Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
First of all, I hope everyone who reads this will understand that I am only expressing my feelings and thoughts. They are not meant to offend or attack anyone, but instead I hope that they contribute to the purpose of this site so that we will all continue to feel comfortable coming together with others who share a common life challenge so that we can support each other, share information, and replenish our Daily Strength.
Backpacker and others have given us some thought provoking information this past week. While a lot of the information shared made some of us uncomfortable, I am confident he shared it with us because of his concern and probably his frustration with the current medical and pharmaceutical system we have available to us. I have to admit though, while reading his posts I personally felt unsettled, somewhat confused, and quite a bit discouraged. These feelings are not necessarily a bad thing, (although I dont like them very much lol). The questions, So what are we supposed to do then? kept crossing my mind. There is so much info out these days and most of it contradicts each other. Who do we trust and how in the world do we make good decisions for ourselves concerning this disease? were some of my thoughts.
All along, I have had a great deal of anxiety over the medical decisions I would be facing with this disease, especially those involving the medicines. I once asked a nurse (a sweet underpaid, overworked lady whose grandmother also has PD) what would happen if I didnt take any meds. She said You would eventually be unable to move. This is the problem we face with PD. This disease is slowly robbing us of our mobility and capability of controlling our body. And unfortunately, we have to rely on what is available in our localities, what we can afford, and what our insurance covers to help us, as frustrating and imperfect as it is. Ultimately we are the ones to make the decisions as to what courses of treatments we will follow and we and our families are the ones that will deal with the results good or bad.
Because I found some of BPs posts disconcerting, it made me stop and think about my own decisions concerning this disease and evaluate if I am being diligent enough in doing my research and asking enough questions. I dont, and think many others also do not have a medical background. The things I read and am told by the medical field often sound foreign and are sometimes hard to fully understand. I often feel overwhelmed with the amount of information out there and find a lot of it contradictive. Yet somehow I have to find a way to navigate through it and find a comfortable method in making these very important decisions for my life. My way may not be your way, and vice a versa. Or some of it may be very similar to yours. In general there is no right way or wrong way to deal with this disease. There is only the way we individually choose to deal with it and hopefully that turns out to be the right way for ourselves.
BP is sharing his individual research and his course of personal actions. We do not have to agree with him or follow his path. But for some what he has to say may be helpful and for others it may not be. If nothing else we can emphasize with his frustration. I respect him and his wife for sharing with us and hope they - and all others will continue to do so, even when it is disconcerting. :) Of course I would hope all would be respectful and tasteful when sharing. We have so much to learn from each other.
While on the topic of sharing, I would be interested in hearing your ideals and suggestions on navigating and processing the vast, often contradicting information network that is available concerning Parkinsons. What have you found helpful? What sites do you like? What factors do you consider in making your decisions? Do you find yourself as confused as me? Feel free to vent. Venting is good too!
Backpacker and others have given us some thought provoking information this past week. While a lot of the information shared made some of us uncomfortable, I am confident he shared it with us because of his concern and probably his frustration with the current medical and pharmaceutical system we have available to us. I have to admit though, while reading his posts I personally felt unsettled, somewhat confused, and quite a bit discouraged. These feelings are not necessarily a bad thing, (although I dont like them very much lol). The questions, So what are we supposed to do then? kept crossing my mind. There is so much info out these days and most of it contradicts each other. Who do we trust and how in the world do we make good decisions for ourselves concerning this disease? were some of my thoughts.
All along, I have had a great deal of anxiety over the medical decisions I would be facing with this disease, especially those involving the medicines. I once asked a nurse (a sweet underpaid, overworked lady whose grandmother also has PD) what would happen if I didnt take any meds. She said You would eventually be unable to move. This is the problem we face with PD. This disease is slowly robbing us of our mobility and capability of controlling our body. And unfortunately, we have to rely on what is available in our localities, what we can afford, and what our insurance covers to help us, as frustrating and imperfect as it is. Ultimately we are the ones to make the decisions as to what courses of treatments we will follow and we and our families are the ones that will deal with the results good or bad.
