Bruce
11-27-2000, 08:25 PM
Just had a thought I would like to share with everyone. I don't claim to know everything about PD, but have spent many hours researching it. What I suspect is their might be a lot of PD people that have assumed their present treatment and condition is as good as it gets. This is not a "pep" talk, but if you aren't doing well their are much more informed neurologists at the Parkinson centers and they have access to drugs that may not be on the market yet. If you are not happy with your condition or treatment be assertive and try to stay informed about PD research, and it is possible your quality of life might be much better then it is now. What have you got to lose?
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dbiker2
11-28-2000, 02:19 AM
I totally agree Bruce, In July a Parkinson's Care and Research Center opened here in NW Washington and I have switched over to it. My previous neurologist was a very nice lady and she appeared to try to stay current with PD advancements and I have been seeing her for over 10 years. But this new center is very impressive. I have had 3 appointments and my next is on the 14th. They immediately made a major med adjustment and other than a 2 week battle with some severe dyskensia my quality of life has definitely improved. They are also pioneering a new approach to the treatment of PD, at least I think they are, if anyone knows of another center with this approach let me know. They have a staff all in the same center thats works together on movement disorders only and specializing in Parkinson's. They are able to treat all areas the PD may affect. They have of course a neurologist, a psychiatrist, a nutritionist, physical therapist, occupational therapist and a speech therapist. They have a 4-6 hour evaluation, which I will be taking in January, where you are examined by each specialist and then at the end everyone meets together and a specialized treatment plan is developed specifically for you. I a very excited about this and am looking forward to it. Everyone I have met is knowledgeable, personable and caring. A great place.
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Darrell
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Darrell
Bruce
11-28-2000, 01:33 PM
It looks like you had an experience like mine. My local doctor kept insisting I should reduce the dose of Sinemet and when I told him my symptoms were worse and could barely get out of bed but that didn't seem to concern him.
When I visited Dr.Hubble she listened closely to my responses to her questions. Instead of decreasing the meds, she added Comtan and Amantadine and my on time was increased. If I would have stayed with the local "expert" I would probably be bed ridden in a nursing home and "climbing the walls."
Another experience I had was the local doc recommended I see a neurologist when I visited my sister in South Carolina. At first he thought the only reason I was seeing him was to be able to get refills. Then, after a lengthy discussion and no examination for PD, he looked at me and said "I don't see any symptoms of Parkinson. He told me I would have to go to the medical center and they would "test" me to see if I had PD. At about the end of our conversation, he said "you are between a rock and a hard place." To say I was "steamed" would be an understatement. I didn't have any doubt I wasn't going to see this doctor. This was a time before a had a computer and before I saw Dr. Hubble. and I had a lot to learn about PD. So just going to a neurologist is not necessarily a good thing.
Your program looks good. From what I have learned, dyskinesia isn't always permanent and can be suppressed if you have a PD specialist for a doctor.
I guess you could say you and I are examples of taking that step and seeing a PD specialist has improved our quality of life.
Bruce
When I visited Dr.Hubble she listened closely to my responses to her questions. Instead of decreasing the meds, she added Comtan and Amantadine and my on time was increased. If I would have stayed with the local "expert" I would probably be bed ridden in a nursing home and "climbing the walls."
Another experience I had was the local doc recommended I see a neurologist when I visited my sister in South Carolina. At first he thought the only reason I was seeing him was to be able to get refills. Then, after a lengthy discussion and no examination for PD, he looked at me and said "I don't see any symptoms of Parkinson. He told me I would have to go to the medical center and they would "test" me to see if I had PD. At about the end of our conversation, he said "you are between a rock and a hard place." To say I was "steamed" would be an understatement. I didn't have any doubt I wasn't going to see this doctor. This was a time before a had a computer and before I saw Dr. Hubble. and I had a lot to learn about PD. So just going to a neurologist is not necessarily a good thing.
Your program looks good. From what I have learned, dyskinesia isn't always permanent and can be suppressed if you have a PD specialist for a doctor.
I guess you could say you and I are examples of taking that step and seeing a PD specialist has improved our quality of life.
