Living With Parkinsons

May Flowers

Well, you know that all those April showers were supposed to bring May flowers.  Well, let me tell you that getting the yard ready for those flowers is quite a project,  I have made the difficult decision to smother the weeds with fabric, bark mulch and rocks.  Just in case of a break out emergency, there will be Roundup at hand.

 

The plan for today is to finish covering an existing bed.  The reason for the unfinished status is this.  Yesterday, I tipped over and fell.  I didn’t crash into any rocks, just flattened a few fern plants.  That was a good stopping place.  So today will finish this off and getting ready for the bark dust dump.


I’m not taking Ambien or Effexor anymore.  This was my decision to get off these pills.  It has been a good plan and I have less dyskinesia and don’t feel so confused.    I think it will only get better.  I would say to you…….always question why you are taking a medication.  I was taking Effexor for the wrong thing.  The sad part of this can be that your doctor will not want to have you switch or completely get off.

 

More later.

Confusion

There must be an old  Chinese saying about confusion.  I remember the time when there were a lot of “Confucius says” jokes.   I’m sure there should be a connection there somewhere.

I had  a neurologist/psychiatrist appointment on Monday.  I wanted answers to a question about a medication.  I had asked about this med for over a year.   My last neuro doctor would just put  me off with,”it seems to be working for you so ….” or “it wouldn’t have been the drug of my choice, but that doesn’t mean that it is bad”.

 

So,  this doctor was listening to my questions!!!!  I thought the drug was for anxiety, Effexor RX.  It turns out that it is really more for depression, which I’m not.  Depressed that is.  After a lengthy conversation about my background and up to current health issues, we  determined that I don’t need the drug.  So now I’m getting off the Effexor.  One less pill to take.

 

Now I’m curious about how this will or will not change my PD symptoms.  I don’t think doctors can tell you with any certainty how a “brain drug” will work for you.  They can tell you the expectations based on the chemicals and what the chemicals are supposed to target.

 

I’ve taken this drug for a long time…. as in years.  So I have no idea what life is like without it.  I’m voting for better.  However, we will see.  My tremors seem to be getting worse, but I’m not sure if it’s just time for that  to happen or what.

 

Do you understand why I chose confusion?  We’ll talk more.

Connections

Today I had a great conversation with a lady, Nancy, in Colorado.  She has had Deep Brain Stimulation, DBS, surgery.  The big  bonus is that she is a horse person.   YEA!!!!  She had her surgery in 2011 and is doing very well.  She highly recommended having surgery and told me her story.

 

I really appreciated the time she gave me and then Randy, her husband, called and gave John and I some perspective from the spouses’ point of view.  It means so much to have the personal conversation and not reading an article where you can’t ask questions.

 

I must mention that the cycling isn’t hard to make myself do.  I quite enjoy it.  Also, not having the compulsive behavior is a relief too.

 

We were invited to visit the horse ranch that they manage anytime.  Little do they know, we just might show up.

Back At It

Well, I’m back.  The winter has been long, and I’m so glad to see more sun peeking through the clouds.   Depression has been a constant companion this winter.  I’m not sure why, only that the PD is progressing and I just wanted  to stay home and hibernate.

 

Football. of all things, was the one thing that made me get out.  I was registered for my regular Friday morning paint class and Friday turned out to be our travel day for our Grandson’s high school football games.  It was Sumner’s senior season and it was a great.  The team was 11-1.  They lost their last game at the semi-final level.  On the go every weekend could have been tough, but the parents at the games were very welcoming to a couple of oldsters.  They even made us a set of personalized cow bells to ring.  We had a lot to ring about.

 

I switched art class to Tuesday afternoon.  Friday morning was not good anymore because wrestling follows football.  There is good change and there is bad change.  This turned out to be a good change.  My new instructor is very upbeat and the other students are very nice to know,  even when I march around trying to get my body to behave.

 

One of the side effects of PD is the involuntary body movements.  These happen whenever and last as long as they want.  These kind of episodes can be a problem in public and embarrassing for people around me.  That’s part of  wanting to stay home.  Staying home all the time is a downer, so go figure.

 

So now, yet again, I’ll try to also share the good stuff on a more regular basis.

Back At It

Have you noticed how easy it is to quit doing something, and how hard it is to start again?

 

Last year during the fall term, I gave up yoga and paint class.  We were spending a lot of time at our property which is about 2 1/2 hours east.  The place is semi-isolated with a beautiful view of Mt. Adams and lots of room for walking and looking for rocks.

 

The problem being, it took me a year to get myself back to yoga class.  I guess I’m just a slug at heart.  I know that yoga is really good for my PD and the girls are very good for my soul.  So why is it so hard?  Always doing what we know we should do isn’t an automatic choice.