Because I found some of BPs posts disconcerting, it made me stop and think about my own decisions concerning this disease and evaluate if I am being diligent enough in doing my research and asking enough questions. I dont, and think many others also do not have a medical background. The things I read and am told by the medical field often sound foreign and are sometimes hard to fully understand. I often feel overwhelmed with the amount of information out there and find a lot of it contradictive. Yet somehow I have to find a way to navigate through it and find a comfortable method in making these very important decisions for my life. My way may not be your way, and vice a versa. Or some of it may be very similar to yours. In general there is no right way or wrong way to deal with this disease. There is only the way we individually choose to deal with it and hopefully that turns out to be the right way for ourselves.
BP is sharing his individual research and his course of personal actions. We do not have to agree with him or follow his path. But for some what he has to say may be helpful and for others it may not be. If nothing else we can emphasize with his frustration. I respect him and his wife for sharing with us and hope they - and all others will continue to do so, even when it is disconcerting. :) Of course I would hope all would be respectful and tasteful when sharing. We have so much to learn from each other.
While on the topic of sharing, I would be interested in hearing your ideals and suggestions on navigating and processing the vast, often contradicting information network that is available concerning Parkinsons. What have you found helpful? What sites do you like? What factors do you consider in making your decisions? Do you find yourself as confused as me? Feel free to vent. Venting is good too!
As with most diseases there is no one fix for PD. What works for you doesn't work for me (my wife). A minimum dosage of a med may work for you, and it takes a maximum for me to get the same results. Or what works for you, has unacceptable side effects for me. Additionally, what took 15 years of PD to distroy your health only took 5 years for me. Why does my balance issues cause me to fall backwards, and for you it's forward? A walker for you, a wheelchair for me. Why do you shake and tremble, but I can hold a full glass of water without spilling a drop, yet you can walk and I can't?
I have to say that PD is the most indiscriminate disease there is....it treats everyone differently.
After 14 years of internet research, I have come to rely on the Mayo Clinic web site and the Michael J. Fox Foundation for information. Locally, I used a great doctor here that I depended on totally for advice and information. Before finding him, I used and dismissed three others. He doesn't have the greatest "bedside manners" so my wife with the PD doesn't care for him much, but his wealth of knowledge and advice is what I relied upon. Unfortunately, he recently retired, so we're now searching for an equal replacement.
PD is a terrible disease over the long haul, but for most it can be "controlled" to a somewhat tolerable level at least for a couple of decades. It's what we do during those years that determins our true character. Do we let PD control us, or do we control the PD to the best of our ability? We may lose some battles from week to week, but from month to month and year to year, we can still win the war with our determination, knowledge, and the right meds.
Keep up the fight!!!!!!!!!!
Identify with the feelings don't compare the people, places and things. I take what I like or need and leave the rest. We are here to share our feelings, strength and hope not judge or criticize.
Most of my reading lately is the Michael J. Fox foundation stuff... and now thanks to Dan I will be looking to the Mayo Clinic site... any other good suggestions are welcome...
Keep up a good fight all... paula
A thoughtful contribution to our multi-log. You speak my mind.
Beekeeper
CM, The above is the last paragraph of your post.
The following comments are mine, alone, as none of you, or anyone for that matter, has my "brand" of PD. I've learned an awful kot in my 36 years carrying this hideous monster we know as PD around my neck. Because everyones DNA is totally different from each other, that the vastness of "bandaids" we all use will be just as vastly differing!
One important "tidbit" about PD that I've learned, about twelve years ago, was to keep the info that may apply to me and my particulae "brand" of PD and throw the rest away! Believe me, I've thrown away a lot more info than I've kept. I've found that atttitude, faith in a "higher power" than myself, and medicine where applicable, are some of the reasons I'm still here "barking at the bear (PD) up in the tree!
The "attitude" comes from the acceptance of my PD along with the oh so true saying: "Today I have PD, PD doesn't have me"! To me, that statement is a truism because it's helped me more than once to keep my sanity through the years!
For me, the med I've used the nost in the past eleven years has been Sinamet, or its' generic counterpart, Carbidopa/Levodopa. I took Requip for a little while about ten years ago, but that only lasted several months due to severe side effects. Where PD was taking over my body, the Requip had stolen my mental capacities. Fortunately for me, I realized what was happening to me before it got too late. I mean, being in front of my own house and not being able to find my way home! That was in the days just after the FDA had approved the use of Requip, so I can't really blame the docs. They knew only what the drug reps told them about the severe side effects. Anyway, for me at least, I was given the option of DBS/STN brain surgery. Brain surgery, the concept, was scarey enough, but me and ole man PD were goin' down the tubes, together, real fast. I had no other medicaloptions available. So, Mar 31, 2003 I had my first DBS "Hardware" implanted in my right brain and chest, for my debilitating left side symptoms. I would have to wait unttil Apr 10, 2003 to be "turned on". A kinda/sorta "kinky" phrase, but it fits.