Bruce
LiceN
11-28-2000, 05:54 PM
Bruce, You and Darrell have summed up exactly, my feeling about the care my husband has had. There never has been a change of meds, except I did ask to try comtan, and they didn't reduce any of the sinemet he took. I take him to B'ham,Al. and there is no Movement Disorder Center there. I am looking into the possibility of one being in Nashville, Tenn. I intend to write Dr. Liberman to see if he can recommend a center close or even several hours drive from our home. Betty D.
Bruce
11-28-2000, 07:14 PM
Betty D, I am very glad to see you on the new board. I read all of Dr. Lieberman's Q and A and he frequently is very helpful in recommending a PD specialist near where you live. More than onxe he has said if it is something thst you constantly worry about, then make the effort to go to a doctor or PD center that is more likely to help you.
It still amazes me how many doctors are so ignorant in knowing how to treat PD. Dr. L is the best and he is a caring person. You couldn't find a better source then Dr. Lieberman. Good luck
It still amazes me how many doctors are so ignorant in knowing how to treat PD. Dr. L is the best and he is a caring person. You couldn't find a better source then Dr. Lieberman. Good luck
pete
11-28-2000, 09:05 PM
*Bruce,
You are so right. We all need to be close observers to what is happening to us. Listen attentively to what the drss tell us and be willing to bring up any thing that does not fit our findings. We should not be intimidated by someone who is a real great dr. --mine is the best- and i have the highest regard for his methods he uses to help me. He told me as a patient and a member of a Parkinson Support Group that we were the experts in a disease like pd. He encourages patient input into all facets of patient treatment.
take care -pete
You are so right. We all need to be close observers to what is happening to us. Listen attentively to what the drss tell us and be willing to bring up any thing that does not fit our findings. We should not be intimidated by someone who is a real great dr. --mine is the best- and i have the highest regard for his methods he uses to help me. He told me as a patient and a member of a Parkinson Support Group that we were the experts in a disease like pd. He encourages patient input into all facets of patient treatment.
take care -pete
Bruce
11-28-2000, 09:54 PM
Pete, I am envious of your good luck in having a great doctor. He seems to have that good old "common sense" It takes a lot of maturity and inteligence for a doctor to really listen to what we are trying to tell him.
I meet with the neurosurgeon Dec. 7. I am trying to make sure he will have enough of my medical records so their won't be any delays. I might get it done in December, but still not sure.
Take care Pete. You have great writting skills.
I meet with the neurosurgeon Dec. 7. I am trying to make sure he will have enough of my medical records so their won't be any delays. I might get it done in December, but still not sure.
Take care Pete. You have great writting skills.
Pelicangirl
11-29-2000, 03:11 AM
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[This message has been edited by Pelicangirl (edited 01-12-2001).]
[This message has been edited by Pelicangirl (edited 01-12-2001).]
Bruce
11-29-2000, 11:56 AM
Ruth, Your comments were very similar to my experience and if their isone thing I have strong feelings about is the God complex thing. I have worked around doctors in the hospital most of my life and their are many doctors who try to play that role. It tends to make a doctor have a closed mind and they think you are questioning their reputation. What can make it lethal, is if the patient also thinks his doctor is God, and never has a thought about speaking up and asking questions. It is precisely that reason(speaking up) that my friend is still alive today. He took charge of his health care and got the hell away from the little group of doctors that all had misdiagnosed him and were gradually leting him die from cacer.
With the experience and knowledge I learned as a microbiologist, I could easily detect who knew what he /she was doing and who that didn;t have a clue. Sometimes it was a little scary when I would see that a patient was given the wrong antibiotic. This is why it is common to see patients receiving a "broad spectrum" antiobiotic so the doctor thinks he has covered everything. (Their is no such thing as a "broad spectrum antibiotic)
The biggest problem I think is their is very poor communication between doctor and patient.
