Calling All Mother Hens

[tex]

Polly,

As usual, you're right on target - few people have ever understood the irony of daily life, as well as Rosann Rosanna-danna.

How am I feeling? Surprisingly well. I suppose I should be feeling all down in the mouth about this unexpected development, but hey - actually, in a strange sort of way, it makes me feel vindicated. As I'm sure you recall, I've always been a proponent of the chaos theory, and if this doesn't lend credence to that position, I don't know what does. LOL. Also, I'm feeling a lot better today, than I was feeling just a few days ago, so I can't see any reason to feel sick. Life is an adventure, and it's always interesting to see what fate has in store for us, "around the next corner".

I may be whistling a different tune, if/when the symptoms begin to present, but I'll worry about that if/when it happens, not before. The chaos theory is always out there, just waiting for an opportunity to stand us on our ear, and it could easily "stand me on my ear" again.

Much love,
Tex

[tex]

Ant,

You make it sound as though I were sick or something. It's easy to feel calm when there's no reason to feel otherwise - I feel fine, and I intend to do what I can, to stay that way.

I have a hunch that the main reason why I feel so calm about this development, is the fact that it seems like a cakewalk, compared with what I went through 6 to 9 years ago. I was as sick as a dog, (sicker, really), my doctors couldn't find anything wrong with me, I no longer had a life worth living, and I had no hope of ever improving the situation. But look at how well that resolved.

By comparison, this time, I don't even feel sick, the doc figured out what was wrong with me, in just a matter of minutes, and treatment is readily available. Why should I get all uptight about that.

IMO, any of us, who has had to deal with this disease, and who has had to fight "tooth and nail", to acquire remission, has experienced a much tougher situation than I am in now. It's the unknowns, in a disease such as MC, that are the scariest part of it, and the hardest aspect to deal with. There's a lot more valid information available about PD, than there is about MC. The scariest part about MC, IMO, is discovering that a lot of the information available about it, is false, and that information is coming from previously trusted sources. It's impossible to stay calm, when you don't know who you can trust.

Thanks for your good wishes.

Tex

[Polly]

Mornin', Tex!

I do know that you are a believer in the chaos theory. I think we humans waste a lot of time trying to control life. Life happens, and although we can make some individual choices, we can't escape disease, death, natural disasters, taxes (LOL), etc. It is what it is. One of my favorite sayings is : "Yes, life IS painful, but we don't have to suffer". It sounds as if you feel this way too. I like your attitude. And I do believe there is a relationship between attitude and the course of any disease.

Your other point is well-taken. There is a world of difference between MC and PD. PD is well-understood and researched. They have even been trying stem-cell treatment for years now and are getting closer to perfecting it. Gene therapy is also being used. There is every reason to be optimistic about a cure with PD.

Meanwhile, I'd like you to know that my maternal grandmother (who had AI diseases - rheumatoid arthritis and hypothyroidism) was diagnosed with PD in her 60s. There was some thinking at the time that it may have been related to her having the flu in 1918. The progression was extremely slow. So slow, in fact that she lived to be 5 months shy of her 103rd birthday and died from unrelated causes!

Love,

Polly

[JLH]

Tex, I'm so glad that you went to the neurologist instead having the more typical guy stubbornness about doctors. (It took me years of nagging to get DH to go to the doctor about sleep apnea. Oh, yes, he has it.)

You have a great attitude and I know that will benefit you immensely. As my co-worker used to tell me, "Don't borrow trouble."

I know all your amazing research skills will be put to good use.



Love,

[MaggieRedwings]

Morning Tex,

Well that is a real shocker but if anyone can handle this I know it is you. I can't really add much to what everyone else has said but do want you to know that you are always in my heart and prayers. I also know that you are a "tough" man and something like this will not deter you from what you enjoy in life and I am sure by the end of today you will probably know more about PD than any doctor out there.

Love, Maggie

[Gloria]

What a terrific attitude, Tex!

Gloria

[hazel]

[tex]

Polly,

Yes, I do feel that way. I also like the saying attributed to Abraham Lincoln, that Dan, (Delta), uses in his signature line:

Most people are about as happy as they make up their minds to be.
- Abraham Lincoln

I think there's a lot of truth in that statement.

