The recent ice bucket challenge that has raised awareness and funds for ALS has been a huge success. What may have been overshadowed by this success is the reporting of the first solid estimate of how many people in the United States live with ALS – 12,187. It may seem like a small number but it helps many – from families to policy makers – understand what we are up against in solving that disease.
While the estimates of people living with Parkinson’s disease are much larger than for those with ALS, the fact of the matter is that our community does not exactly know the real number.
The following Q&A with Claire Berman, member of PDF’s People with Parkinson’s Advisory Council, discusses PDF’s PD ExpertBriefing: Occupational Therapy and PD: Tips for Healthy Living.
What role, if any, can an occupational therapist play in helping someone with Parkinson’s continue to enjoy a reasonable quality of life? A very helpful one, I learned from the PD ExpertBriefing led by Sue Berger, Ph.D. and Linda Tickle-Degnan, Ph.D. on September 9, 2014.
The media response to the tragic suicide of the gifted actor Robin Williams has included much speculation about a possible connection between his recent diagnosis with Parkinson’s disease, or the medicines used to treat it, with the depression that apparently prompted him to take his life.
At the Parkinson’s Disease Foundation, we are not privy to the details of his diagnosis, or the prescriptions he may have used to treat it. Nor do we have any information about any other drugs he is rumored to have used, or whether these may have contributed to his depression.
Photographer, Marcia Smith
The Parkinson’s Disease Foundation has long recognized the creative abilities that many people with Parkinson’s disease acquire when living with the disease. We even capture many of these expressions on our website with some of the best examples appearing in our acclaimed annual calendar (which you can now pre-order for 2015 here).
The following blog post from PDF Research Advocate Kirk Hall of Denver, CO is adapted from Kirk’s post on his own blog, shakypawsgrampa.blogspot.com.
Last year, I wrote a blog post about the World Parkinson Congress (WPC) in Montreal, which highlighted a, “movement toward more patient engagement in the PD world.” Before giving an update on patient engagement in my own community in Colorado, here is a brief excerpt from that post from October 2013.
Nearly two years ago, I wrote about how the US Food and Drug Administration (FDA) appeared to be ready to approve a new drug for neurogenic orthostatic hypotension (NOH), which, basically, is a precipitous drop in blood pressure upon standing. (I recommend reading that blog as a good primer.) That drug, droxidopa with the brand name of Northera™, did not win approval because of outstanding concerns by FDA.
Fast-forward to this week, and FDA has now signaled that it will approve droxidopa for the treatment of NOH.