Welcome to the APBD Tribe!

This site is driven by laymen who have personal experience in living with Adult Polyglucosan Body Disease. Here, patients, family members, and support providers share our collective discoveries about ways to blunt the impact of this progressive disease.  Please scroll down to find our most recent updates.  You’ll find ideas that might help you better cope with your symptoms,a connection with the oh-so-important patient registry, and more.  Or use our categories, tags, and search function to find the information most interesting to you.

The APBD Tribe website augments our monthly phone chats.  Check out the date and time for our next telephone meet-up! Please join the conversation.

Lastly, and very importantly, for information about the APBD Research Foundation, please click here.

Welcome to the Tribe!

 

Legal Stuff: The APBD Tribe (including the website, phone chats, and all other content) exists as a source of general information only. The contents discussed do not represent therapeutic recommendations or prescriptions. Users are advised to consult their personal physicians for specific information or advice.

Answering The Question: “How Can I Help?”

When we tell family and friends about our APBD diagnosis, many times the first reaction is, “Tell me what I can do to help.”

One great answer is to encourage people to participate in Amazon Smile. We recently posted about how it is both easy and free to support the APBD Research Foundation every time you make a purchase through Amazon. Please read that post for a refresher on what this excellent program is all about.

Tribe members Laura and David have already signed up and encouraged their friends and family to participate as well.  They’ve generously shared with us the email they sent asking for support:

Subject: The E. Family and its fight against Adult Polyglucosan Body Disease (APBD)

To all our friends and family: You’ve shown concern and inquired about the genetic disease that David and his brother have, and here’s a way you can help. If you buy things on Amazon (and really, who doesn’t?), instead of signing in to amazon.com, go to smile.amazon.com      Smile is the branch of Amazon that makes donations to non-profits like the APBD Research Foundation. Designate APBDRF as your desired donation recipient.

Then, every time you shop, sign in to smile.amazon.com. You’ll see that the top of the screen will read, “Supporting: APBD Research Foundation.” Shop to your heart’s content. The Amazon folks will make a donation to the Research Foundation when you shop through this site. It costs you nothing, and it helps a very small organization that spends over 90% of its funds directly on disease research.

One more thing: Would you take the time and pass this information on to your family members and friends?

Thank you,
The E.’s

Thanks to Laura and David for sharing their letter, and making it so easy for the rest of us to spread the word!

Help Others Get A Faster Diagnosis

Let’s help get the word out so more cases of APBD can be identified sooner rather than later. Did you know that the APBD Research Foundation has two new pamphlets that describe the disease? Some of our Tribe members have already begun delivering them to physicians, JCCs, kosher restaurants, rabbis, cantors and lay leaders in synagogues.

Image Courtesy of Keattikorn/FreeDigitalPhotos.net

Image Courtesy of Keattikorn/FreeDigitalPhotos.net

If you want to get involved (and we hope you do!) contact info@apbdrf.org. Ask for the pamphlets and the cover letters that have already been developed.

Speaking of APBD…

Get The Word Out!

Get The Word Out!

It’s tough to talk about Adult Polyglucosan Body Disease. Eleven syllables just to get the name out.  Even the initials are crazy. But wait! They’re not as crazy as they seem. They can actually help you give a quick description of the four most common early indicators of the disease:

Adult of Ashkenazi Jewish descent
Peripheral neuropathy/numbness
Bathroom frequency
Decreased energy

APBD is a progressive genetic disease that can strike as early as age 35, but more commonly it hits in the 40’s to 60’s.

We hope that greater publicity will make diagnosis less elusive.  Please share this information with friends, family members, urologists, neurologists and the Jewish community.

Sign Up For Amazon Smile And Support APBDRF

amazon2

Sign up at smile.amazon.com and your purchases through Amazon will generate donations to the APBD Research Foundation! Friends and relatives can sign up, too. There is no cost to the purchaser and the free money goes to a very, very good cause. Thanks to Amazon for providing us with such a great opportunity.

Amazon and the Amazon logo and AmazonSmile and the AmazonSmile logo are trademarks of Amazon.com, Inc. or its affiliates.

Ed Gray of FMCE shares ideas and information

During our April telephone chat, we were joined by Ed Gray from Florida Movement Centers for Excellence. Ed and his staff approach neurologically based APBD symptoms with an emphasis on brain retraining. Here’s the link to the FMCE website.

In addition to the GIGERMD machine that Ed uses for brain retraining, he also spoke enthusiastically about water therapy.   If your health care provider doesn’t know about the aquatic therapy medical codes used for insurance coverage, Ed offered these four for consideration:

  • 97112
  • 97110
  • 97530
  • 97113

Thank you, Ed, for sharing your expertise with us!

Fitness Options: Vasper Technology

APBD_Alma_on_Vasper_bike

Alma working out with Vasper Technology

Alma reports using Vasper technology to vary her fitness regime. Click here if you’re interested in learning more about Vasper.

Our Tribe member wrote the following thoughts for us:
My performance has improved, it is fun, manageable – very finite time. I will continue. Folks w MS, Parkinson’s, stroke are colleagues. I cheer them on before my turn and then while I am cooling down on the iced blanket. The fellow who operates the machine is my “coach.” He is great encouraging me, pushing me, never judging. I just heard they are in the final phase of making portable machines which is good news as Vasper will become more available.
Alma asked us to refer you to her blog about her experience.  Here you go!