On Days - Off Days

I am definitely less depressed since gradually cutting the dose and frequency of the Clonazepam, but it has not been very predictable. Thursday I went until sometime after 5:00PM without any facial tics at all, and then spent the whole evening jerking like crazy. when I'm like that, my face contorts, my left shoulder jerks forward, and my foot dances a jig uncontrollably. I was on a half pill only at night then. Friday I jerked and twitched all day long, also on the half pill dose. I also had a huge startle reflex while we were out on our Date Day, something I haven't done to that extent in some time. Now today, Saturday, my mouth is all quiet and well behaved so far. I did not take even the half pill of the Clonazepam last night.

I had called twice to UAB, trying to get them to go on and send in the prescription for an alternative to the Clonazepam, because our drugstore would be closed from Friday evening until Tuesday. They did not get it called in, nor did I get a callback from a member of Dr. Watt's team. The receptionist did tell me on my second call that Dr. D was sick. He is the member of the team who apparently is the one I will be seeing the most. So, I have to assume that is why nothing was taken care of.

I have found that I can at least mask what my mouth is doing in public by chewing sugar free gum. I've always been a gum smacker, so I am trying to get out of that habit, and reach a point were I can slowly chew and control the horrible twisting, twitching, and jerks my mouth does so much.

The right foot continues to do its own little dance, which makes me feel unstable as I stand still or walk. Going up and down steps is harder when there is no way of knowing what my foot is going to do at the moment. So I am still using the cane everywhere except here in the house and at church. The few steps I have to deal with at church are entrances, and hubby is there with me going in and out, so I can skip the cane and feel a little more inconspicuous.

I should have taken the last dose of the Clonazepam last night, but I thought it would be wiser to see how I would be today, rather than being even more unpredictable than usual for church tomorrow morning. Since I've been OK today, it looks like the decreasing dosing was done slowly enough to not leave any withdrawal symptoms. But there is now way of knowing how I will be in the next minute, let alone tomorrow for church.

I continue to stay busy searching and posting on our Lost Toy blog, and have been able to help quite a few families, thanks to all the folks who read the requests for help and search for them, too. If you have never been to that blog, you ought to go read some of the stories and try to help them. It's a very satisfying feeling to help them. And I continue to add to our online Plush Toy catalog, too, so I stay very busy.

Oh, and I mustn't forget to mention that it looks like our Centipede grass is actually beginning to come up in the composted side yard. I worked for a little while this morning in between the shrubs and the driveway, digging that section up and trying to get as many of the weeds out of that section as I can. We can plant Centipede here until July, so I should have it ready long before then.

Take each moment as it comes, Rosemary - a lesson I am being taught daily.

Weaning Off Clonazepam = Thinking More Positively

I'm down to a half tablet at night now, starting today. I will stay on that for three days, and then I will be through with it. I sense the depression passing somewhat, but certainly not all of it. I was depressed before they put me on it, just not as much.

I've been trying to work off as much of my tension and fears in the yard the last few days. I've spread the rich composted "dirt" and planted Centipede seed there. I don't know if any of it will grow, but the weeds are sure enjoying the rich dirt. I can't very well pull the weeds, as the grass is still germinating. The idea is to let the growing grass choke out the weeds on its own. Since that section of the yard is pretty much finished, I've moved to a small section of grass at the front of the house. I'm wetting it down at night and then working on digging all the grass weeds out of it the next day. The hoeing is very therapeutic. It's kind of like a punching bag for me.

My biggest problem right now is that I can't get out in the yard without setting off a poison ivy outbreak, no matter how hard I try to stay away from it and bathe as soon as I come in. I've been super itchy now for some time, because I don't want to take any antihistamines on top of the Clonazepam.

I've been trying to read about Tardive Dyskinesia, which certainly seems to fit what I look like these days. I can't even spell it right half the time, but Google very nicely suggests how to spell it for me. If that's it, then I can add TD to my list of acronyms.

My mouth is definitely jerking and twisting more as the Clonazepam dosage is reduced in my system, but they have told me that there are other prescriptions they will try to reduce the tics and jerks, once I'm off this med. And I've started chewing sugarless gum a lot, too, as that keeps my mouth busy. I chewed so long last night I made my jaw hurt, but at least I didn't have my mouth pulling to the side and twisting all around. I will definitely be using this trick in public, as I am extremely self conscious about the way my face looks now.

