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.

Standing MRI Tomorrow / Praying for Friends

Hubby went off yesterday morning to his stint on Jury Duty, only to be sent back home. All the cases for this week had been handled through plea bargains, and there were no cases!! He had to call back last night to see if anything had changed, and they dismissed all the jurors!!

So, I got busy making arrangements to have my MRI done, and it is scheduled for tomorrow. I'm going to call my Neurologist's office today and see if they have any suggestions, because it dawned on me that with this standing MRI, I would need to be still for quite awhile. That was not a problem with the knee MRI I had done at this same place. I was not having foot and leg tremors then, but I am now.

It just seems like this PD manages to worm its way into every single thing I try to do.

I shouldn't be whining, though, as I am so much better off than some of my Parkie friends are. It grieves me, for their sakes, to read of all the pain and problems that PD is causing some wonderful people that I care deeply about on the PLM forum and on the PD blogs I keep up with. I keep them in the forefront of my prayers daily.

Hubby and I are also extremely concerned about a young teen aged, very gifted and sweet boy from our church, who is seriously ill. He went to the doctor Friday, but the doctor ran all kinds of tests and could not find anything to explain how sick he felt, and sent him back home.

Saturday he was in the hospital with pneumonia. Monday, he was put in ICU, and yesterday he was airlifted to the ICU at Children's Hospital in Birmingham.

This single mom has a Downs Syndrome child, as well, so attending to the needs of both of them must be putting all kinds of extra strain on her during this scary time. Thankfully, she has family living nearby who can help her out. We spent a few minutes with him in the ICU yesterday, only to come home and find out about the airlift. I talked to her for just a moment or two in the ICU waiting room at Children's last night, and she sounded OK, but I imagine she is faking a lot of that calm.

So, I feel very small and insignificant at times like this, with my petty little problems. All we can do is keep them in our prayers, and offer to help in any way we can.

Neck Pain and Tremors Causing Problems

I'm having two main problems from the Parkinson's right now - my very stiff and painful neck, and the much increased tremors, particularly in my right foot.

I'm sleeping with a very soft neck pillow, the kind that look like a C, and I keep it behind my neck while I sit at the computer, too. That helps me get to sleep and cuts down on the pain of just holding my head up. As the day goes on, the pain is getting worse and worse.

I am waiting to hear from my Orthopedist now about a standing MRI appointment. Hubby has Jury Duty next week, so that means I will have to wait longer to get it done. Can't be helped, but it's frustrating. He had to ask for a deferral back when we were taking care of Daddy, so he can't very well ask for another one because he is taking care of me. There is absolutely no way I could drive myself to the big city, as long as it's been since I've driven at all, even though I am no longer having the sudden sleep attacks. Maybe, if he is lucky, he won't have to serve for long, and I can get it done toward the end of this week. I sure hope so. The Methacarbamol and Mobic aren't helping enough to warrant taking the pills, so I quit taking them.

I've tried to continue with as much exercise as possible, but DH hurt his back again several weeks ago, and his sciatic nerve is acting up. He hasn't felt like going to the track, so I haven't been getting enough exercise lately. I am still working out in the yard the best I can, but it makes my neck hurt worse.

I'm also having considerably more problems due to tremors. For the first year of PD I didn't have any tremors at all. I was beginning to have small ones on Sundays mostly, while we were listening to the sermon. I finally decided that it was the uncomfortable pews, being too still too long, and being cold, all working together to stress my muscles. But that was a very mild nuisance tremor.

Since I had the steroid interaction that sent me to the ER, however, the tremor in my right leg and foot have been so strong that it makes walking and standing much more difficult. It still comes and goes, but when I get the least bit tired, as I do when I walk very much, that leg starts dancing a jig all on its own. I am having more problems with balance because of it, and I am beginning to experience what is called freezing. When I stand up, I have to kind of wait before I can get that pesky right foot to make up its mind to move where I want it to, it's so busy moving where it wants to.

