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Topic Sinemet may be a miracle drug for some - but not everyone Go to previous topic Go to next topic Go to higher level

By hapidawg On 2009.11.11 23:18
Sinemet was the first drug the doctors (University of Colorado Hospital Parkinson's Research Center) gave my husband. He did not respond. Adjusting the dosage up and down. In the end it made his symptoms worse and the docs decided this was not the drug for this particular patient and they suggested he has Parkinson's Plus (another whole round of research on this). Nothing much has helped and most drugs have increased the symptoms such as freezing, shuffling, confusion, lethargy, fatigue, etc. While he was taking Sinemet, swallowing very difficult. Off Sinemet he no longer has that problem. On one drug he was diagnosed with Alzheimer's. It was really bad. He totally failed the test. His meds were changed and he actually is able, once in a while, to do some chores - like rake leaves and his confusion is much less - although there is still some dementia. I have been through denial (big time) - research (tons) - hope (my husband still has it and I don't try to tell him otherwise) - grieving - and deep, dark depression. It's not easy watching your best friend and partner fade away. After reading many posts, I believe that these are all things most of us go through. My mantra is - what is, is. How you deal with it is about all you have - but we are only human and cannot deal with it perfectly every minute of every day.

I am not a person that believes everything a doctor says so I ask a lot of questions. I find it interesting that the docs (at least around here) skirt the issue about how bad it can get. The only thing our neurologist said is "It's a nasty disease." They don't tell you HOW BAD it can get. It's as if they don't want to be the one to fill you in on it's . . . ugliness . . . perhaps to save you dreading the future.

For a while, I felt sure PD was an infection of some kind (now I don't know what I think it is). Even wrote to a PD research scientist and asked if it could be a prion disease. Surgical instruments are sterilized and used over and over. Prions cannot be sterilized off the instruments. He said no, but I'm not sure.

Here's a question I'd like to know of the people of this forum. Has your spouse or loved one had surgery of any kind, major or minor, within a year of diagnosis? See . . . I'm still looking for answers.

By annwood On 2009.11.12 00:09
No, my husband never had surgery before his diagnosis of PD. I think that we all look for answers and in the end we probably know more about PD than some of the medical professionals. I also agree that physicans rarely tell PD pts what can happen. We have discussed that on this board in the past and there are varied opinions. I just know that I wanted to know but had to find out on my own. I am still angry at the neurologist. I'm sure he isn't loosing any sleep over it. I have always felt that my husband's PD might have been caused by prolonged exposure to DDT in the military 30 yrs before diagnosis. Just my hunch.

Parkinsons Plus is a whole other disease and it is my understanding that pts really don't respond to medication. The course is also shorter. Sorry that you are going through this.

By Emma On 2009.11.12 05:09
My husband did not have surgery before his PD diagnosis. I too have spent a lot of time thinking about what may have caused his Parkinson's and I have some theories, but at the end of the day I just don't know.

Our experience is similar to yours in that the doctors skirt the issue of how bad this can get. Like most everyone on this board I have done, and continue to do, my own research. In the beginning I would ask my husband if he wanted to learn about Parkinson's and he would say no so I just told him that if he ever did he could ask me. Until recently he hasn't. Now, just in the past month or so he's been asking questions about what happens at the end. I'm not going to lie to him, but I just give him little bits of information as he asks. Surprisingly this has not been as depressing to him as I thought it would be, in fact I think it's been a relief in a way for him to know, to talk about it, to be able to express his feelings and fears. And I think it has empowered him to feel that he's more in charge of what will happen as far as treatment options as the disease progresses.

I'm sorry for what you are going through. Hugs and blessings to you.

By Emma On 2009.11.12 06:38
I tend to get off on tangents and I forgot ... as far as Sinemet, it helped my husband at first but I don't think it's doing much anymore and he has a lot of involuntary movements as a side effect, which is not good. We're going back to the Parkinson's clinic to see a specialist in January, our regular neurologist wants them to review his medication.

