Hi Buddies!
Just wanted to let you know that Tex is fine - he is just very busy this AM and hasn't had a chance to post. He will be on shortly to update us on his neuro visit.
Hope he doesn't mind that I posted this.....but I don't believe he realizes how much he is loved and how worried we all have been. I know everyone is anxious to hear from him.
Love,
Polly
Calling All Mother Hens
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Calling All Mother Hens
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Okay, now I hate to post this, because I really don't have any good news. 
Well, I guess I've got good news and bad news. The good news is that the neurologist said that I didn't have a TIA, (the symptoms of a TIA are usually gone after a few hours). The bad news is that he noticed other problems, right off the bat.
I've got an echocardiogram scheduled at 1 pm, and an MRI, (I assume of the brain), scheduled at 2 pm on August 11th. I'll see him again on August 18th, at 1:45 pm.
He noticed immediately that there were clues in the way that I walk, and balance issues, that clearly suggest early stages of Parkinson's disease. When he did some simple reflex tests on my feet and legs, I was surprised to see that my feet and lower legs are virtually dead.
. IOW, my sensations of touch, cold, etc., are way below par, below my ankles, and gradually improve to pretty much normal, above my knees. He seemed surprised that I hadn't noticed any problems walking, but maybe that's because I've been taking treatments for most of my life - tobacco is protective of Parkinson's and Alzheimer's, and so is caffeine, apparently. (Believe it or not). Parkinson's disease causes the loss of dopamine from the brain, which interferes with the ability of the brain to communicate with the limbs. Caffeine and nicotine, (and possibly other chemical agents in tobacco), help to protect against neuronal damage, by inhibiting the enzymatic oxidation of dopamine).
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.
Don't worry, Parkinson's typically progresses very slowly, so I'm not really upset about it, at this point. It's possible that the date of my initial development of the disease may have been pushed way forward, by exposure to certain pesticides used in agriculture, decades ago, (they were pulled from the market, decades ago). I used those pesticides on a very limited basis, and I used all the recommended safety precautions, (at the time), but as we all know, sometimes "stuff" happens, anyway, despite our precautions. Since there's no known history of Parkinson's in my family, chances are, the disease would have presented much later in my life, such as the 80s, or 90s, if it hadn't been "accelerated", but that's pure specualation, of course. By catching it early, hopefully I'll be able to slow down the progression, (with my bad habits , and certain medications). He gave me some Azilect to try. Anyone know anything about it? It appears to do the same thing that nicotine and/or caffeine do, (except that the side effects are worse - possible life-threatening BP spikes, if you eat foods that contain significant amounts of tyramine). I wonder how the effectiveness compares.
The bottom line is, we won't really know anything definitely, until the test results are analyzed, so nothing is carved in stone, at this point.
Love,
Tex
Well, I guess I've got good news and bad news. The good news is that the neurologist said that I didn't have a TIA, (the symptoms of a TIA are usually gone after a few hours). The bad news is that he noticed other problems, right off the bat.I've got an echocardiogram scheduled at 1 pm, and an MRI, (I assume of the brain), scheduled at 2 pm on August 11th. I'll see him again on August 18th, at 1:45 pm.
He noticed immediately that there were clues in the way that I walk, and balance issues, that clearly suggest early stages of Parkinson's disease. When he did some simple reflex tests on my feet and legs, I was surprised to see that my feet and lower legs are virtually dead.
. IOW, my sensations of touch, cold, etc., are way below par, below my ankles, and gradually improve to pretty much normal, above my knees. He seemed surprised that I hadn't noticed any problems walking, but maybe that's because I've been taking treatments for most of my life - tobacco is protective of Parkinson's and Alzheimer's, and so is caffeine, apparently. (Believe it or not). Parkinson's disease causes the loss of dopamine from the brain, which interferes with the ability of the brain to communicate with the limbs. Caffeine and nicotine, (and possibly other chemical agents in tobacco), help to protect against neuronal damage, by inhibiting the enzymatic oxidation of dopamine).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.
