How to find local support, exercise, speech therapists, physical therapists, and clinical trials

Here is where doctors, patients, and care partners can find local resources easily and quickly:

To find a local PD support group, use Google.  Enter support Parkinson's your-state-name (or your city name)  You can also try at PMD Alliance, which is working to build a US-wide list: https://www.pmdalliance.org/resources/support-groups/)

To find local exercise PD .exercise groups, use Google.  Enter  exercise Parkinson's your-state-name.

If you live in Connecticut, information about support and exercise has already been compiled.

To find local physical therapists who have experience working with PD, click on the APTA website and enter first your zipcode, and then select Neurological.

To find local speech therapists who have experience working with PD, you can select people based on the program they have been trained in:

• LSVT Loud
• Parkinson's Voice Project

Finally, if you would like to find Clinical Trials in your local area, use the Clinical Trials website.  

This is the basic search screen.

Here's an example of adding PD, "recruiting", your location, and how far you'd be willing to travel.

 (For more information, read this short article.)
Magnifying glass image from Pixabay.

What I wish I had known... being first diagnosed with PD

It was December 20, 2016.  It was like a bomb went off close by, so I couldn't hear anything for awhile.  My neurologist had made sure it wasn't MS/stroke/Lyme/vitamin deficiency and a host of other things that look like Parkinson's, but aren't.  I was pretty sure he was going to say I had PD - after all, my mom and her brother both had it, and I knew something was very wrong.

But hearing the diagnosis confirmed...  I didn't hear anything for awhile.  Fortunately, my husband and daughter were both there to listen.

I read a lot then, but not everything soaked in, because in the background my mind was shouting, OMG OMG OMG OMG OMG...

What I wish I had known immediately, because it would have helped me focus on living (and might have helped my family, too):

Exercise is critical - not only will it help you feel better, but if vigorous enough, it seems to slow progression and improve symptoms.  Fortunately, I already had an exercise habit at dx (diagnosis). For more.

Find other pwp.  They provide support, they understand, and they have resources.  Support group, online forums, PD exercise group - all places to find your new peers.  Set aside your assumptions about age, or gender.  You have a lot in common.

Watch out for snake oil as well as for the over-enthusiastic press.  There are people who want to make a buck out of your worry.  See here   and here  and here  and here and here.  And the press will report that there is a cure  - but it turns out the hopeful results were in ...  mice.  It's important to find valid sources for information - talk show hosts, internet advertisements, and your brother-in-law's cousin's buddy are not it.  I heartily recommend The Science of Parkinson's.

Alternative / complementary medicine has not been found to cure PD, but it can help make you more comfortable. So.  Why.  Not?

Find a movement disorder specialist - a neurologist who has extra training and experience with PD.  You may see your primary care doctor or your neurologist more often, but a MDS can make a huge difference in diagnosis and care.  And be sure you can phone/email/patient portal when you have questions or concerns; getting your medications/dosage right or dealing with an alarming new symptom are not matters to wait for the next appointment in weeks or months.  In the US, you can use https://parkinson.org/Living-with-Parkinsons/in-your-area.  Or email your location to info@movementdisorders.org.

Be proactive.  I am not sorry that I found a good physical therapist who is experienced with PD.  Or that I found a good speech therapist.  And saw them when my problems were minor. Specialists like these can really help you now - don't wait until you can't get out of a chair, or you can't swallow or your voice is so quiet that nobody can hear you.  They can give you exercises that will help you stay on top of symptoms before they get overwhelming.  (I remember to do all those exercises by pairing them with an activity - like feeding the dog, or being in the car - that reminds me to do them.)

Read Every Victory Counts, published by the Davis Phinney Foundation.  This includes the voices of pwp and their families, addresses complementary therapies, as well as more mainstream therapies.  It is focused on living your best life now, and is much more helpful than many of the conventional books written by physicians. Available for free download and sometimes also in paper - free.

Recognize that this may be as hard for your family to grasp as it has been for you.  Some will be in denial, telling you that It's all in your head.  Sometimes because they don't deal with illness well.  Sometimes because this shifts your roles - maybe you were the caregiver and that can't be any more.  Some will have opinions about your choices for treatment, forgetting that these are your choices. While they are adjusting, being with other pwp is very helpful. Take family to a support group, too.

Live in the present, but plan for the future.  Grab bars in the bathroom.  Living will and other legal papers.  Investigate the care you might need down the road. My mom needed, eventually, 24 hour care, because she could not stand or walk; not everybody reaches that point, but you may have to deal with it.  And don't assume that your spouse can do everything - because even a few hours of physical care can be exhausting to provide.

If you're inclined to participate in finding better therapies, then explore being part of a clinical trial - a scientific study to find out more about possible PD treatments.

Focus on what you CAN do.  At the start, PD will remind you of what's hard to do, and you will have this loud volume reminder (OMG I have PD), but if you are wise, in time you just move on to what IS.  This is not passive resignation, it is facing reality but living your best life anyway.  Michael J. Fox provides a great example of this (but so do many, many others).

This one is hard:  accept help.  And even harder:  ask for help.  Getting my cane was a revelation; so many strangers held doors for me. I don't always need it, but that handicapped parking sticker is a Godsend when I do.  Exhaustion does not make PD better.  People really do like to help.

What's the difference between Parkinson's and Parkinsonism?