Another big problem is how often does anyone see a doctor prescribing an antibiotic for a simple viral respiratory infection? Doing this actually can prolong the infction, because antibiotics have no positive effect on a virus. Bruce
With the experience and knowledge I learned as a microbiologist, I could easily detect who knew what he /she was doing and who that didn;t have a clue. Sometimes it was a little scary when I would see that a patient was given the wrong antibiotic. This is why it is common to see patients receiving a "broad spectrum" antiobiotic so the doctor thinks he has covered everything. (Their is no such thing as a "broad spectrum antibiotic)
The biggest problem I think is their is very poor communication between doctor and patient.
Another big problem is how often does anyone see a doctor prescribing an antibiotic for a simple viral respiratory infection? Doing this actually can prolong the infction, because antibiotics have no positive effect on a virus. Bruce
Bruce
11-29-2000, 01:55 PM
An example of the God complex (this is funny): when I had a car wreck, I was transported to a large trauma center. I am not sure why, but I have no memory of anything that happend that day including about the first or second day as a patient in the hospital.
When I become aware of what was going on, I first noticed every day I was visited by doctors or residents that included about every specialty that was available.
After awhile, I am guessing about two weeks, I started asking anyone that visited me I would like to be transfered to my local hospital, because it would save me a lot of money according to the insurance rules.
Then one day, while they were serving me lunch and another resident was taking his turn in examining me, the head "shrink" came in with another doctor following close behind. My first thought is they must think I am crazy. The head "shrink" really fit the profile. He was very pompous and seemed to be condescending to me. While all of this activity was going on and my lunch growing cold, he proceded to give me mental tests. Of course, my concentration was poor and I really didn't try to hard, I "flunked" his test. He seemed cold and impersonal and he was my choice for "doctor with a God complex" of the year.
After I was finally transfered to the local hospital and then dismissed, I was sent some of the medical records. I read the "shrinks" consult summary and it was really funny. He said I seemed to be very fearful about having more surgery. I didn't even know at the time he tested me their were any plans to take me to surgery. As it turned out I never had the surgery and learned it wasn't necessary. If this doctor would have simply asked me if I had a problem, I would have told him the only problem I have is I want to get out of this place. Here you see the director of his department couldn't get it right. Bruce
When I become aware of what was going on, I first noticed every day I was visited by doctors or residents that included about every specialty that was available.
After awhile, I am guessing about two weeks, I started asking anyone that visited me I would like to be transfered to my local hospital, because it would save me a lot of money according to the insurance rules.
Then one day, while they were serving me lunch and another resident was taking his turn in examining me, the head "shrink" came in with another doctor following close behind. My first thought is they must think I am crazy. The head "shrink" really fit the profile. He was very pompous and seemed to be condescending to me. While all of this activity was going on and my lunch growing cold, he proceded to give me mental tests. Of course, my concentration was poor and I really didn't try to hard, I "flunked" his test. He seemed cold and impersonal and he was my choice for "doctor with a God complex" of the year.
After I was finally transfered to the local hospital and then dismissed, I was sent some of the medical records. I read the "shrinks" consult summary and it was really funny. He said I seemed to be very fearful about having more surgery. I didn't even know at the time he tested me their were any plans to take me to surgery. As it turned out I never had the surgery and learned it wasn't necessary. If this doctor would have simply asked me if I had a problem, I would have told him the only problem I have is I want to get out of this place. Here you see the director of his department couldn't get it right. Bruce
pete
11-29-2000, 02:20 PM
Hello Bruce
I learned the good news that you are one step closer to the dbs. You apparently have been waiting a long time-beyond that which is reasonable-to hopefully gain some much needed relief from the many slings and arrows tossed your way by the tormentor of all tormentors -pd. I sure hope this will prove to be exactly what the doctor ordered and an d exacty what the patient needed
My mind flashes back to the year 1996 when in the month of July i was preparing for my pallidotomy--the situation and circumstances were very different
I had just survived my 4th back surgery in a 2 year period. I was having extreme difficulty with every kind of pain that i had ever heard existed. But, when i started having the dystonic pain in my leg and shoulder and back muscles--all of the others just seemed to dissipate
When offered the pallidotomy i didn't think twice before asking my dr if he could schedule it the next day.
