Parkinson's Update For D - Moving Ahead

Dear Readers,

The Climbing Rose Bush (Seven Sisters) above is so gorgeous when blooming, but there is getting to be so much shade in our  backyard from our neighbor's tree that I'm afraid each year it won't survive.  The remainder of the flower bed below the trellis is a poor excuse for flowers.  Again, too much shade for sun loving plants.  Guess we'll have to do something about that next year. Don mentioned pulling everything out and just going with grass seed.  Stay tuned on that one.

We have some good news for Don - He saw his (our) Neurologist this past week.   We asked to have a DaTScan done on Don so he would have some peace of mind knowing for sure if he has Parkinson's or has Essential Tremors like I do. That scan will be done next Tuesday.

He also got a referral to another facility where he'll begin receiving two different types of therapy for Parkinson's patients:  "BIG and LOUD" is the name of the type of therapy.   More on these two programs later.   He'll be meeting with a therapist within a couple of weeks.

A very good friend in another state had seen information in her local newspaper on BIG and LOUD and sent it to us.   We are so thankful that she did because it looks like a very helpful program.  We did not even know that it was  available here.   

My back has improved every so slightly from the Aqua Physical Therapy I was doing plus the home exercises that I do daily.  I've also joined the CP Center again for independent exercise in their warm pool - 1 day a week.   

Good things are starting to happen around here - so stay tuned.

Mary

Remember When?

Dear Readers,

"We're having a Heat Wave.......We're having a Heat Wave.......A Tropical Heat Wave.........."   

Ah yes, I'm trying real hard to remember a couple of years ago in January when we had so much snow.   It's pretty hard tho when the temperature outside is 93!   Yup - 93 as in friggin HOT!   Oh, and the Dew Point was 74 today.   Our weather man says anything over 60 for Dew Point and you feel it. I've been drinking ice water all day, but that doesn't help much.   Thank goodness for Air Conditioning.

I've been running my errands in the morning and trying to make them "fast" ones

The weather man promises we'll get relief this weekend, after putting up with Tornadoes rumbling through.   In Wisconsin (yes, the Ice Bowl State) whenever we get temperatures like this, it is followed by severe storms, and they are already predicting tornadoes.  We're having a mini storm right now - high winds, buckets of rain, but the temperature hasn't dropped - no tornado tho - this time.

I know - I should quit complaining as many of you put up with this heat (and worse) for 2 or 3 months in the summer - every summer.  And we do have AC.  You do have my sympathy, but this is NOT NORMAL around here and my body says 'NO WAY!"  If I loved this HOT weather, I would have stayed in the south.    

Here's to cooler days ahead friends.  Hope you all remain cool and safe.  Until next time,

Mary

P.S.  Poor Mario doesn't understand why we won't take him outside when the sun is shinning so brightly.  He would probably be okay - for awhile anyway in the shade, but his humans would not be.

Thanks for listening to me grumble!  he he - I'm still HOT tho.

Essential Tremors Versus Parkinson's - Symptoms

Dear Readers,

Hello from Steamy Wisconsin.  The humidity is so thick you could almost cut it with knife (old phrase my mother used to say).  Not a breeze stirring either - downright  miserable outside.  Thank heavens for AC.

I've had a couple of questions regarding Essential Tremors and how it differs from Parkinson's.   They are closely related.   

In researching this in "The Parkinson's Disease  Treatment Book" by Dr. J. Eric Ahlskog at Mayo Clinic and also  webmd.com - Webmd sums it up the best.

 * Essential tremor is almost always worse when the affected part of the body is in motion than when it is at rest. Tremor associated with Parkinson's disease generally decreases or disappears when the person moves the affected part of the body.

 * Essential tremor is faster than the tremor of Parkinson's disease.

·* Small amounts of alcohol can noticeably reduce an essential tremor but usually have no effect on tremor caused by Parkinson's disease.

  * Essential tremor does not improve in response to levodopa, but it may be relieved with other medicines (propranolol, primidone, phenobarbital, or benzodiazepines).  (No kidding - I was on levodopa.)

  * Unlike tremor caused by Parkinson's disease, essential tremor will sometimes occur in family members.

