Looks Like PRIMIDONE is THE Medicine for ME

Some medicines have what is called a Honeymoon Period, where they work really well for a short period of time, and then stop helping. I have had some like that in the past, probably including the Sinemet that was originally given as a Challenge - a way of semi diagnosing Parkinson's. I did get much better way back then, but had such nausea issues with it that my Neuro did not keep me on it. I had good effect from the Requip that he changed me to, but then had to add Zelepar to that. So maybe none of them were anything for me but Honeymoon Drugs.

So, even though I have been so elated with the wonderful response I had to the Primidone, there was always a tiny little corner of my brain that wouldn't give up the Honeymoon idea completely. I have been on it now for over a month, with only a half pill added to the original dosage, so I think I can consider this one to be a KEEPER.

Not that I am 100% back to "normal". But then, since I am 65 now I'm not sure I know what normal is any more, anyway. LOL!! What I do know is that I enjoy talking to people again, I laugh a lot, I don't jerk nearly as badly even on my bad days, and I feel truly blessed by God with this wonderful miracle. Hey, that's a "normal" I can LIVE with!!

We don't have cable or satellite, so, as the resident geek, it's been up to me to try to figure out how to set up the HD Converter boxes we bought using the Government Coupons. We want to be able to continue to tape one show on our VCR while we watch something else, and that requires some very complicated hookups. There is so much about the words and terms they use in explaining all this that I am totally unfamiliar with. So, our boxes arrived in the mail a few days ago, and I have spent almost every waking minute trying one hookup, testing it, undoing it, trying another, repeating some over and over as I gradually understood the meanings of the directions and went back to correct mistakes I had made.

PHEW!! I was finally satisfied Friday evening that I knew how to do it, but I needed one piece of equipment that we did not already have. So, armed with my diagrams and the catalog numbers from the internet, we went to RadioShack yesterday. The young man took a look at the diagram and let out an involuntary "UGH!". I agree totally.

Well, to make a long story short, he thought I would get better results with a different device than I had come in to buy, so I took his advice. I spent all yesterday evening, plus got up bright and early this morning, trying to make it all work with this new device, and finally decided he was wrong.

Hubby always goes out on his own on Saturdays, so he took it all back and exchanged it for the switch that I had originally decided would fix it all. I'm all ready for it when he gets home, and more than ready to quit spending all this time and energy on this stuff.

The stress it has put me under has been overwhelming, knowing that there is no one who knows enough about this stuff to be of any help. I've been angry and miserable, one after the other, over and over since Wednesday when I started on it. Hubby has left me ALONE!!! And I am glad that he has. He always thinks he can tease me out of a bad mood, but this time I think I would have bitten his head off if he had tried that with me. I never used to get angry like this. I was an only child and a "good little girl". I never really learned how to argue or express anger until I was grown, as it was not "ladylike".

Of course my mouth jerks and twitches came back when I was at my most upset points in all this, but they would be gone the next day. And even at that they weren't as bad as they were before the Primidone. So I would say I have put it through a grueling test of its powers this week, and it passed the test quite well.

Now the boxes are set up, the TV and VCR work correctly with them as far as I can tell, and the Universal Remote is programmed for all the pieces. I am able to breathe again. But I did tell hubby to be sure he brought me some CHOCOLATE!!!

Mouth Spasms Still a Problem Sometimes

I have had a couple of days since the great improvement that have not been as pleasant as most have been, and yesterday was one of them. It starts out innocently enough, with a little mouth movement in the mornings. But as the day progresses the twitches get harder and harder.

I have tried relaxation techniques, getting busy and trying to ignore it, and chewing gum, but once the twitch starts I don't seem to be able to get it stopped. By the end of the day my whole face aches from the constant muscle spasms. The same thing happened late July 4th Holiday and all day Saturday, which I attributed to just being tired from all the family celebration and noise. But yesterday has no explanation.

When I tried to go to sleep I became aware of small muscle tensions and aches here and there all over my body, and I had one of the worst foot cramp episodes I have had in some time. Not only the toes, but also the arch went into full spasm, and it took pushing with a lot of pressure to get it stopped. I had to get back up and stand on my tiptoes as best I could to get rid of it.

Luckily I am sleeping well now, so once I was asleep it went away. Our bodies are naturally paralyzed in our sleep, so it gives some relief from the spasms. My mouth is behaving itself this morning, thank goodness. I can only hope that it continues to stay calm.

I am beginning to use an exercise/relaxation tape every other day now. I do pretty well with the upright exercises, but I am just pitiful on the floor. It's all I can do to get down there and back up, let alone do the stretches. But I try. Then when I do get back up it takes me a good bit of moving around to stop the cramps in the tendons at the upper thigh. My whole body is clamped down tighter than a drum, and it's going to take some doing to get any flexibility back. One day at a time, being a little more active each day and increasing my range of motion slowly, is the only way I know how to do it.

Even though the mouth problem and the foot cramps are very painful and aggravating, I am still so much better than I was that there is no comparison. I continue to be so thankful for my vast improvement and remain optimistic.

GREAT NEWS!!! - My New Diagnosis Is ESSENTIAL MYOCLONUS!!

I finally got to talk to a nurse on Dr. Watt's staff today, and I now have an official diagnosis that I can take to insurance companies. I do not have Parkinson's, nor anything in the Parkinson's Family. I have what is called Essential Myoclonus. It is not a progressive disease, which is the best news of all.

They do not know what causes it, but the Primidone is doing a remarkable job of controlling my movements. So I look forward to continued improvement and taking my life back! I asked if it would be OK to add an extra half tablet in the mornings, because the dose wears off in the afternoons, particularly if I am more physically active or stressed. She gave me the usual precautions about not using it if I became overly drowsy, be careful about driving, etc., but they are leaving the timing and use of the half tablet up to me. I am to start it in the mornings and then move closer to lunch if I want to try it there after a week or so.

I have been telling everyone about how wonderful I have been feeling since I went on the Primidone and how truly blessed by God I feel. I have strong emotional ties to lots of online Parkie friends, and I would only wish that they could have such good news from their doctors very soon. I guess I'm going to have to add another section for research about Myoclonus to my sidebar now, and come up with a better name for this blog. I have been very active in the Parkinson's PatientLikeMe forum, but I imagine I will be spending more time in the Essential Myoclonus section of WeMove.com now.

I lived in their world for almost three years, so I have a perspective into what it is like to have Parkinson's that most people can never have, unless they actually have the disease or are very close to someone with it. That is a valuable perspective that I do not want to squander. I'm not sure how God can use me in regards to this, but I'm sure in His good time it will become apparent.

I have tried to chronicle my journey from the very first days of the initial diagnosis of Parkinson's, through all the struggles I had with my digestive system fighting against the PD meds, to modifying my lifestyle to keep me safe, to the onset of tremors that soon turned into horrible shaking. I've tried to present an accurate picture of what was happening to me emotionally, as well as physically.

I am proud of this blog and hope that it will continue to be helpful to those who read it. May God use me and this blog to good purpose.