I really appreciate the insight into your grandmother's experience with PD. That's an eye-opening lesson.


Joan,

To be honest, I never would have gone, (unless I had another "event", of course), if it hadn't been for all you "mother hens" pecking at my tail feathers, to get me going.


Maggie,

Thanks for your support. I'm not so sure that I'll ever know more about PD than any doctor, (that's a pretty tall order), but yes, I'm working on it.


Gloria,

Thanks. So far so good.


Kathy,

Thanks, I appreciate your support.


Everyone,

There's a silver lining to every cloud - at the very least, this seems to have taken everyone's mind off the TIA.

Love,
Tex

[Rosie]

Tex, you are a real inspiration, and a great example of how helpful the "it could be worse" philosophy of life is!

[kscolorado]

The foot thing is peripheral neuropathy, and considering the extent of the severity of my symptoms, before I cut gluten out of my diet, (and the length of time that I was untreated), I wouldn't be at all surprised if gluten damage to my brain had a lot to do with this issue, but that's just a WAEG on my part. For all I know, I may have been an asymptomatic celiac, for all of my life, up to that point.

Tex, I don't have anything to add but I do agree with what you stated above. Gluten affects so much more than just the GI symptoms you typically hear about. Sounds like you have a very in tuned doctor as well! As others have said, you are an inspiration to us all!

[Lucy]

Hi Wayne,

I'm sorry to hear about the possible PD diagnosis, but glad to hear the neuro ruled out the TIA.

I, too, used to think of PD as just "that disease where you shake." That's what I hear all the time. Might be wrong about this, but if I remember correctly, think I've heard that only about 40 percent of those diagnosed with PD actually shake.

There is, however, a fine tremor that tends to occur on one side only, and some people will notice a slight tendency to drool out the corner of their mouth. Another common thing that's noticeable is that the arms will tend to not swing all the way back when one walks, and posture tends of be a little stooped. I'm just throwing out a few things off the cuff that you may have noticed, yet not given too much thought to their being related to your recent hospital episode.

The Parkinson's Disease Foundation, I believe it is, publishes a whole series of very well done booklets and other publications that they will send you free of charge if you request them, and I don't believe that that requires even a membership. They sent me big, big boxes of many of these for a class I taught to lay people a few years ago. Sometimes it's just practical stuff in these pamphlets, but with this condition, practical can mean alot. There are also explanations of technical and scientific things made easier to understand. That makes them nice to share with family and friends who want to know, but it doesn't skimp on details.

When you become a member of that organization, they send you a beautifully done magazine that will keep you abreast of the latest research and developments in the PD community. I've not been a member in a few years now, but used to be.

You might want to become involved in the closest PD support group to your area, if indeed, PD is your diagnosis. The one here provides all shorts of therapy classes including Tai Chi which actually seems to help for some strange reason -- slow movement. PD is classified as a Movement Disorder.

If you want information about the newer medications coming out, I probably wouldn't be the one to ask as my mother has a strange form of PD that makes her very sensitive to medications, but then, she's almost 90 years old! I took care of her older brother as well, and he was fine with medication, but that was a long time ago. Research keeps coming out with new things all the time, so be encouraged by that.

Back in February of '99, I joined the much older forum of Harvard's Neuro Board for PWP's (people with PD). That was my first opportunity to get online.
Mom had actually had the condition then for many years. I meet one person on that site who has been my good friend for over ten years now, and a great support. I'm sure if the new board at Harvard still has the PD section, that it will be much nicer and informative by now. You might want to have a look at that to get you started. Perhaps Cara would know if there's still a PD section on their board.

As far as I know, the nearest Center of Excellence to you would be the one in Houston -- Baylor Medical College's Parkinson's and Movement Disorders Clinic.
Their offices are located in Smith Tower right across the street from the western entrance to Methodist Hospital in the Texas Medical Center. Until our family neuro moved into a teaching position, we actually saw both the Baylor doctor of suggestions overlapping our family neuro for a while. Now, we just use Baylor's doc.