As you can see, the two are very closely related. With ET, however, you don't get the frozen muscle problems that you end up with when having PD. In my case the determining factor after matching symptoms was the DaTSan, which clearly told the doctor my brain was showing ET versus PD.

Ha ha -I should have tried the alcohol test, but didn't.  Think I'll head for the kitchen after publishing this blog and see what happens.

I'm still taking only 1 tablet of the Primidone daily (but am allowed to take 2 daily). I'm doing quite well on this medication. As i have mentioned before, in some patients with ET the condition can turn into PD. There is no way of knowing and it's only a small percentage of people that happens to.

Oh yes, the back issue - I'm currently in Physical Pool Therapy.  It feels great while I'm in the pool, but then 2 hours later it's back to hurting and ice packs.
Hope you are managing to keep you cool this summer.

Mary

It's A Small, Small World!

Dear Readers,

This weekend we attended two graduation parties (tis the season).   On Sunday an amazing thing happened.   

The graduate's mom was introducing me to her own mother, her stepfather, and her mother's friend (we'll call her Lady H) and mentioned that Lady H was from a city (Beloit) that is 150 miles south of us.   Oh a whim, I asked Lady H if she by any chance knew Lady B, who is a very good friend of ours.   Beloit has a population of about 50,000, so you would expect her answer to be "no!"

Well, I nearly feel over when Lady H said Lady B happened to be a very good friend of hers and in fact, she was also a friend of the graduate's grandma.  Talk about a small world!  Who would have ever thought that would happen.

We had a very enjoyable time discussing mutual memories because they were also friends with another dear friend of ours (Lady BL who has passed on).

So many times I have asked someone from another city/town if they knew "so and so," and of course the answer is always no unless that person lives in a very small town where everyone knows everyone!

It's a small, small world after all!

Has that ever happened to you?


Mary

P.S.   This post was going to be about the difference between PD and ET, but I just had to tell this unusual story.

Honoring Our Armed Forces - Past and Present & News

photo credit: <a href="http://www.flickr.com/photos/7687126@N06/2523097574/">gb_packards</a> via <a href="http://photopin.com">photopin</a> <a href="http://creativecommons.org/licenses/by-nd/2.0/">cc</a>

Dear Friends,

I've had time this weekend to reflect on Memorial Day and what it means.   Our men and women in the Armed Forces put their lives on hold, leave their families at home, hopes and dreams are moved to the background, severe injuries, and limbs and life lost - all to protect us. The least we can do is honor them on this special weekend and especially remember those who have lost their lives serving in the military.   Take a few minutes this weekend to reflect on what it means to you.

I found the above picture and immediately fell in love with it because it could have been taken in Wisconsin.   Deer are apt to show up almost anywhere in our state except perhaps in the downtown area of a large city.  The picture in the header of this blog was taken in my backyard when the Magnolia Tree (northern version) was in full bloom.    Because the northern version is extremely hardy, the blossoms, branches, etc., are very different from the Magnolia trees in the south.  But, we'll take what we can get!

Thank  you all so much for your comments on my last post.   I will keep the blog and have already changed the name to http://ShufflingAlongWithPDandET.blogspot.com/   It's a little long, but since I'm technology challenged at times, I was afraid to change the title too much for fear of doing something wrong.   I didn't want Blogger to somehow get rid of my blog.  ha ha - yes, I'm a little paranoid with technology at times.

Sorry I haven't been around to read blogs much lately.   I'll start having a little more time now and my plan is to get back into visiting and reading.

Hope you are having a great Memorial Day Weekend.


Mary

Celebration Time

Photo from Public Domain Files

Dear Readers,

There is definite cause for celebration - I DO NOT HAVE Parkinson's Disease, but have now been diagnosed Essential Tremors.   Unfortunately, Don still has the PD diagnosis, but we'll get through that just like we would have gotten through both of us having the Parkinson's.   My next post will contain a brief explanation of Essential Tremors and how it compares to Parkinson's.  Stay tuned, if interested.

Wednesday, the day of the DaTscan was a long day.  We left the house at 6:00 a.m., picked up our son in law, who took over the driving.  Having a 9:00 appointment at the hospital, meant driving straight down with no stops.  It took a little bit of driving around before we found the right building to enter.  The gal on the phone neglected to give me accurate directions.  

