Skip to main content

Not Your Grandfather's PD

April is Parkinson's Awareness Month, a time to shed new light on this jumble of symptoms that we label a "disease."  If you ask people what they know about PD, many will say that it is a disease that old men get that makes them shaky, stiff and unable to walk.  That may have been true for most people with PD years ago but things are changing.

The average age of onset is 60 years old and  according to the Fox Foundation, 10% of PWP are diagnosed before age 50. So much for it being an old person's disease.  Sixty thousand new cases of PD are diagnosed each year and men get PD at a rate of 2:1 compared to women. That means that there are a lot of both 
men and women suffering with PD.

Although no cure is forthcoming, research is being done and treatments are being developed to manage the symptoms and slow down the progression of the disease.  Yes, research is showing that it can be slowed down!  Studies are now showing that exercise can slow the progression of PD. We now have many medication optionsand for some of us, even surgical options to reduce symptoms.

We have work to do to stay healthy while we wait for that ever elusive cure but at least we have options available to us.  For me that means hope...for a higher quality of life, for a full future, and yes, someday, for a cure.  This is no longer my grandfather's PD, it is mine and I will fight it with all I have.

Posted on 

Comments

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...

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...

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