 

So, I went back to yoga yesterday.  Had a wonderful workout and got the knock on the head, DUH, this is what you should have been doing all along.  That Thursday get up and go.  I talked my neighbor into going too, so that should help.  No excuses. Just Do It.  

I woke this morning to a cool foggy day.   My tremors were at bay and I was happy.  You learn to appreciate these brief times when they happen.

 

My daily schedule is very routine.  That actually helps with the symptoms.  So when this busy weekend was scheduled out, I thought OK it’s goin’a work.

 

Tuesday – PU new cards at printers, have to take some to Iowa

Thursday  Yoga

Friday – Breakfast with Bill and Cheryl

Saturday – fly to Iowa


Instead it’s going

Monday – car to mechanic

Wednesday – make calls for zoo contacts and PU cards

Thursday – Yoga postponed til 10:00.

This boring list can stop, because Wednesday,  I happened to contact a person that can give Backward Glances some exposure with the Oregon Zoo.   So we set up a meeting for Thurs 12:00 in SW Portland.  Well, when yoga time was moved, I had to cancel because of the drive time to Portland, and my car being in the shop means John will have to drive me.

 

Just remember, that sometimes people don’t process thoughts, etc. as quickly and as well as others.  It doesn’t mean that they can’t, it just means that they may require a little patience.

 

 

Lemonade

The other day I decided to make some real lemonade.  Lemons were on sale in the little mesh bags and the weather was calling for a refreshing drink.  I whipped out the juicer and was done in no time.  It turned out ok, but too sweet and I didn’t have any more lemons to make adjustments.

 

Somehow, this got me to thinking about hot summers and fresh lemonade when I was a kid.  Of coarse the farm house didn’t have air conditioning except in the winter.  Then the cold air would whistle in under the doors.  Our well water was cold and good.   Lemonade was the best.  Mom wouldn’t make iced tea  because the water always turned it dark and she didn’t like that.

 

The lemonade and a book I’m reading got me about the old saying “when you’re given lemons, make lemonade”.  So I’m going to strengthen my resolve to do just that.  I may have to plant a lemon tree.

Take Your Pills

 

I think my life is being run by pills per hour, or hours per pill.  I hope that this activity qualifies as a mental gymnastic that will keep my brain alert.

 

I’ve been taking pills for my PD for years now, and think I’m finally getting a handle on what they are supposed to do.  I know that sounds strange, but it is one of the hardest concept that I’ve come against.

 

Essentially, the pills cause my side effects of dyskinesia.  If I don’t take the pills, I will stiffen up and shuffle step in a slightly stooped fashion.   So I need to find the the thin line between over and under medicating.  So right now I can shake, rattle and roll with the best of them.   The inconsistency of the side effects add an extra challenge to the whole routine.

 

This is my little beef for today.  But I don’t want to end on a low note.  I have been learning some management things for my web page.   So you can see some of my new watercolor cards revolving around on the home page.

Take a look and see what you think.

Is It Parkinsons or Not

When things happen to me, accidents, I tend to blame my PD.  I have no idea if it is the PD or not, but I use it as an excuse anyway.

 

My list of episodes started with falling up the steps.  Both of my hands were full and my left foot didn’t clear the next step.  I ended up with bruises on knees, elbows and hands.  Next was a whack on the hand with a hammer that yielded a full hand swollen bruise.  Blisters on the bottom of both heels and finally slipping on the steps coming out of the 5th wheel.

 

I know that my balance is not what it used to be, but that shouldn’t turn me into a total klutz.  So what’s to blame?  PD?  I guess I should be glad that I haven’t rolled out of bed lately.

 

Meanwhile, I’ll go ahead and blame PD since it sounds better than blaming my age.

 

Take A Hike

We, my husband, dog and cat,  finally got to the property we own in Goldendale.  It’s a marvelous place for peace and quiet.  There are a lot of walking trails available on the adjacent acreage.  We recently found out we have 3 bears in the neighborhood.

 

Yesterday, I took a hike.  I wanted to see a paw print or maybe a shadow moving in the trees.  A friend went with me so I could show him some new trails.  He brought his GPS so he could mark interesting places.  I find GPS fascinating in that there is so much information available to those who know how to use it.  My friend said that there are some units that are very basic and easy to use.  People even use them to find their car in the mall parking lot.  But I digress.

 

We ended up hiking 3+ miles.  It was a great trek, but we didn’t see a trace of a bear print.  We did hear wild turkeys and jumped up a bunch of cows.

 

I was exhausted by the end of our walk and my left leg was starting to drag and my arms were shaking.  It was time to take more pills. When I’m walking in the woods, it doesn’t  feel like exercise.  I  can’t wait for the leaves to start turning.  There are a lot of oak trees and shrubs that will be so colorful.  I’ll push it again and make the walk because if you don’t use it you loose it.

 

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