Our wonderful pharmacist has printed out all the prescriptions I have been on since he opened his store some years ago. I haven't yet tried to track down where my records would be stored from the previous drugstore, but he suggested I try the CVS in a nearby town. We went without a drugstore at all for quite awhile there, as the previous pharmacist gave up his store to work for CVS. I haven't called yet, because it is likely a waste of time. But I will call. I'll just have to be in the mood to do it.

I've tried researching every medicine that I can remember ever being on, and a few are possible causes. But there's nothing to be done, other than try to deal with the symptoms. Tardive means it's a delayed reaction, so there is no med to "stop taking" to make the movements go away. Our family has always joked that an aspirin will put me to sleep, so I suppose it's not surprising that I would be one who had a delayed side effect to some medicine I've taken in the past.

I haven't been going to the Parkinson's forum. I just don't know what to say there any more. I guess I would still qualify for membership, since I'm dealing with a Movement Disorder of some kind, but I just don't feel like I fit right now.

Hubby has been a big help, and isn't mad at me any more about my reaction to the doctor's news. He's such a sweetie, and I know all this has been really hard on his emotions, too. I don't know what I would do without him.

I ran across a copy of Michael J. Fox's book, Lucky Man, at a yard sale not long ago, and I finished reading it last night. There were several things in it that made me feel better about myself. He talked about all the things he did to make his early tremors stop - how he tricked his brain - so he could hide it from the television and movie audience. That process of being able to temporarily stop a tremor with little mind and body tricks is one reason I thought I was suffering from a psychosomatic illness. I did not realize that at least some people with PD can consciously stop tremors momentarily. I have feared from the very beginning that being able to stop them for a brief while meant mine were not "real."

So, as it stands now, I don't have Peripheral Neuropathy, and there's no way of knowing if I ever did or not. I'm inclined to think I did, but all the super nutritious foods we have been eating for the last two years, plus the Turmeric and all the vitamins and minerals I take, just healed the nerve pathways.

Parkinson's is likely not the problem, although I have not ruled it out completely, as the doctor's always hedge what they say about that. I do have a Movement Disorder of some kind, and I am getting past the point of blaming it on myself. That's a good thing!!

Reading Fox's book helped me, so I hope that reading this blog can help someone, too.

Back to Square One Plus

OK, first of all the plus side of the meeting we had with Dr. Watt's team this week. My fancy MRI and EEG did not show anything particularly abnormal, and certainly nothing that I need to be worried about. The ultra strong MRI did show signs of several Transient Ischemic Attacks, or TIA, what many people call little strokes. The doctor said they were normal "for my age." (I hate to think I've reached the age where something wrong is normal, but I guess I have, huh.)

My reaction again is not what anyone would have expected. I guess I should have been jumping up and down with joy that I did not have a brain tumor, but all I could do was cry. The whole time he's telling me that they didn't find anything that explained my symptoms, I was jerking and wreathing all over the place. I asked him point blank if this could be that I'm just crazy, but he assured me that there really is something physical going on, they just don't know yet what it is. If I understood him correctly, he says in time my symptoms will become more obvious, so they can make the diagnosis.

The Clonazepam had already made me very depressed, so I have been way low since Thursday. They are weaning me off the Clonazepam, since it did not help, and it was making me feel so depressed. I think they plan on calling in a prescription and trying something else, once I have finished weaning off the Clonazepam.

Hubby was really angry with me Thursday night. We finally talked about it yesterday, although I still begin to cry when I do discuss it or even think about it. He was so mad, because he said I acted like I was disappointed that I DID NOT have a brain tumor or some horrible disease. I really can't explain it, but to have my body jerking and wreathing and nobody being able to tell me why is extremely upsetting. I know I should just put my faith in God, that this will either improve with time, get worse and provide enough information to make a diagnosis, or stay just the way it is now. If this is the way I will be for the rest of my life, then I am going to have to deal with it somehow. But for now, all I want to do is cry.

The only diagnosis they will even name as a possibility is Tardive Dyskinesia, which just means they think this was caused by some medicine I have taken some time in the past. Trouble is, whatever it was is obviously not in my system now.

They have told me for sure that I do not have Peripheral Neuropathy. I asked him if that meant the original diagnosis was wrong, or if it had been cured. He said it was possible that it was cured, but seemed to be leaning more toward the idea that the original diagnosis was incorrect. I did not get the nerve up to ask him if Parkinson's was ruled out. That seemed kind of pointless right now, since Parkinson's is so hard to diagnose anyway.

So, I'm left feeling miserable, with no coping strategies working for me at all. I'm crying even as I write this. I cried in church today. I cried in the car yesterday. That's basically all I'm doing - just crying. It's a grief that I can't name, but it's there.