Thursday, August 25, 2011

Unexpected symptoms of PD (to me, anyway)

I knew about tremors, rigidity and bradykinesia.  I knew about dyskinesia, fatigue and "wearing off".  For some reason, though, I was surprised when some symptoms hit me.  Here's a short list of the Parkinson's symptoms that surprised me:

Hallucinations:  a medication side effect which I knew about, but startling nonetheless.  It's disconcerting to see a person (a stranger, no less) standing in the doorway as clear as can be, then to see her disappear literally in the blink of an eye. I've had my meds adjusted since then, and she hasn't been back; nor has the truck I thought I saw in our driveway.

And speaking of blinking eyes:  DRY EYES; big problem.  PD patients apparently tend not to blink as often as they should.  For me, this led to eye pain, swelling, ulcers on the eye, and photophobia.  Remember to use those artificial tears if you have this problem!

Pain: caused, in my case, by dyskinesia in the muscles of my neck, back, arms, feet and sometimes hands.  I had no idea how painful this can be.  It's hard to treat, too, but there are treatments available.  I'm just grateful that they seem to work for me.

Inability to concentrate:  I used to love to read; it was one of my favorite activities.  My family always made fun of me because I even read in the shower!  I haven't read anything lengthier than a crochet pattern in at least 2 years.  It's extremely difficult to keep track of which words I've read and which I haven't; as a result, I find myself reading the same sentence over and over and over...  Driving is becoming difficult too; hard to process all the things I need to.

Stuttering:  Very annoying!  It inevitably happens when I'm speaking to a group, especially if I'm giving a presentation

THE GOOD NEWS:  All of these things are treatable, though some require a trade off.  You have to target the symptoms are the most annoying and/or disruptive.  No problem!  I can do that...

I forgot one: being always either too hot or too cold.  It seems that I'm either sweating or shivering all the time.  It feels a lot like hot flashes, but it's related to being "off".  Sometimes it's kind of convenient, I have to admit.  If it's too cold to get out of bed in the morning, I just wait for the "hot" cycle.


Gina said...

Hi Marian,
My name is Gina and I recently found your blog. My dad has had Parkinson's for about 12 years now and I am really grateful I found your writing. I actually wanted to contact you because I am in school for massage therapy right now and we are required to do a research project on a pathology of our choice (I picked Parkinson's.) I wanted to include some of your blogs (snippits of your entries) in my research to get more of a personal aspect to the research as well as put a name to Parkinson's to make it more relateable to those in my class. If you aren't alright with that, I completely understand and I will not include your writings. Thank you so much and I look forward to hearing from you. Marian, I also just wanted to say that I think it's a really incredible thing that you're doing, writing these blogs. Not only do you help people that have Parkinson's and may feel confused or alone, but you also help family members, like myself. So thank you for that. Again, please don't feel badly if you wouldn't like me to include your writings, I know it's a lot to ask.

Marian said...

What a sweetie you are! I would be proud and honored to contribute to your research project. This is the main reason I started this blog; to share my experiences in the hope that it might help others. When I was first diagnosed, the most helpful thing for me was to read others' accounts and to talk with other patients. Come to think of it, that's still true. Being a caregiver or a loved one of a PD patient must be very difficult; many times, I've thought to myself that my husband's role in this is actually harder than mine.

I would love to see your project when it's done, and maybe post some or all of it, if it's possible and if you don't mind.

Thanks so much!

Guitar Man said...

Marian, We go back in the blogging about PD community (We Will Go On). I exited and now just writing about blues music, guitars, and thoughts about all of the above. I still like to pop in and see what is up on your pages. This list of unexpected symptoms is very real and makes sense from my perspective as a patient. I have been on my road for 6 years now-- how about you?

Marian said...

Hey, Guitar Man! How are you? You must be well; if you're strumming, you're winning, I always say. I've been traveling this long and winding road for 5 years now (the neuro says more like 8, but I was officially diagnosed in 2006). The path is getting steeper, but I'm still walking!

Good to hear from you; thanks for the comment!


About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.