Monday, December 25, 2017

Using PubMed to find out more about PD Research

This post was updated at: http://parkiesupport.blogspot.com/2019/12/using-new-pubmed.html since there is a newer version of PubMed.

If you are curious about a particular topic, the US government maintains a free database of medical research articles, called PubMed.  

You can search on a topic and it will give you basic information about published medical research papers (title of the paper, journal it was published in, date published, author names), with the most recent articles first.  You want to narrow your topic, because a search just on “parkinson’s disease” yields more than 95,000 articles.  If you narrow the topic to something like “parkinson’s disease industrial exposure” the numbers are much less, and you can quickly look through the titles to see if you want to read about any studies.

If you click on the article title, it’s linked to the abstract, a short description of the work and results.  

From the abstract, there is sometimes a link to the full paper.  Sometimes the full paper is free, but many times it’s not.  

You can email the abstract to yourself, and can email the list of papers, called a summary, to yourself.

Some articles are in PubMed right at the publication date, whereas others are not.  If you'd heard about the research, but it's not in PubMed yet, try Googling the journal, which may have the abstract available from their website.


The terminology can be dense, but the articles can be interesting.  Definitely useful for answering the question, “What does the research say?”   Helpful also when somebody is sure they know that something is a sure “cure.”  

Sunday, December 24, 2017

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

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!


Wednesday, December 20, 2017

Finding Exercise

                Everybody tells you that you need to exercise when you have PD.  But which exercise is effective, and who has a class near me?

                In terms of effectiveness, there was just a clinical trial on exercise published December 2017!   Splitting newly diagnosed PWP (People With Parkinson's)  who were not taking any meds into three groups, they found measurable reduction in progression of PD symptoms in the group that participated in vigorous exercise (in this case on a treadmill), there was less improvement in the moderate exercise group, and none in the no-exercise group.  Now, researchers are saying they need to see which type of exercise is better, if there is one that stands out. 

                Meanwhile, back at the ranch, what should you do?   Check with your doctor (in fact, many programs need a doctor’s signature), then look into programs like the following.  What’s available locally varies enormously but there are often choices.  (Hint: you don’t have to choose just one.)

Rock Steady Boxing (my personal favorite – so much fun, and has definitely improved some of my symptoms).  This is non-contact boxing – you don’t hit anyone – but you will work your body and mind vigorously, challenge yourself, and be challenged by the coaches, volunteers, and other PWP – all of them a special group of people.  The camaraderie and support are amazing.  I go without fail three times a week – and it is the best part of my week.  Select your state, or international location, and see if there is a program near you.   https://www.rocksteadyboxing.org/find-a-class/   

Dance for PD.  The organization has classes around the world.  To find a class, click here (first you‘ll need to click on your country) http://danceforparkinsons.org/find-a-class/class-locations   

Delay the Disease.  I do this program at the local Y.  It’s not as vigorous as boxing, but is good for balance, mobility, and stretching, all of which are important with PD.  Another collegial group, a  place for questions, and definitely a place where people will understand you.  To find a local program, click on http://www.delaythedisease.com/for-people-with-parkinsons/dtd-exercise-classes/  and enter your zip code in the search bar, or phone  614-566-1189...

Local Parkinson’s groups often collect information about available local programs.  For example, Parkinson Association of the Rockies https://www.parkinsonrockies.org/programs-services/exercise-classes

The APDA (American Parkinson’s Disease Association) has information about many exercise programs in states where they’re located.   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 Exercise Groups to get a list:


If you Google for classes in your state, you may find classes at medical centers, and possibly local PD-specific exercise like https://www.beatpdtoday.com/ .  Use the format Parkinson’s exercise statename like:


How does free fitness classes sound?  With the Silver Sneakers program, for people 65 and up, you can check your eligibility right on their website: https://www.silversneakers.com/  Then you can find fitness centers/gyms that participate.  I attended a terrific series of classes while visiting family – they focused on balance, coordination, cardio, and besides the coaches, had volunteers helping, and gave me helpful suggestions and a chair to hold onto.  Some gyms have special programs for seniors already, but because of the extra training involved for coaches, special PD programs may still cost something.

A phone call to the local senior center can help you discover classes at the senior center, and also gym programs locally.  I know you’re cringing if you have Young Onset PD, but the person on the other end of the call doesn’t know how old you are, and seniors have a lot of contacts. 

Try your local library, too. 

You can also call the 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.

There are a lot of choices, so what to do?  Besides talking about exercise options with their doctor (don't skip this step), a lot of PWP find exercise programs in their area.  Then they watch a class (or classes), talk to the coaches and participants. They may also have a chance to participate in a class.  

Often, a doctor’s signature is needed for participation in a PD exercise program, but that doesn’t have to mean waiting for your next appointment. When I needed my doctor’s okay, I didn’t wait for an appointment, I phoned the office to find out the procedure there, then mailed the form to the doctor with a self-addressed stamped envelope.  And my neurologist sent it back fast knowing how vital exercise is. 

You might find a class that caters to a general audience (Tai Chi or Yoga, for example), not to PWP, so you need to discuss it with the teacher, be aware of your own limitations, and don’t do something if it hurts.  Check with your doctor, too.


If you can’t go to a class, or prefer not to, you can still exercise at home (though you might want a family member or friend to spot you).  Check with your doctor, who is thinking of you avoiding injury, but who also may suggest a good resource.

Books/DVDs, streaming classes, exercise programs designed for PWP include:




Physical Therapy is another great source for very individualized exercise, but that’s a topic for another article.

Monday, December 18, 2017

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.



Why this blog?


When I was first diagnosed with Parkinson's, I was overwhelmed by the amount of information available, but I had so many questions:
  • What did I need to know?  
  • What was with all these different Parkinson’s foundations?  
  • Who could help me navigate?
  • Where do I find exercise?
  • Where do I find a support group?  

I also noticed that not everyone had same facility with internet.  From the questions that I see on patient forums, it’s clear that some PWP (people with Parkinson's) and caregivers just don’t Google things.


So my mission is to help PWP and their caregivers, especially those recently diagnosed, to identify what they need to know, and show them where the information is.

Great tools to use during the Pandemic

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