By Israel Robledo, PD research advocate
Advocating for new treatments and therapies through the years has allowed me to view the future with a sense of hope for what is to come. I’ve often shared that the latest medications on the market may not be for me for now, but depending on how my Parkinson’s disease progresses, at least I’ll have options to consider.
Disability concerns often fall in the same category. I may not need the help now because I am able to continue working full time without accommodations, but there may come a time that I will have to cut back or stop working altogether.
Disability issues seem to fall in three categories:
- “I’m not worried because whatever happens will take its course and I’ll deal with it when the time comes.”
- “I’m worried that I’ll become unable to work and I don’t know how to prepare for early retirement.”
- “I’m in dire straits because I have no one to help me. I don’t have a clue how I am going to survive without some type of financial help.”
On occasion, we read conversations about someone in the Parkinson’s community having filed a Social Security disability claim. They ask for help to navigate a complex system that may or may not declare them disabled, according to their standards. The conversation usually turns to what information is needed, where to find this information, and what to expect as they go through the lengthy process.
It is an unfortunate situation when the information that has been needed to document disease progression is not available because of a lack of communication with healthcare providers.
Being honest and forthright about the issues that we deal with daily need to be shared during follow-up visits and documented properly. And we must have access to this information. This medical information plays a vital role in whether disability claims are approved or denied.
Parkinson’s Disease Awareness month in April is a great time to raise awareness of a condition that leaves so many of us hoping for a better future. Education about what Parkinson’s is and what it is doing to our minds and bodies is also important.
It is crucial that we communicate with our healthcare providers and receive the best quality of care possible Doing so will ensure Parkinson’s disease awareness has the most meaningful impact as we travel on this journey with an as-of-yet incurable disease.