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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
HOOOORAY!!!! What good news, I'm so very happy for you.
ReplyDeleteWow! That is good news! Keep the blog!
ReplyDeleteThis is wonderful news. I'm sorry you more or less had to waste all of last year on those horrible debilitating Parkinson's drugs. I wish you the brightest future in the world to make up for it. Hugs from CK and TW.
ReplyDeletePS: Keep blogging and we'll keep reading.
I love that CK said and I se one every single word! Please keep on with the blog,too..
ReplyDeleteMary, I am definitely interested and delighted with your diagnosis. Please do keep your blog going.
ReplyDeleteWoo Hoo! Glad to hear the good news!! I think you should keep the blog as is, because we love to hear how you are doing. Please don't delete it :)
ReplyDeletePepiSmartDog: OH MY DOG !!! *SCREAM* FANTASTIC news for you Mary!
ReplyDeleteBrings tears to my eyes....seriously...*crying now*
So happy for you. (((HUGS))) XXX (tricky to type - can't see properly)
We are all doing a happy dance here and celebrating your wonderful news!
ReplyDeleteThis is such wonderful news! Thank goodness for the 2nd opinion.
ReplyDeleteI would think you should keep this blog and post about ET and how it can so easily be misdiagnosed as PD. Your journey to get to an ET diagnosis wasn't easy and I'm pretty sure you aren't the only one. So my vote is for you to keep this blog. :)
Woo hoo! *happy dance* So happy for you :) *hugs*
ReplyDeleteKeep the blog. It has good info on PD and a good reminder just why people want to get a second opinion.
Keep the blog xxx I am so happy for this good news
ReplyDeleteLots of tears of happiness for you Mary. Like everyone we are now checking on Wikipedia about ET. Please, please continue with your blog as I am (and bet so many others will be too) interested in treatment plans (medication, diet, exercise etc). I've read the comments above and rejoice with everyone in such a wonderful outcome. May we all help you flush those debilitating PD medications down the loo please?
ReplyDeleteThe best news! Woo Hoo! I am so very happy for you all. And I agree. Keep the blog. You never know what may inspire you and in turn us!
ReplyDeleteWow! That's very good news! I'd say change the name but transfer all the contents. It's nice to be able to read back your old posts.
ReplyDeletePiper
Lots of info available for ET Check out this website:
ReplyDeletehttp://www.essentialtremor.org/
This group is also on Twitter and has a Facebook page.
My ET is controlled with a medication called Primadone.
I'm so glad that you don't have Parkinson's! This will give you even more strength to help your husband! Have fun thinking of new blog names!
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So happy for you!!! Keep your blog just change it's name!!! Don't change anything else just the name!! You blog about anything that is happening in your life!! I am 77 and am boring as can be but no matter!!! It is still fun to make new friends and just move along life!!!
ReplyDeleteThat is so good to hear. Testing etc. does make for a long, long day, but in this case more than worth it. I agree, keep the blog.
ReplyDeleteThat does sound like very good news. You could continue to post here about both PD and ET, and there is a third condition that can be confused with PD, that my Dad had - NPH. So it could be an informative resource for people about movement disorders and your experiences.
ReplyDelete