                From what I can tell, Parkinson’s Disease, good ol’ PD, is one form of Parkinsonism.  Then there are diseases that look like PD, but aren’t, including PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), and MSA (multiple system atrophy).  These often look like PD at the start, but differentiate later; they can also progress more rapidly than PD.  Just to make it confusing, there is the non-tremor-dominant form of PD (you have PD but no tremor), which progresses more rapidly than garden-variety PD (though each person’s PD is so individual, I’m not sure what “garden variety PD” means). Oh, and some of these don’t generally respond to anti-PD medications like levadopa.  These are much rarer than PD, too.  (And if you try to Google search on CBD, for example, you’ll discover that “CBD” is also shorthand for cannabis oil, quite a different thing altogether.)

               Why should you care about Parkinsonisms?  Well, you might be diagnosed with one of these if you don’t fit the mainstream of PD.  I don’t have tremor, so I have a Parkinsonism.  I really, really hope I just have the non-tremor dominant PD.

                There is so much symptom overlap, that nobody knows what you have for sure until they look at your brain during an autopsy - useful for research, certainly, but no help to you personally.  This means that you could still have PD and can benefit from PD support groups and exercise classes without guilt.  You can even participate in some clinical trials.

                Frankly, if you’re progressing slowly or you don’t have a Parkinsonism diagnosis like “possible CBD/MSA/PSP” you should stop here.  This is where we get into “there are worse things than Parkinson’s” territory.

                 Fortunately, if you need more information, there are several places to go:

• http://www.epda.eu.com/about-parkinson-s/types/corticobasal-degeneration-cbd/  The European PD Association has a good description of many of the Parkinsonisms.
• https://www.psp.org/   CurePSP has information about multiple Parkinsonisms such as PSP, CBD, and MSA, among others.  They also have information about online and in-person support groups. 
• www.theaftd.org/  Association for Frontotemporal Degeneration   (they have information about PSP, CBD, and others)
• https://www.multiplesystematrophy.org/  Multiple System Atrophy Coalition
• https://rarediseases.org  National Organization for Rare Diseases
• https://www.brainsupportnetwork.org/education/atypical-parkinsons/ Brain Support Network (supports families dealing with PSP, MSA, CBD, and Lewy Body Dementia, and supporting brain donation so that more accurate diagnosis is possible)

The US’s National Institute of Neurological Disorders and Stroke has information about symptoms and related organizations.  For example:

• https://www.ninds.nih.gov/Disorders/All-Disorders/Corticobasal-Degeneration-Information-Page#disorders-r3  CBD
• https://www.ninds.nih.gov/Disorders/All-Disorders/Progressive-Supranuclear-Palsy-Information-Page PSP
• https://www.ninds.nih.gov/Disorders/All-Disorders/Multiple-System-Atrophy-Information-Page MSA

                Why have I gathered this here?  Because I found this information mostly by following breadcrumbs – wandering around and stumbling on it.  The https://www.NINDS.nih.gov  website has a lot of this information, but I didn’t tumble onto it for months.  It is scary enough to be given a Possible Parkinsonism diagnosis, without information, too.

Image from Pixabay.

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!

Finding support - support groups

One of the hardest things was finding a support group close to me.  I was desperate to talk to somebody else who was going through this.

Turns out there are a couple of places I found to check out:

If you prefer the telephone, you can call Parkinson’s Foundation Helpline at toll-free Helpline at 1-800-4PD-INFO (1-800-473-4636).  Their Spanish Helpline is at the same number.

If you prefer the internet, there are two places I found helpful:

                1) American Parkinson’s Disease Association- has information for many local areas (though not all resources, they have a lot).  Go to https://www.apdaparkinson.org/community/    Enter your zipcode or state. You'll see something like this:

Then click on Resources and Support, and then on Support Groups to get a list:

                But ADPA isn’t everywhere, so look for other local PD groups, like Parkinson Association of the Rockies https://www.parkinsonrockies.org/programs-services/support-groups  They cover  Colorado, Wyoming, and western Nabraska.  See #2 below for how to find other organizations/support groups.

                2) Since APDA has an incomplete list (although they have a lot), you may want to dig deeper.  Using your web search engine (Google, Bing, DuckDuckGo...) you can look up support groups for your area.  I suggest that you use your state, since the perfect resource might be one town over from your town, and you’ll miss it if you only ask for your town.  I’ve found that “near me” search wasn’t as helpful either; your results may vary.  Here’s the search that I found the most helpful.  Just put in your own state name.

                Google parkinsons support group statename

APDA will be there, but other groups may show up, too.

                Also, ask your doctor, your local senior center, your dentist, your physical therapist, the school nurse, everybody.  You never know who has a family member with PD who might know of useful resources. 

When you find information about a support group, make sure to get a contact person and phone/email.  Don't just show up because the time or place might have changed. Reach out to the contact person – they can tell you lots, including sometimes the name and contact information of the person who is running the group now (this is volunteers, remember).  Find out when the next meeting is, and if there is a particular topic being discussed.  Often this is a good person to ask questions of, too. 

Don’t assume that you won’t have anything in common if you are younger than the “typical” PWP;  yes, it would be good to find a Young Onset PWP Support Group, but sometimes age is just a number.  Having PD in common is often an instant ice-breaker; you probably won’t have identical symptoms, but the things that drive you crazy, and the worries, will often be the same.   

Also, you might want to check out several support groups.  Each has its own character and strengths. 

I found a great group, but they meet the same time I have boxing, and I don’t give up much for boxing.  So I go to a different group unless the first group has a program is of special interest to me.  

A support group is a great place to ask about doctors you are thinking about going to, responses people have had to treatments, and just about anything else you can think of.  It is wonderful to be in a room with people who understand what you are going through, what you are feeling, and who may become wonderful resources for you. 

Finally, there are online support groups, too.  But that’s a topic for another time.

Hand image source