If you are reading this, you may know that I have amyotrophic lateral sclerosis (ALS) also referred to as Lou Gehrig’s Disease. I had my first telemedicine visit with my doctor last month. Telemedicine allows patients to stay at home and still visit their doctor. I had my visit using my iPad. The connection and setup are facilitated before the visit by technicians working with the Duke ALS Clinic. It’s not possible, of course, to see the multitude of other specialists that I would usually see during a visit to the clinic, but it does help to have an awesome doctor like mine.
My doctor is Richard Bedlack, and he comes to the clinic after his morning at the Duke VA Hospital where he is Chief of Neurology. Duke offers telemedicine for patients who have difficulty getting to the office for a visit. While it is not far for me to travel, I am now on hospice so this is another way to check up on me. The telemedicine offered at the Duke ALS clinic is supported by the NC Chapter of the ALS Association. You can learn more about Duke telemedicine by clicking on this link
When I visit the clinic, I am never rushed so that the doctor or any of the other specialists can get to the next patient. Every one takes the time to listen to all my questions and concerns and they take the time to get me an answer. Duke has assembled a great team of specialists to work with the ALS patients. My one concern, however, is that they do not have an ALS team available in the main hospital. As I described in a previous blog post (Blog Interrupted, March 23, 2018), it was a horrible experience in the emergency room that prompted me to write to the President of Duke University Hospital. The real problem seems to be that ALS is not a money maker for the hospital, just like many other rare or orphan diseases are not. The patients diagnosed with ALS are greatly outnumbered by diseases with treatments that are billable and can bring in a lot of cash. Telemedicine does not even have a billing code. My regular in-patient visits to the multidisciplinary clinic take place on Tuesdays. This is typically the only day Duke will allow the clinic to operate. Like I said before, it is a money issue.
I recently found out that the NC ALS Chapter did not reach its goal this year. The clinic and telemedicine services are very important resources for people living with ALS (PALS). Other PALS have organized fundraising events to help support the Chapter in its mission to help PALS and their caregivers (CALS). I am not able to do that. Instead, I am asking those of you who may have missed making a donation to my Team to do so now. If every registered participant raises $60 the goal could be met.
PALS need your help now. The cure for familial ALS is close. This will not help me, but there are so many other things that are supported by the NC ALS Association that helps PALS each and every day.
My Team page will be available until July 31. I did not join the Walk in Northern NJ this year. We raised a lot of money there last year. If my Team Kathryn North donates, we can help make this a reality.
Let’s do this! Click here to donate to Team Kathryn.