I think I explained before that you have to drink a glass of water and take a pill, to prevent the iodine from harming your thyroid.   Then after a wait of 1 hour in the waiting room, it was time for the injection of iodine cocktail!     I felt nothing from that other than the poke of the needle.   Then came a 4 hour  wait where we could leave the building.    We chose to drive to the nearest Cracker Barrell for lack of knowing where there was any other restaurant.   It helped us kill time and we had lunch.

At 2:00 I had to report back to the hospital for the scan.   I wanted to include a picture of the machine, but now days with copyright laws, I didn't dare.  Let me just say it looks somewhat like a MRI machine - only half as long.   In my case they were only scanning my brain (guess I must have some brains then), so a conveyor belt system took me back to that opening.    There were two arms on either side of the opening that held two steel panels that must house the camera (so to speak).   Those arms moved  those large steel panels around in various positions around my face, head, neck, etc.   It was a little intimidating when the plates met in the middle blocking my vision from the room, but they slowly moved away and changed positions several times during the 1/2 hour scan.

When the scan was over, I was free to go home - another 2 hour trip north.   All in all, it is a very painless test/scan to have and isn't quite as confining as an MRI machine (when you are a larger person in a one-size-fits-all opening). If you ever have to have one, it really isn't anything to worry about or be afraid of.

Yesterday, Thursday, the doctor's office called with the good news.   The scan backed up her thoughts - I have Essential Tremors - not Parkinson's.   That is happy news as Parkinson's is a crippling disease - ET is not. although in some cases it can lead to  Parkinson's.  We'll worry about that when and if it happens.

Now what to do with the blog.  If I keep it, it will need a new name.   I originally started it as a type of reference as to the life of someone with Parkinson's.   

1.  I could keep it going with news on Don's progression (which is very stable at present).

2.  I could delete the entire blog.

3.  I suppose I could just make it a personal blog, but our life isn't very newsworthy at this age.

4.   I could change the name and write a little on ET, although there won't be as much to write about other than ongoing back issues (which are still present).

Any ideas out there.   I'll consider all of them because I really don't know what I want to do with it.

Thanks for sticking with us on this unusual journey.  It PAYS TO GET A SECOND OPINION!

Until next week,

Mary
   

Possible Misdiagnosis!!!!!!

Dear Readers,

I want to yell out GOOD NEWS, but I can't yet as it is not confirmed.   I might have ET (Essential Tremors)  instead of PD.   Ah ha - that's what I said when the specialist was talking to me.

On Wednesday I had an appointment in Milwaukee with a neurologist who specializes in Movement Disorders (Parkinsons, Essential Tremor, MS, etc.)   She had thoroughly reviewed my records before I arrived, and did the standard things each time you see a doctor -  check reflexes, watch me imitate her hand movements, and take a walk.   She also thoroughly quizzed me about the side effects of the Parkinson's drugs I had been taking -  symptoms before and after drugs, results, etc.   She spent a full hour with me in her office just talking.

It is her opinion that I have Essential Tremors rather than Parkinson's.   But, she wants me to have a DaTscan at her hospital in Milwaukee.   It will involve being there all day - drinking a special cocktail (do you want to come along?), inject another cocktail in a vein, etc.  That test will be the determining factor and will produce an image something like this:         

I wonder if I'll be radioactive and glow in the dark.  Woohoo!

I'm still in somewhat of a daze over this.  I'm not celebrating yet, but surely will when the final word is in.   I am thinking, however, that no wonder I was having so many side effects with the PD drugs.   Their purpose, I believe, is to replace the dopamine in your brain.   Well, if I don't have PD, but was getting PD drugs with extra dopamine, it doesn't take a scientist to figure out I was getting way to much dopamine.   No wonder I felt like I was totally drugged all the time - I  was.

Well, enough of that - the doctor did prescribe the proper med for ET, and told me to take 1/2 tablet at night to start with.   It does make me light headed for sure - one step down from dizzy.  Maybe that will lessen in time.   

Anyway dear readers, that's where we are at today!  My appointment for the DaTscan is May 1st - HAPPY MAY DAY!

It still isn't spring here even though the calendar says it is.  It's cold, rainy, and damp.   I'm trying to think S P R I N G !

Thanks for "hanging in there with me" on this journey -  we'll see where we go.   

Until next time,



Mary