Don't worry, Parkinson's typically progresses very slowly, so I'm not really upset about it, at this point. It's possible that the date of my initial development of the disease may have been pushed way forward, by exposure to certain pesticides used in agriculture, decades ago, (they were pulled from the market, decades ago). I used those pesticides on a very limited basis, and I used all the recommended safety precautions, (at the time), but as we all know, sometimes "stuff" happens, anyway, despite our precautions. Since there's no known history of Parkinson's in my family, chances are, the disease would have presented much later in my life, such as the 80s, or 90s, if it hadn't been "accelerated", but that's pure specualation, of course. By catching it early, hopefully I'll be able to slow down the progression, (with my bad habits
, and certain medications). He gave me some Azilect to try. Anyone know anything about it? It appears to do the same thing that nicotine and/or caffeine do, (except that the side effects are worse - possible life-threatening BP spikes, if you eat foods that contain significant amounts of tyramine). I wonder how the effectiveness compares.The bottom line is, we won't really know anything definitely, until the test results are analyzed, so nothing is carved in stone, at this point.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Wow Tex,
That has got to be a shock.
At least it sounds like you have a useful neuro for him to notice your other signs.
I am betting that within a few hours you'll know more about Parkinson's than the average GP. Having the skills to manage your own health puts you way ahead of the pack with chronic conditions.
Best wishes.
Lyn
That has got to be a shock.
At least it sounds like you have a useful neuro for him to notice your other signs.I am betting that within a few hours you'll know more about Parkinson's than the average GP. Having the skills to manage your own health puts you way ahead of the pack with chronic conditions.
Best wishes.
Lyn
I have no doubt that you will also know a lot about the other symptoms, conditions too!!!! You truly are amazing. 
I am so very glad that you went ahead with the neurologist appointment. Isn't it great that you have now found out about all these things and can do whatever is possible to minimize the effects.
Of course, I'd rather you not have the problems but better to know about them, I believe, since you do in fact have them.
It is rather amazing that you didn't have any idea about the problems with your feet and legs. I always figured you were one tough guy. You'll do OK, I have no doubt.
Love Shirley
I am so very glad that you went ahead with the neurologist appointment. Isn't it great that you have now found out about all these things and can do whatever is possible to minimize the effects.
Of course, I'd rather you not have the problems but better to know about them, I believe, since you do in fact have them.
It is rather amazing that you didn't have any idea about the problems with your feet and legs. I always figured you were one tough guy.
You'll do OK, I have no doubt. Love Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
I'm glad you found out what maybe causing the mystery of your symptoms, and we all know that you will be fine. You have to be, you are the glue that holds this internet family together. 
I have a friend that was diagnosed with Parkinsons years ago, he is a farmer, and his was probably from chemical exposure also. I think that is the drug that they put him on, and he has done wonderfully on it...He loaded a round bale feeder into the back of my diesel for me, using the hay spike on the front of his JD...to be able to pick that thing up and set it into the bed without ever touching either side and dinging up the paint says quite a bit about how well the drug is working for him...I hope you have similar luck with it...
Cowboy up, we have all the faith in the world in you....
Hugs,
C
I have a friend that was diagnosed with Parkinsons years ago, he is a farmer, and his was probably from chemical exposure also. I think that is the drug that they put him on, and he has done wonderfully on it...He loaded a round bale feeder into the back of my diesel for me, using the hay spike on the front of his JD...to be able to pick that thing up and set it into the bed without ever touching either side and dinging up the paint says quite a bit about how well the drug is working for him...I hope you have similar luck with it...
Cowboy up, we have all the faith in the world in you....
Hugs,
C
Wow - what a surprise diagnosis. I'm sure you never suspected Parkinson's.
It's hard to believe that you never noticed that your feet and legs have virtually no sensation. It's pretty scary actually, because you always seemed so in tune with your body. I guess if you're not looking for something, you don't always notice it.
