Skip to main content

Waiting

I attended a conference this weekend where it was noted that it is the 200th anniversary of PD or at least when it came to be known as PD. In 1817, James Parkinson wrote an article on Shaking Palsy, today known as Parkinson's Disease.  The next big development in the world of PD was the  
development of Carbidopa/Levidopa as a medication to treat symptoms.  This happened in the 1960's. In the 1990's Deep Brain Stimulation surgery started  being used to treat symptoms. Lots of research is being done and newer treatments and meds are being used but there is still no cure.  

And so we wait.  I'm not good at waiting.  I tend to be impatient and like to take action.  So while I wait, I exercise.  While I wait, I research.  While I wait, I participate in research.  While I wait, I educate others.  While I wait, I do everything I can to keep my body, mind and soul healthy.   While I wait, I am participating in this wonderful life that God has given me.  While I wait, I pray.  Waiting is allowing me time to find my purpose on this rollercoaster journey.  God is in the wait.  

And so I wait.

Comments

Post a Comment

Popular posts from this blog

My Experience in the Clinical Trial for the New FDA Approved Subcutaneous Levodopa Pump

  It took quite a while but the FDA has finally approved a new way for people with Parkinson's to get levodopa. It is a subcutaneous pump designed by AbbVie. The medication is Foslevodopa/Foscarbodopa and they have named the new pump Vyalev.   Back in 2021, I joined the clinical trial. It was time intensive and I had to drive almost an hour and a half to and from the trial site once a week but I was excited to be part of a trial that I thought might make a difference for people with Parkinson's.   In a nutshell, I only got to wear the pump for about a month. The doctor overseeing the trial recommended that I stop because I was having a lot of bruising and swelling at the injection site and the meds were sometimes pooling under my skin instead of going into my system. I was disappointed to have to stop but I was hoping that my experience in the trial gave the researchers some info that would be helpful. Now that it is on the market, I want to try it again. So what w...
Post a Comment
Read more

Good News for Mice with Parkinson's

  Today brought us another exciting headline: "Scientists Discover Drug Already Approved by FDA May Slow or Stop Parkinson's."  Yippee, Yahoo, right? The reality is that it has only been tested in mice and "there is more research to be done." The research results will likely be many years away. I already feel like a lab rat using the current medications and treatments as doctors often admit, "we don't really know how it works." How do we speed up the research process? Too many people are suffering while waiting for treatments to get approved.   #parkinsonsresearch   #parkinsons   #scientificresearch #labrats   #frustratedmouse
Post a Comment
Read more

We Have to Make Wellness Happen

  As I inch closer to the eight-year anniversary of my diagnosis, it becomes clearer every day. If I want to continue to live well with Parkinson's, I must work intentionally at it. I need to figure out (with the help of my care team) what is needed and then do it. That might mean going to speech therapy. It might mean switching up my workouts or adjusting my diet (again). It definitely means that I will have to do some things that I don't feel like doing and if I want to stay well, I will need to continue this for the rest of my life (unless of course a cure comes soon). I have seen the result of hard work in myself and in many, many friends. Those who are putting in the effort are doing better than those waiting for something to happen.  We have to make wellness happen and it is hard to do every day. That is one of the reasons I think it is so important to be part of a community of others with Parkinson's. They are the ones who understand and the ones that can kick you in...
Post a Comment
Read more