A Good Night of Sleep Can Have a Down Side

When you sleep straight through the night, you would think it would be nothing but a good thing. Parkinson's is selfish and can't just let a good thing be good. Going that long without meds makes for a morning of tight muscles, curling toes and tremors to set off the richter scale. Don't worry, once your meds kick in, you will feel better but your meds schedule is blown for the day along with your eating schedule because you slept through breakfast also so who knows what Mr PD has planned for the rest of the day. Hopefully you like surprises! #parkinsons #parkinsonsdisease #movementdisorder #parkinsonsawareness #parkinsonsblog

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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...

Attitude is Everything

I was never much of an athlete so when I found out that I had to exercise to stay well with Parkinson's, I was dismayed. Sweat and I never got along and still don't. Why can't Parkinson's be beat by eating M & M's? That sounds like much more fun. When I realized what a difference exercise made in my quality of life, I was sold. Intense exercise had to be part of my life like it or not. In fact, it helped so much that I wanted to help others realize it, and I got certified to help coach at the gym. I was feeling like a bad ass and that attitude has served me well. My Parkinson's has progressed over the past seven and a half years, although slowly, and some days can be pretty rough. I still find that calling out that bad ass chick inside me helps get through the tough times. I may have many more years to deal with Parkinson's so I hope that bad ass chick sticks around. My dear, sweet husband made this design and put it on a shirt for me. It is my reminder...

Diagnosing with Compassion and Hope

My hackles are raised, my feathers are ruffled, my … I’m not sure I can find the words for how I am feeling. This morning, I read a recently published article called “ Delivering the diagnosis of Parkinson’s disease-setting the stage with hope and compassion.” I am not upset that the article was written. I am glad that the authors have brought this to the attention of others. I am upset that it needed to be written. I just think it is common sense that when someone is given a life-changing diagnosis, it should be given with hope and compassion. The authors note that some say the moment of diagnosis is “almost akin to a traumatic event such as the loss of a loved one.” Of course it is! The person receiving the diagnosis is losing their future self. Everything they thought their life would be from that moment on has now drastically changed! I would count that as traumatic. I was...

Rock Steady Fighter

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