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.
Sharing my life and times dealing with Parkinson's Disease and everything else.
Thursday, August 25, 2011
Wednesday, August 24, 2011
Where have I been?
I haven't posted in awhile. Where have I been? Well, we went on vacation, we had house guests, we've both been working extra hard for extra hours... etc, etc. It's been fun, but stressful too.
I feel like I'm just starting to appreciate (if that's the right word) just how hard this fight is going to be. For the first time, I couldn't do everything I wanted to on my vacation, at least not without some reservations. I couldn't stay up with everyone and drink and play cards or dominoes all night long. I didn't have as much enthusiasm about decorating the table or arranging games or making fancy desserts or starting a singalong as I usually do; I was just too exhausted. My neurologist called my cell phone (on a Sunday, can you believe it?) and helped me work out a medication schedule that was a little better, and I had a lot of fun anyway. It would take an awful lot to ruin my good time when I'm with my family, that's for sure!
I just have to learn new coping skills, and I'd better hurry up, because Bob and I are going to Disneyland for our 26th wedding anniversary in September!
I feel like I'm just starting to appreciate (if that's the right word) just how hard this fight is going to be. For the first time, I couldn't do everything I wanted to on my vacation, at least not without some reservations. I couldn't stay up with everyone and drink and play cards or dominoes all night long. I didn't have as much enthusiasm about decorating the table or arranging games or making fancy desserts or starting a singalong as I usually do; I was just too exhausted. My neurologist called my cell phone (on a Sunday, can you believe it?) and helped me work out a medication schedule that was a little better, and I had a lot of fun anyway. It would take an awful lot to ruin my good time when I'm with my family, that's for sure!
I just have to learn new coping skills, and I'd better hurry up, because Bob and I are going to Disneyland for our 26th wedding anniversary in September!
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About Me
- Marian
- 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.