I'm glad you went to the neurologist and got some answers, even though it's not the news you expected. Now you can treat the proper problem. I hope that the disease will progress slowly, as you've said. If anyone will be able to research all aspects of it, you will.
Gloria
It's hard to believe that you never noticed that your feet and legs have virtually no sensation. It's pretty scary actually, because you always seemed so in tune with your body. I guess if you're not looking for something, you don't always notice it.
I'm glad you went to the neurologist and got some answers, even though it's not the news you expected. Now you can treat the proper problem. I hope that the disease will progress slowly, as you've said. If anyone will be able to research all aspects of it, you will.
Gloria
You never know what you can do until you have to do it.
DRINK UP!Well, I knew that my feet weren't exactly perfect, but I just assumed that it was due to problems with poor circulation, or something of that sort. When there's no pain, it's easy to assume that everything is fine. LOL.
Parkinson's was the last thing on my mind, because everyone I've ever known, who had it, had those characteristic tremors. Obviously, that isn't always the case.
Thanks, everyone. I appreciate your concern. I don't think that I'll have any problems.
Tex
Parkinson's was the last thing on my mind, because everyone I've ever known, who had it, had those characteristic tremors. Obviously, that isn't always the case.
Thanks, everyone. I appreciate your concern. I don't think that I'll have any problems.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I'm relieved that you are getting some answers, although I'm sorry you have been gobsmacked. I'm also glad you have further tests scheduled so that no stone will be left uncovered. Your neurologist sounds quite thorough....it's good that you hit it off with him.
I find your comments about gluten sensitivity and Parkinson's disease (PD)
intriguing. I googled "celiac and PD" and a number of references popped up. One is about Michael J. Fox, who recently went to Bhutan and found that his PD improved dramatically. Of course, it could have been due to many things, but on the webpage (on celiac.com) a celiac lady was wondering if it could have been diet. She has been there and says there is no gluten whatsoever in the diet.
We often say that we have the largest study group of MCers in the world here on this website, and it occurs to me that we have the opportunity to follow MC/gluten sensitivity over many years to see what the natural outcome is. There is no question that gluten sensitivity affects the brain. I recently saw a study linking it with dementia.
Anyway, how are YOU feeling about all of this? You sound like your usual, optimistic, laid-back self! I know you are someone who always takes things in stride, which is such an inspiration for all of us.
Don't forget, Luce is an expert on PD and, I'm sure, would be happy to dialogue with you if you wish. And, of course, all of us here are available anytime for you. After all you have done for everyone else, don't ever hesitate to ask for any favors, support, etc.
Rosann Rosanna-danna was right, wasn't she?
Lots of love
and a
Polly
I'm relieved that you are getting some answers, although I'm sorry you have been gobsmacked.
I'm also glad you have further tests scheduled so that no stone will be left uncovered. Your neurologist sounds quite thorough....it's good that you hit it off with him.I find your comments about gluten sensitivity and Parkinson's disease (PD)
intriguing. I googled "celiac and PD" and a number of references popped up. One is about Michael J. Fox, who recently went to Bhutan and found that his PD improved dramatically. Of course, it could have been due to many things, but on the webpage (on celiac.com) a celiac lady was wondering if it could have been diet. She has been there and says there is no gluten whatsoever in the diet.
We often say that we have the largest study group of MCers in the world here on this website, and it occurs to me that we have the opportunity to follow MC/gluten sensitivity over many years to see what the natural outcome is. There is no question that gluten sensitivity affects the brain. I recently saw a study linking it with dementia.
Anyway, how are YOU feeling about all of this? You sound like your usual, optimistic, laid-back self! I know you are someone who always takes things in stride, which is such an inspiration for all of us.
Don't forget, Luce is an expert on PD and, I'm sure, would be happy to dialogue with you if you wish. And, of course, all of us here are available anytime for you. After all you have done for everyone else, don't ever hesitate to ask for any favors, support, etc.
Rosann Rosanna-danna was right, wasn't she?
Lots of love
and a Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.