Exploring some helpful Parkinson’s resources available online
A social worker shares the tools she recommends to patients
Besides my husband, Arman, we don’t have any friends or family members with Parkinson’s disease. However, we do have a relative, Rose Brown, who’s a social worker working solely with Parkinson’s patients. She’s the Parkinson’s program coordinator at NewYork-Presbyterian Hospital and the sister-in-law of one of my favorite nieces.
Rose contacted me to learn more about Parkinson’s News Today and how she can use it to assist her patients. I explained to her that our website is a fantastic resource for keeping up to date on Parkinson’s-related news. Besides the wonderful columns and informative resource pages, the site is constantly updated with specifics about clinical trials, upcoming therapies, medications, nondrug treatments, and more.
Now that I had an expert on the phone, I asked Rose to share any helpful hints she might have for my readers and me. She immediately directed me to the American Parkinson Disease Association (APDA) website. While I’ve visited the site before, I never realized the wealth of information and tools available there. I couldn’t wait to get started! I wish I’d known about this resource when Arman was diagnosed.
APDA’s offerings
Have you ever considered tracking your symptoms? Well, the APDA has a free symptom tracker app for cellphones. I’m working on getting it set up for Arman. It’s perfect timing, as he’s switching to a generic version of one of his medications, and it’ll be helpful for him to track his symptoms and note any changes or reactions. The app also has a section for appointment reminders, which may benefit some.
When Arman was diagnosed in 2009 at age 38, I struggled to find any helpful information for our young children. At that point, the only books on the subject that I could find were about a grandparent having Parkinson’s, which wasn’t useful for us. But today, the APDA site provides a booklet specifically for children whose parents have the disease. I wish I could’ve read it to my kids back then.
Speaking of early-onset Parkinson’s, the APDA has some great advice about employment, which is a concern for those diagnosed before they’re 50. The site also covers disability benefits, which is useful for all ages.
In addition, the site offers many options for getting involved in fundraising. You can join a planned event in your area or create your own. The options are seemingly endless, and the APDA makes it simple to find a way to participate.
Many thanks to Rose for enlightening me on some of the resources and information available for people with Parkinson’s disease. The APDA website is just one of many that provide educational tools and support. Ask your neurologist or movement disorder specialist for suggestions on other reputable sites.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Comments
Vicki L Purscell
Thanks for the information ,so difficult to get access to information on PD,never realized how devastating it can be till I was diagnosed!!!! Living with for 4 years now,but I believe longer without diagnosis!!!!
Jamie Askari
Hi Vicki! I agree that it can be very difficult to find good resources for PD. I wish you all the best, and thanks for reading!
Susan Angel
Financial help with Parkinson's medications: If you're struggling to pay for your Parkinson's meds, you may qualify for several grants to help. My sister was low socioeconomic after many years with Parkinson's, with an Income of a bit over $3K/month. First, I learned of the Patient Access Network. They have funds for various diseases. They paid for most of my sister's Parkinson's meds, in full for several years. They had a cap on the amount they covered per year, but it always was enough. Then, I learned of The Assistance Fund and completed their application. They do not have a cap, thank goodness, since she now takes Nuplazid, at $5K+ for a 30 day supply!Also, I've found she qualified with Rx Advocates for 2 Glaucoma meds which the other funds would not cover. They are not considered to be due to PD, so are not covered. Finally, Pfizer covered a bladder med, Toviaz,for quite awhile. Later, it was considered to address a result of PD & is now covered by TAF & PAN grants. about. If you're struggling with finances this might help you.
Jamie Askari
Hi Susan, thank you for sharing this resources. I think this will help to many out there struggling with the high cost of medication. Appreciate you reading!
Priscilla Brennan
Glad to find this Helpful!
Jamie Askari
Hi Priscilla, thanks for reading!! Happy to help ;)