’ll have to register, and select a name to use (you get some privacy by entering a pseudonym).  I suggest you read everything you can about the website so you know what to expect. Generally you are expected to be courteous, and not to try to sell anything.  

But fair warning:  these support groups can be time sinks.  If my Fitbit didn’t buzz every hour, reminding me to get up and move, I could stay on support groups all day.

Here are a number of online support forums you may want to explore.

http://forum.parkinson.org/ from the Parkinson Foundation has different forums (such as Newly Diagnosed, DBS(Deep Brain Stimulation), Young Onset, Caregivers, Open Forum, Ask the Doctor) which you can read, search, and post to. 

https://www.myparkinsonsteam.com allows you to ask questions, make connections, and search for others in your general geographical area.   

https://www.patientslikeme.com/ collects and constantly updates physical condition, and treatments you’ve tried for a variety of ailments.  I found the constant requests for more information off-putting, and nothing seems to be private.  Part of the idea is to have a large group of people sharing detailed info, apparently to be used for research.  There are forums for asking questions, too.  I decided this wasn’t for me, but you may love it. 

Facebook has a number of support groups, often closed groups (membership is limited, and posts you make there should not show in your personal timeline).  Facebook groups often post something about their focus, and what they want to avoid (no photos of cats or grandchildren, for example).  Facebook groups include:

§  https://www.facebook.com/groups/pd.fighters.united/?fref=nf PDFU Parkinson’s Disease Fighters United

§  https://www.facebook.com/groups/1420381321604545/  Parkinson’s Alternatives Healing

§  https://www.facebook.com/groups/YOPD1/ Young Onset PD

There are other PD forums that don’t have that many posts yet.  For example, https://www.smartpatients.com was set up with APDA (American PD Association) in 2017, and it doesn’t have a huge number of members yet, but the conversations have been very interesting. Another with few posts so far is https://parkinsonsdisease.net/forums/

Caregivers forums 

Besides the forum for caregivers at http://forum.parkinson.org/ there are also caregivers’ forums at  https://myparkinsons.org/ and at https://www.caring.com/support-groups/parkinsons.  Caregiving presents plenty of challenges; caregivers need a place to share, too.

Specialized Support

Another group of people with specialized support needs is people with certain Parkinsonisms and related brain problems – PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), MSA (multiple system atrophy), FTD (frontotemporal dementia), CTE (chronic traumatic encephalopathy), and ALS (Amyotrophic Lateral Sclerosis).  https://www.psp.org maintains an extensive website with information, support groups (some in person, most online, since the numbers of patients are small), clinical trials, and more.  Online support groups here seem to be scheduled monthly discussions, not forums that you can drop into at any time.

Facebook has all sorts of groups that deal with specific conditions.  For example, there’s a Dystonia group (dystonia can be a movement disorder all on its own, or can be experienced as part of PD). https://www.facebook.com/groups/dmrf.gen/  

You can search on Facebook for your particular interest by using the Facebook search bar at the top left.

So there are many possibilities.  Get exploring, but then get up and exercise!