One thing's for sure, I look like I have Parkinson's now, where I didn't until recently. Even my lips, tongue, and eyebrows are beginning to quiver. We had our portraits made the other day to give to our children for Christmas, and it was all I could do to hold the poses long enough to get a good picture. My face behaved, but not my leg. It took every bit of will power I had to make my leg be still. If I hold my breath and really concentrate, I can stop the tremors momentarily, thank goodness. I had to do that to get the X-rays on my neck done a couple of weeks ago, too.

So, things have been a little difficult lately, but I am still managing OK. I've been listing a lot on eBay, and we have had some good sales there. I've also been concentrating on trying to help as many people as I can on my Plush Memories blog. I've managed to find several lost lovies for people, and some of my blog readers there have found a few more. And, there have been a few times that we had the lovey they were looking for in stock, so I've made a few sales, and made some folks very happy all at the same time. That's what makes selling the plush toys so much fun.

We are still going to Estate Sales, but this time of year there usually aren't as many on a given Friday. That's OK, because I really can't manage more than a few anyway, as I tire out and hurt too much to go to very many. So, we have been doing a little bit of Estate Sale hunting and a little bit of Christmas shopping on Fridays. The only thing we absolutely have to go to stores for is all the Stocking Stuffer odds and ends that we give our children and grandchildren every year. And this year, we have been buying things for their stockings all year long, which is a blessing.

Thank goodness for Internet shopping! I've been buying most of our gifts online for years, but this year it has been a blessing. The black pair of Skechers came the other day, and I wore them to get our portraits made. They feel wonderful, and they do improve may stability much more than the Sunday shoes I have been wearing. Our daughters wear the same size shoes I do, so looks like they will be getting some hand me down shoes.

So, I keep going, making changes as I must.

Hopeful News on Stem Cell Research with NO ETHICAL COMPLICATIONS!!

Great news from the New York Times today!

Science
Scientists Bypass Need for Embryo to Get Stem Cells
By GINA KOLATA
Published: November 21, 2007
Turning human skin cells into what appear to be embryonic stem cells without having to make or destroy an embryo could quell an ethical debate.

I am one of those who has ethical and religious objections to using human embryos for stem cell research. When you consider that I am also one of those people who will benefit so greatly by this kind of research, an article such as this one in the New York Times today gets me very excited.

And now today, another article from the New York Times:

Science
Man Who Helped Start Stem Cell War May End It
By GINA KOLATA
Published: November 22, 2007
James A. Thomson’s laboratory reported a way to turn human cells into what appear to be embryonic stem cells.

Waiting, But Not So Patiently

My Gastroenterologist is a very busy, very dedicated man, for whom I have the utmost respect. I know for a fact that he works long hours, because one of the times I went to his office lately, they couldn't find my chart. Then the nurse pulled it out of a big duffel bag full of files, and told me those were the ones Dr. B had taken home that night to work on. He had been reviewing my whole chart, hoping to find a pattern in my symptoms that would help him decide on a course of action. I had no idea that doctors took their work home with them. Considering they get calls in the night for emergencies, I always assumed that they tried to leave their work behind as much as possible when they went home.

So, I'm trying to be patient as I wait for him to call me back. I reported in to his nurse last week to let her know that the cleaning out he had me do with the GoLytely did not stop my problems with elimination or with the bloating and gas. She told me then to check back this week, after I had stopped the Amitiza, to see if that would help. Well, I called her Tuesday, and left a message that stopping the Amitiza did not change the problems. I didn't hear from her, so I called again late Wednesday afternoon, as she is usually so good about returning calls. She said then that Dr. B was going to call me back that afternoon, himself. So, I stayed close to home, with the phone on ready. No phone call. Well, like I said, I know he's a very busy man, so I waited until late Friday to call his nurse again, thinking maybe there had been a mixup on who was supposed to talk to me. She called me back just a few minutes later to say that Dr. B had just plain forgotten, and was very apologetic, and would definitely call me that evening. Still no phone call. I can't imagine him calling me on the weekend, but who knows.

I know I need to work on patience, as it is a virtue I really need more of. The old joke is that you should be careful when you pray for more patience, as the way to get patience is to deal with adversity. I guess my "adversity" right now is having to deal with these digestive related problems for over a year now, trying one thing after another, as the doctor ordered, with no relief yet. I'm definitely showing signs of depression, and I blame much of it on this unresolved problem.