Wayne, should you ever decide to visit the TMC, be sure to find the place you are going before your appointment. This is the largest medical center in the world and it's more like a middle size town.

You may run across the name of Dr. Jankowitz (sp) who heads up that clinic. We choose to see the next guy in line, Dr. Wm. Ondo as Dr. J travels all over the world speaking, so we thought Dr. O would be a good choice, and that we could get in sooner for each appointment due to his being in town more.
He's also a really nice guy. When you are first "admitted" to the clinic, you will have a pretty thorough work-up by a resident or a fellow (not sure which). Not to worry, Dr. Ondo thorough supervises those people, and will probably go over alot of pertinent information with you again. After that first visit, unless they get behind, the visits are a little less lengthy.

Just thought I'd throw out whatever came to mind, as knowing you, I'm sure you'll be looking for all sorts of ways to update your knowledge on this diagnosis, even before it's confirmed!

Take care.
Yours, Luce

[tex]

Rosie and Kathy,

The fact is, it definitely could be worse - much worse. I could still have uncontrollable D, all those miserable aches and pains, bloating, nausea, arthritis, brain fog, etc., plus anything that PD might eventually add on top of that. At least I'm starting out on this adventure free of all that misery, and for that, I'm very thankful.

It will be interesting to see what the MRI scans show. Maybe gluten has left some "tracks" there, that the neuro doc might be able to identify.

Thanks for the kind words.

Tex

[tex]

Luce,

Yep, that was the first thing that I did, when I got home from the appointment on Tuesday - I checked out my walking habits, and noted that my hands don't swing all the way back, and in fact, my left hand has a very limited range. The right arm swing only appears to be limited on the backside. My posture is still fairly decent, though, (probably as good as it ever was, FWIW). So far, the only drooling I do is when I'm chomping on a big cigar, but then, I've always done that.

I can remember noticing a slight tremor at times in one hand, a couple of years ago, but I don't offhand recall which one it was, at the moment - my left, I believe, but I'm not sure about that. At the time, I wondered what that was all about, but I just wrote it off to "nerves", and I haven't noticed it in a year or so, now. Obviously, though, I've had this for a few years, so it's probably mighty lucky that I smoke cigars, and drink caffeine, (contrary to my doctors' advice), or I might be in much worse condition, (dopamine-wise), by now. I've had the balance issues for several years, for sure, and though they wax and wane, they're always present. I suppose I might as well start taking the Azilect. I'm not sure if that will have any bearing on the MRI scans, or not. I was hoping that you, or someone else, might have had some experience with it, but apparently that's not going to be the case.

I've been feeling much better, since taking a magnesium supplement, but sometimes I'm still a little tired first thing in the morning, so I have a hunch that the PD may be interfering with my stage 4 "deep" sleep, sometimes. Since taking the magnesium, though, it seems to be much easier for me to fall asleep, and I no longer have any problems trying to take a deep breath. That was a vexing issue, and it sometimes kept me awake at night, but it seems to be gone, now.

Thanks for all the info.

Wayne

[JoAnn]

Hi Tex, I just want to send my love and support to you along with all the others. You're an amazing man and an inspiration to us all. I have no doubt you'll be on top of all this PD stuff in no time. I've mentioned to you that I have had muscle twitches, restless leg, muscle cramps, etc. since having mc. I went through all the neurological tests you've mentioned and others including an MRI. So far, I've been cleared of anything serious, but I sure wonder what the gluten sensitivity has done to me. You're in my thoughts and prayers and you continue to be one of my heroes. Love JoAnn

[tex]

JoAnn,

Thank you for your kind words, and the insight into your neurological issues, which probably were caused by gluten. The fact that your tests didn't show any evidence of anything serious going on, is probably a very good indication that nothing will show up in the future, and once your body completes the healing process, all will be back to normal.

I sincerely hope that no one here, will end up with any permanent damage due to gluten. It's a worrisome issue, and one that needs a lot more research. Hopefully, when mainstream medicine finally accepts the fact that non-celiac gluten sensitivity is indeed a widespread problem, this topic will get the attention it deserves.

I truly appreciate your support.

Love,
Tex