In support of support groups

Went to my support group meeting last weekend, and I felt again like a swimmer in trouble finally getting her head above water to catch a gasp of air.  Now I can keep swimming for a while.

I know that a lot of patients are nervous about support groups; the idea of seeing people in later stages of the disease is scary.  I had misgivings too, but from the first moment we walked into the room, I was relieved to discover that meeting and talking with other patients is inspirational, not frightening or depressing.  I was a bit taken aback by the average age of the group, which was listed as a "Young Parkinson's" group; a lot of these folks were over 80, most were over 60, and I think that at 47, I was the youngest in the room.  One lady laughed seeing my expression and explained, with a twinkle in her eye, that they were all young when the group was formed!  The leader of the group is younger, and since then, more younger people have joined, but I have found that age doesn't really matter.  We're all in the same boat.

My husband and I both look forward to the meetings.  Not only are we very fond of all the people there, but it's also the only time we can share our experiences and feelings with people who know exactly what we're talking about.  I work very hard to not burden others with my fears, tears anger and frustration.  It's such a relief to be with people who understand these things and are not distressed by them and don't judge me by them.  It's also very therapeutic to provide some help and hopefully inspiration to others.

I find the people in my group so inspirational.  I can't name names, but they know who they are.  They (patients and care givers alike) are all struggling with this disease, and they all show incredible resilience and grace under fire.  Some of them have trouble walking, talking, or doing everyday activities, but they still laugh and tell stories and sing, travel and even dance in some cases.  They listen, they share, they help and most of all, they care.

I know support groups are not for everyone, but I would certainly advise every patient to try it, and their care givers as well.  It might surprise you, as it did me.

I am invincible!

Diagnosis day is here again.  It was five years ago today when I heard the words "Parkinson's disease" from my neurologist.  I was worried then about where I would be in five years, how much I would have to give up, what I wouldn't be able to do.  Well, it turns out that I have had to give up exactly NOTHING.  I can still do whatever I want to do, I just do it a little slower because it's harder to do.  Everything I do is a little victory, every day is a triumph, so how can I complain?

I AM INVINCIBLE !!!

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.

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!