No, but it was within a resonable time framne. And, most importantly of all, the surgery did for me what the major objective was at that time--relieve the agony of the twisting and contorting my muscles were having at the hands of dystonia. It took some several weeks to ascertain the good fortune i, indeed had, because i did not have the episodes of dystonia on any given schedule. But when 1 week went by and no dystonia--i praised God over and over!!
I am sorry i got so immersed in this ancient history stuff-I know you have objectives in your upcoming surgery. Mine is to render a fatal or at least a major blow to bradykinesia. All aspects of this monstor give m e a fit.
Again, all the words of encouragement and wishes for nothing but the best for you as you place your body in the hands of the surgeon, but know that God's hands are there too.
I promise this is the last aside- During my surgery the only thing i remember with clarity was when he first put the probe in the opening, the dr. saying "Mr. DeFord, you are going to have to help us get this thing in the right place"--I want you to start from ten and count backwards--I remember starting, but thats it. From then on, it was the doctor's show.
take care -pete
I learned the good news that you are one step closer to the dbs. You apparently have been waiting a long time-beyond that which is reasonable-to hopefully gain some much needed relief from the many slings and arrows tossed your way by the tormentor of all tormentors -pd. I sure hope this will prove to be exactly what the doctor ordered and an d exacty what the patient needed
My mind flashes back to the year 1996 when in the month of July i was preparing for my pallidotomy--the situation and circumstances were very different
I had just survived my 4th back surgery in a 2 year period. I was having extreme difficulty with every kind of pain that i had ever heard existed. But, when i started having the dystonic pain in my leg and shoulder and back muscles--all of the others just seemed to dissipate
When offered the pallidotomy i didn't think twice before asking my dr if he could schedule it the next day.
No, but it was within a resonable time framne. And, most importantly of all, the surgery did for me what the major objective was at that time--relieve the agony of the twisting and contorting my muscles were having at the hands of dystonia. It took some several weeks to ascertain the good fortune i, indeed had, because i did not have the episodes of dystonia on any given schedule. But when 1 week went by and no dystonia--i praised God over and over!!
I am sorry i got so immersed in this ancient history stuff-I know you have objectives in your upcoming surgery. Mine is to render a fatal or at least a major blow to bradykinesia. All aspects of this monstor give m e a fit.
Again, all the words of encouragement and wishes for nothing but the best for you as you place your body in the hands of the surgeon, but know that God's hands are there too.
I promise this is the last aside- During my surgery the only thing i remember with clarity was when he first put the probe in the opening, the dr. saying "Mr. DeFord, you are going to have to help us get this thing in the right place"--I want you to start from ten and count backwards--I remember starting, but thats it. From then on, it was the doctor's show.
take care -pete
Bruce
11-29-2000, 11:36 PM
Thanks Pete. Don't feel bad about writting to much, because I can't seem to shut up.It is interesting that after all the waitting, I am very relaxed and have no fear of anything they are going to do to me. I am going to make sure the surgeon knows I am very eager to have it done.How is that for an attitude? Bruce
pete
11-30-2000, 11:00 AM
Bruce
You are ready--a relaxed, well-informed patient with an excellent attitide is what every surgeon would like to have as he prepares to poke around in a cavity as vital as the brain.(I don't like the word poke--how about search--don't like that either --they both make it sound as if they don;t know where they are going. How about "enter"--that is not a commital word -it says nothing about where he is going or what he is going to do.
how's that --i have used 8-9 lines and said nothing--again, i compliment you on your preparedness
pete
You are ready--a relaxed, well-informed patient with an excellent attitide is what every surgeon would like to have as he prepares to poke around in a cavity as vital as the brain.(I don't like the word poke--how about search--don't like that either --they both make it sound as if they don;t know where they are going. How about "enter"--that is not a commital word -it says nothing about where he is going or what he is going to do.
how's that --i have used 8-9 lines and said nothing--again, i compliment you on your preparedness
pete
dbiker2
11-30-2000, 11:19 AM
Pete,
Just had to comment on your 8-9 line comment.
But you did it so well!!! :) :)
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Darrell
Just had to comment on your 8-9 line comment.
But you did it so well!!! :) :)
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Darrell