Parkinson's Disease

Posted on: Wed, Jun 3 2009 3:12 PM

Posted by: Nana21546 Posts: 6

Is anyone on this thread that has ET (essential tremor)?  It is often confused with PD (parkinson disease).

Posted on: Wed, Jun 3 2009 7:30 PM

Posted by: afo49guy Posts: 789

Hello Nana21......,

My name is ollie. i have heart & lung problems.I waer a short brace on my fight leg because of foot drop.

I recently developed a tremor in my right arm. At this point we don`t know waht`s causing the tremor. My GP was able to rule out 2 possible causes - osteomyelitis and a stroke.On friday I`m going for an emg test on that arm. Then on the 26th I`m going to see a neurolgist.

Based on waht Ive learned so far  I think PD is the most likely culprit due to age of onset -60- and some other things. I`m also having a lttle trouble with my voice.Sometimes it gets very weak. but I`ll have to wait until the 26th to have any definite answer.

I got the impression essential tremor affects both arms. So far the tremor is only in my right arm. please stay in touch with me. thanks.                           ollie

Posted on: Thu, Jun 4 2009 8:34 AM

Posted by: Nana21546 Posts: 6

Hi Ollie, Thanks for writing. 

My GP wants to do a brain MRI, but I haven't decided to do that yet.  I found some info online about ET from the International Essential Tremor Foundation.  It is passed down thru a bad gene, my grandmother, father and 5 of 9 siblings has it, with me being the youngest.  Since they were older nothing was really known about it then, basically called "palsey", now it has a name!  "ET is a nurological disorder that causes hands to shake, heads to bob, voices to quiver.  For some it can also cause legs, the truck and even internal organs to quiver". ... (this is from the ET Foundation info). 

I am at the point where my internal organs quiver and it can be very frightenng.  At first I thought it was going on with my heart, everything was fine there after several test,.  So the doc looked at my ET and made the connection.  I still have a lot to learn about it and how to deal with it.

Please keep me posted on what your test outcome is and have a great day.

Nana  

Posted on: Thu, Jun 4 2009 9:19 AM

Posted by: afo49guy Posts: 789

Thanks, Nana.

Good grief! That sounds absolutely devastating. I was laboring under the delusion that ET was relatively benign.Thanks for setting me straight on that.

I wonder if you ever think, as i do, that you would like to give the guy who coined the term "essential Tremor" a piece of your mind? Essential and tremor are both words that are easily found in any dictionary yet  it seems to me this "genius" resorted to Orwellian doublespeak to hide his true meaning.

I honestly cannot recall any relatives who might have had tremors,etc,but i grew up in a family where such things were NEVER discussed and people who might have exhibited "distressing" symptoms were rarely seen outside the privacy of their own homes and we were told certain relatives were just too ill to safely tolerate the company of boisterous children. So who really knows?  In my family the ones that might have been able to answer such questions have all passed away.

I do recall that one of my grandmother's sisters was called  "simple" which was 19th century euphemism for mildly retarded. It seems to me that she led a very restricted, very sheltered life, but as a child I always thought she was the nicest "grownup" I ever met.

Qivering internal organs must be extremely distressing and it sounds like something that may lead to serious complications. Wow, you do have a plateful to deal with right now.Are there any support groups for people with ET?

I wnet to a support group for people with neurological disorders last night and met a lot of really nice people. They invited a pharmacist from one of the local drug stores as a guest and people learned some interesting and useful information about various meds from her .I consider it time well spent.And it was one of the rare occasions that wearing an afo and using a cane didn`t make me unique in a group of people.

I hope you have a good day also and really appreciate your replying to me, Nana .I will stay in touch with you. Thanks,         Ollie

Posted on: Thu, Jun 4 2009 9:19 AM

Posted by: afo49guy Posts: 789

oops!

Posted on: Sat, Jun 6 2009 5:41 AM

Posted by: afo49guy Posts: 789

Hello there Nana.

That EMG wasn`t done yesterday- I explained in different post but just want to let you know I`ll keep you posted and i know you will do the same. Have a wondeful day! ollie

Posted on: Sat, Jun 6 2009 9:35 AM

Posted by: Nana21546 Posts: 6

Hi Ollie, I got your post, thanks for the update.  I keep my 7 yr. old grandchildren (twins) during summer months and it is sometimes impossible to have computer time.  What was the test to be done for?  Is it to check cause of your arm/hand tremor?  I think I am a little behind on what all is going on.  I remember you have heart and lung problems and wear a right leg brace.  Would you catch me up?  Thanks, Nana

Posted on: Sat, Jun 6 2009 10:23 AM

Posted by: afo49guy Posts: 789

Nana21546:

Hi Ollie, I got your post, thanks for the update.  I keep my 7 yr. old grandchildren (twins) during summer months and it is sometimes impossible to have computer time.  What was the test to be done for?  Is it to check cause of your arm/hand tremor?  I think I am a little behind on what all is going on.  I remember you have heart and lung problems and wear a right leg brace.  Would you catch me up?  Thanks, Nana

Of course, dear lady. You are correct re hear/lung problems & brace. The EMG nerve conduction tear was to help determine the cause of the tremor in my right arm. I first began to notice it near the end of April and it seems to be getting worse.Both the frequency and duration seem to have increased.I was givne a prescription for primidone to hlp control it but its hard for me to evaluate just how effective its been without stopping taking it, and I`m not convinced that is neccessarily a good idea.There have been a few other hints that something serious may be going on.Someone remarked that the fact I often speak in a low, weak voice may be due to essential vocal tremor.Plus ther seem to be some other hints that things might not be entirely right either.

I was very disappointed that the test wasn`t done yesterday. Right now I`m totally in the dark.So I decided to work off some of that frustration by doing some yard work. What once was easy is exhausting. I wound up getting dirty, tired and some waht less frustrated.

I have no idea what to expect on my first visit to the neurologist. Because of the time involed, close to 2 hours one way and expense involved I`m hoping it will not be just a meet & greet, come back later & i`ll get down to testing. I feel like I`m coming to him completely unprepared, without test results or scans etc. I was told the neurologist strongly prefers to do them himself . I don`t mind that but  almost suspect I`ll be told come back in 6,8 ,10 weeks or longer out to get the tests done

.My wife will travelling with me , and since the neurologist`s office is located in a particularly nice part of the North Country, we plan to make a day of it and eat at one of the many nice resturants in the area.

Experience seems to have taught me that  whenever somebody says " Don`t worry about it", that is EXACTLY the time to start worrying.                                          ollie