Pakinson’s disease

Staying in Focus: I’m Back! (I Think)

I can’t believe my last post was in August, and here it is October already.  We didn’t travel  this summer, or do much of anything, really. I lacked inspiration.  Then we had some family matters to work through.  My 93 year old mom suffered through a second round of Shingles and required  our help in getting her to doctor’s appointments, and weekly visits to help keep up with her household chores.

On the positive side, we had a lovely visit with Bill’s sister Pat, husband Rick and son Matt. They brought us a grandfather clock , which had been a gift given to their mother from their father just months before she passed away. Before his untimely death this past March, he had expressed the wish that someone in the family would take the clock. We had a space for it, and everyone agreed that it looked like it had always been there. During their stay we browsed the bookstore, looked at new houses in the area, and sampled the fare of local eateries.

Our 40th anniversary was September 4th. We finally found a few free days last week to get away to the mountains to relax and de-stress, and celebrate 40 years together. I took some nice pictures of Echo Lake. The trees were just beginning to trade their overall green color  for splashes of color like crimson, umber, sienna, red-orange and yellow.

So I’m back, I think. We are about to start my favorite season, and it is a busy one. I am preparing for our Moving Day Event – A walk for Parkinson’s disease . Pat’s  Patrol (my team) will number at least 17 this year. And I am proud to announce that we have achieved  our team goal of $720.00 raised for the National Parkinson Foundation. This will be followed by Halloween,  Thanksgiving and, of course, Christmas, with buying gifts, wrapping, decorating, cooking, and visiting. with family and friends

So, I’ll try to keep up with posting (I wouldn’t mind a little snow this year. I love taking snow pictures!)

Here are some photos of Echo Lake:












Staying in Focus: A Bump in the Night

Sorry I have been remiss in writing this blog over the past few days but I have a good excuse. You see, I ran into a wall. Literally. I have always prided myself in being in control of my actions. I do not drink or use drugs other than those prescribed by my doctors. Therein lies the problem. Since my diagnosis of Parkinson’s disease in 2007, I have taken a drug called Mirapex. It helps to control my tremor.  However, one of its side effects is abnormal dreams. For the most part I have tolerated this side effect. My dreams are like watching or being in a movie, vivid and very real to me while I sleep. One of the first things I noticed, or I should say, my husband noticed, was that I would talk out loud on occasion. He couldn’t make out what i was saying, so he called it my “talking in tongues”. The odd thing is. I knew when this was happening because in the dream, I would be trying to shout at someone, or warn them of danger, and my voice would be very weak, no matter how loud I would try to be. I couldn’t speak in the dream because my voice was speaking out in he real world. I never woke up from these dreams with my heart pounding as from a nightmare. but often remembered them in the morning.

The next step was waking up to realize I had just hurled a pillow across the room, or being awakened by my husband because I was clutching his arm. I decided to nix the dose of Mirapex I took at bedtime  to see if that helped and the dreams diminished in intensity until last Saturday at 5:30 in the morning. I was very threatened in the dream I was having, and frantic to escape this man swinging a hook on a fish line at me, drawing closer and closer to my face. Still asleep, I must have  gotten out of bed  and charged across the room The next thing I knew my husband was shouting my name and running toward me. I had hit the corner edge of a wall in our bedroom, then fallen to the floor. It took a few seconds to orient myself and I put my hand to my face and felt blood. Bill helped me up, We turned on the light and I could see that I had hit my nose and the area over my left eye as the blood was coming from a mark on the bridge of my nose and the area above my eye was swelling.

Of course, this happened on a weekend, as usual. I felt okay – no headache, my pupils looked fine, no nausea and dizziness and I didn’t feel like hanging out in the ER for hours, so I just kept ice on the area, along with Vaseline, which i had read boxers use to reduce swelling. I spoke to the doctor on call for my neurologist and she reduced the dosage  a little more until I could see my doctor. Of course, I got a shiner of a black eye from the encounter with the wall, but more than that I was afraid to go to sleep on the chance it might happen again.  A friend suggested I get one of those body pillows to make it harder to  get out of bed in my sleep. I bought one and a cover for it, and pushed books in the bottom to make it heavy. That and 2 large bolster pillows on top make a nice fortress and I wedge myself between that and my husband, hoping he’d feel me trying to get out of bed. We have  a king size bed with a tempurpedic mattress, so unless we are close , one of us can get out of bed without disturbing the other one at all.

I saw my doctor and we are in the process of discontinuing the Mriapex. According to my doctor, when PD patients reach their sixties,  they no longer can tolerate the MIrapex. I had read that taking clonazepam before bed  can also help, as the dreams  are not solely caused by the Mirapex, but exacerbated by it. The tendency toward these dreams is a part of the Parkinson’s disease itself. Since I am already taking clonazepam, I now split the pill in half and take half in the AM and half before bed. Since making these changes, along with meditating a while before falling asleep, I have had fewer dreams  and  sleep through the night. I’ll just have to see how much tremor I have once off the Mirapex  and how I handle my anxiety splitting the clonazepam in half.

It is  a scary thing to have your conscious mind disconnected from your body. . In REM sleep, which is when we  dream, our bodies are paralyzed temporarily by something in our brains. This keeps us from doing what I did. In Pd patients and people with REM behavior disorder, this malfunctions, allowing the dream state to take control. I intend to research this  phenomenon further,

I hope by posting this, I can help other PD patients avoid what happened to me.In the meantime , I hope the doctors find a way to control this, so I can avoid going bump in the night ever again..