Something Sweet with Susan

A year ago when I started this blog no one would have made me believe I would be writing about this topic! Comments on this site often thank me for being so transparent and keeping it real.  Today’s topic is personal and not something that is normally discussed with others.  I’m told it affects 80% of Parkinson’s patients – the struggle is real so here goes.

The Good:

I have to say the best thing that has come out of my experience with Parkinson’s is the people I have met and the friends I have made.  If you have it, you know there is a sense of community among those living with the disease.

The Bad:

There are several things I could place under this label and I have to say it’s a three way tie between the symptoms, knowing it’s progressive and having to live with a timer telling you it’s time to take your meds.

The Ugly:

Here it is, the main topic – CONSTIPATION. 

I remember a friend of mine in my 20’s who often talked about not being able to poop.  I had NO idea.  That had never been an issue with me.  About a month after my Parkinson’s diagnosis, I was introduced to a friend of a friend to discuss his journey with PD.  During our discussion he said, “This is personal, but do you have problems with constipation?”  I didn’t understand the question at that time, but have since learned that constipation is a big problem with Parkinson’s patients.

Having just experienced my first ever problem with constipation has me researching ways to combat the problem.  I know that I never want to be in the situation I found myself in during the past month.  After experiencing a pulling pain in my lower right side that went through to my back for 3 weeks, I ended up in the doctor’s office getting x-rays of my abdomen to verify what he thought.  And yes, he was correct when he suspected the diagnosis of FOS, aka Full Of Stool.  OMG, the struggle is real, but it’s still embarrassing.

Constipation is somewhat of a double whammy for PD patients.  These issues can be caused both by the disease itself and by the medications used to treat it.  Lack of dopamine (a neurotransmitter) in the brain impairs control of muscle movement throughout the body.  Bowel muscles can become slow and rigid.  The autonomic nervous system controls digestion, and in PD it is impaired, slowing down the digestive tract.  Many people who have PD notice difficulties with constipation before they notice motor symptoms such as tremor or stiffness.

Below are two links to articles that discuss constipation symptoms, causes, complications and treatments for PD patients:

https://www.michaeljfox.org/symptoms/constipation

https://www.parkinson.org/sites/default/files/documents/constipation.pdf

I am so proud of Michale J. Fox for standing up for Parkinson’s awareness and research.  When he was diagnosed at the age of 29 he could have left his public life and focused on himself and his disease.  He chose to stand up and make a difference for others.  So much of life is about choices.  I’ve always wanted to be the person that says, “I’m glad I did,” and not “I wish I had.”  I hope this information will be helpful to others in the PD community in which I live.

Since this has been an unpleasant topic I have to end with a funny story.  The church where I grew up was a small church that met every Sunday morning, Sunday night and Wednesday night.  There was an elderly, widowed woman that attended and I only remember her in a beige colored all-purpose coat.  She was known for standing up during the worship service, taking off her coat and neatly folding it over the pew in front of her.  Frequently during the evening services there would be a time for prayer requests and praises.  During an evening service she stood up and requested prayer for her friend whose bowels had become locked.  I promise on my life – this is no joke – the very next hymn we sang was “I Shall Not Be Moved.”  The entire youth group sitting in the back rows were doubled over laughing.  The very next week she stood up with praise that her friend’s bowels were unlocked.  I understand now that it is not a laughing matter but seriously, to a teenager in church, it was the funniest thing I experienced in church during my youth.  A few of my friends that were there that night will be reading this post.  I hope they remember the laugh as well.   I look back now and think it’s proof God hears all our prayers. 

“And pray in the Spirit on all occasions with all kinds of prayers and requests.  With this in mind, be alert and always keep on praying for all the Lord’s people.” 
Ephesians 6:18