During my early programming days it was soon discovered by my programmer that a "miracle", of sorts, was taking place before her eyes, with no apparent medical explanation. To wit: the unilateral implant, one side only, meant only for my left side symptoms was in fact, taking care of BOTH sides of my body. In fact, the 2nd DBS, for my right side had already been scheduled for Sept of 2003. Upon the discoveries of my "miracle", that 2nd DBS didn't occur for another seven (7) years!
Now, I'm going to share some info that I've shared with only one other PWP .......
I've been medicated with Sinament or C/L since 2001. In 2008 I was put on Zoloft after the death of my youngest son. Also, I was put on Clonazepam, 1MG at bedtime because about the same time I developed RSBD (Rem Sleep Behavior Disorder), in all probability, PD related. Now, as of June, 2012, I was taking all of those meds. The C/L, 25/100 X 8 per day, plus, 315 MCG of levothyroxine for my "supposed" HHypothyroidism..
Being a "student" of PD all of these years, I decided, on my own, with no medical okays or supervision, to quit all of the meds I have been taking for years, and substitute vitamins where needed. This of course needed blood labs to figure out. As "luck" would have it, I came down with another case of pneumonia again sometime during the next to last week of June. My blood was drawn for testing. Seven days later the results were back. They showed that my TSH (Thyroid Stimulating Hormone levels were way out of whack, the numbers were far too high, so my Levothyroxine was adjusted accordingly. Then, another startling discovery in my blood labs ... my Vitamin D levels were non-existant! So, I was put on 800 IU's of Vit D supplements per day. My Levothyrocine was cut to just .015MG per day. At the same time I added 1000MG of Vit B12 to my daily intake. for overall strength. My end stage emphysema had been really sapping my strength for months! Withing a week of these major changes I was feeling so much better that I wanted to see how far I could titrate myself sown OFF of the 25/100 C/L. Two startling facts: Today, I have successfully titrated myself down to just two (2) 25/100 C/L per day, along with the fact (my Neurosurgeon isn't going to like this but tough on him), I can go around most of each day with BOTH of my DBS units OFF! The most important fact/s: I feel totally, 100% better, physically and mentally, than I have for years.
Which leads me to a few suppositions:
1. Did/do I really have PD?
2. Are the mega doses of Vit D & B12, and cutting my daily dose of thyroid med more thsn in hslf contributing to my overall feelings of feeling better?
Don't get me wromg, I still have a very slight resting tremor in my left hand, and that's it. My right side symptoms are no longer present!
I've got some serious reconfiguring to do in the days ahead concerning my health. So far, so good. Which means, the only things I have to worry about are the jiller emphysema and the MRSA that is spreading throughout my internal organs!
Jim
I have not been around much lately....due to......life. I have read all the recent posts and....wow! Okay, as someone diagnosed fairly recently, I just have to agree with something CM said.... I keep thinking "What do I do then?" I only started the Sinimet a few months ago and before that, it was getting seriously seriously difficult for me to move, to walk, to grab anything with my left side. I could not swim, had to walk my dog whome is crazy strong and pulls hard to help me walk my kids to the bus stop. I know there are side effects.. I feel them now. Even on this small dose I am taking. However, the memory is very fresh in my mind how life can be without them. That is no life. I so appreciate all the research and information and web sites and experiences offered to me by all of you on this site. I would really be a basket-case without you guys. So would my poor husband. It is the responsibility of each one of us to keep informed, talk, share...and ultimately, do what is right for ourselves as individuals.
From reading everyone's stories, I am also reminded that each of us experiences this disease differently. For example, BP has had some horrible out there symptoms that I am grateful to not have the ability to say I can relate. I cannot. So he has to deal with it however he sees fit. Whatever works for him. I have an incredible respect for all here. Most of you have had this for a long time. Do what you need to do. Good luck to us all! Let's continue to give each other support in any way we can.
I'm going back to bed. The sinimet has made me sleepy now....lol
Good day all!