There's no doubt in my mind that I am under medicated right now, as far as the Parkinson's meds are concerned. But there's no point in going back to the Neuro until I have overcome my difficulties with getting used to the CPAP, and until something definite has been accomplished with this digestive situation. As it is, I'm changing two things at once, which is not good science. In order to be sure what the cause and effect is on any treatment change, there needs to be only one variable at a time.

I wrote some time ago about how dealing with Parkinson's is like being in a clinical trial with one participant. I still think that is an accurate assessment of what it's like. After reading lots of comments and stories from other PWP, it is apparently true for most, if not all, Parkies. The doctors can only try things, never knowing exactly how any one patient is going to react to the meds, or their side effects.

And the depressing thing is, none of these meds work to improve the underlying brain deterioration. They only work on the symptoms. So far, no medicine has been proved to actually slow down or halt the progression of the PD itself, and there's not even a whisper yet of anything that can repair the damage already done, with the exception of claims made for stem cell therapy.

I do have one positive piece of information to report, though, and I try hard to end on a positive note. I mope about all this enough. Since brain fog is a problem I've had for a long time now, I was very curious when someone on the PatientsLikeMe site mentioned the idea of using brain training to improve their mental abilities. That started me doing some research, and led me to the MyBrainTrainer site. It was not very expensive to join for three months, and I figured I could give it a try for that long, and then decide if it were worth taking a year's subscription. They have a series of online brain exercises, set up like miniature games, that you work through on a planned schedule. I'm on Day 12 of the 21 day basic training part right now. My scores are consistently falling in the 25 to 29th percentile of all their participants in my age range. Not anything to brag about, that's for sure. BUT, here's the good part. The brain fog is beginning to lift, just a little. I'm not groping blankly for answers to questions on the Smarter that a Fifth Grader show nearly as often. I find I know the answers more often on Jeopardy, too, and I don't feel nearly as frustrated by watching these shows as I was a few months ago.

So is the BrainTrainer the reason, or the CPAP machine? I have no idea. Again, changing more than one thing at a time makes such a conclusion impossible. But I don't care, all I know is that I'm thinking better, even as my body is slowing down again from not having a strong enough PD med dosage in my system. I'm very grateful for that, and I cling to any positive outcomes as I try to work through this depressed stage I'm in.

Gee - I'm Now a "Hero in Parkinson's Disease"

One of the blogs I have found useful to read from time to time is My Parkinson's Info. It is an informational site, but they also ask PWP to answer interview questions. Matt was kind enough to ask me to tell about what it was like being a caregiver with Parkinson's Disease.

So I now have an Interview on My Parkinson's Info!

Amniotic Fluid - Source of Stem Cells?!?

The breaking news that scientists have been able to isolate stem cells in amniotic fluid and placental tissue is quite exciting! Not only have they recovered these cells, but they have already been successful in the lab in growing them into various tissues. The research will have to continue for some years, more than likely, so it's not as though PWP (people with Parkinson's) are going to be able to order up a cure any time soon.

This whole stem cell research area has been an issue I have always had very mixed feelings about. I've never been able to feel comfortable with the embryonic stem cell approach that many have endorsed, because in my estimation of it, this type of research would eventually lead to intentional creation of human embryos just for this purpose. I consider that immoral.

Amniotic fluid and placental tissue, on the other hand, have no such possible misuse concerns that I can imagine. I also understand from what I have read that the embryonic stem cells tend to cause tumors when implanted, whereas the amniotic and placental tissue cells so far have not been found to have that flaw.

Right now scientists are working with only 21 embryonic stem cell groups. With amniotic fluid as the source, scientists would have hundreds or even thousands of genetic strains of stem cells that could be matched, according to today's news, with 99% of the population of the US.

Just think of the implications for those with spinal cord injuries, Parkinson's Disease, Alzheimer's Disease, and many other neurological disorders!!

Yes, I have Parkinson's Disease, but it looks like I may be one of the fortunate ones who will live to see the day that doctors can cure this terrible disease, instead of just trying to alleviate symptoms. Thanks be to God for this unspeakable gift!!