By Newcaregiver On 2009.11.12 08:23
Annwood and all: you mentioned DDT exposure. My parkie had heavy exposure to Agent Orange in Vietnam. the VA has just announced that it is recognizing AgentOrange as "more likely than not" a cause of Parkinson's. That means any PD patients out there who were exposed to Agent Orange in the service can now apply for VA compensation. We are very pleased!

This finding wqas based on lots of research by doctors, particularly one doctor. I don't know his name, but his research must have convinced the government of the link.

By karolinakitty On 2009.11.12 08:38
Sorry hapidawg, no recent surgery here...

According to his neuro his might have resluted from his brain injury...I know a few others who have said the same thing. One was a construction worker who fell 25ft and hit the back of his head off something. a few others were horse injuries, from falling off a horse and hitting their heads. This makes total sense to me since a brain injury usually causes some type of long range problem.The dopamine in the brain was somehow affected by that particular injury. Now my mans injury was in several places, but from what i've read, and annwood correct me if i'm wrong, the dopamine is located at or near the base of the brain near the spinal column?

I'm not saying ALL PDrs had a brain injury just that's where we were told his might have been a complication of...

By mylove On 2009.11.12 08:57
TBI (traumatic brain injury) and occupational/industrial long term chemical exposure have both been identified as causes of PD. There is a wealth of documentation out there. If anyone needs info on the chemical/PD connection, we could point you in the right direction.

By packerman On 2009.11.12 09:49
sorry, no surgery prior to diagnosis of PD here either.

in our case, we think he was susceptible to the pest control chemicals from the service that came to our house for a couple of years. we also lived about 1/4 mile from a dump at one time...and you never know what kinds of toxins are in there.

By hapidawg On 2009.11.12 10:15
Thanks everyone. Now I can let go of "surgery" as a possible cause (and I'm even talking something simple, like dentistry). I don't think we'll ever know for sure. My husband has had a lot of bumps on the head too including a really nasty one when young and in football. He was in the service - two years - but no exposure to agent orange or anything else - that we're aware of. I think I'll have to let go of what caused it and let those thoughts be gone.

By annwood On 2009.11.12 11:00
I think that the chemical exposure is a real factor and remember many of us have had it so there is probably a secondary factor, like genetic predisposition, that allows PD to develop. In the 50's it was quite common for municipalities and the military to spray DDT for mosquitos. My husband was stationed in Florida and he said every evening the planes would fly over with DDT spray. We have another physician friend from New Orleans who also has PD and he speaks of the kids riding behind the truck spraying DDT so that they could cool off from the spray. Since this man and my husband were both surgeons you also wonder about the exposure to anesthesia in the OR. Neither the AMA or the military will provide the statistics for PD among their members. We have tried more from an intellectual pursuit than a legal one. There seem to be alot of physicians with PD but perhaps that is just the circle we traveled in. Mayo has done a study and found that there is a correlation between PD and intellect The higher the professional grade the greater the incidence of PD. I believe that this was an incidental finding and they are now doing a prospective study on it.

I don't know the stats on brin injury but it would make sense that any disruption to the brain would also result in a chemical change within the organ.

By hapidawg On 2009.11.12 11:27
annwood -
my husband can remember working in a field when a crop dusting plane came over and he was covered -

By susger8 On 2009.11.12 15:57
My dad grew up on a farm and used pesticides around our house, including Chlordane. He was also exposed to industrial chemicals (he was a mechanical engineer). Who can say? I don't remember his having any surgery prior to his diagnosis with PD, though he's had several surgeries since.

By Newcaregiver On 2009.11.13 08:41
correct me if I am wrong, Annwood - but I have read a lot that they think it is a combination of environmental exposure coupled with a pre-disposition. that would make sense if my pd'r got PD from agent orange, but is buddy next to him didn't. If he is pre-disposed genetically and then had the Agent Orange exposure that would then trigger the PD. There are a lot of Vietnam Vets with Pd.

By mylove On 2009.11.13 09:02
Yes, that's correct.

The prevailing wisdom is that predisposition is the loaded gun, and exposure (or some triggering factor such as traumatic brain injury) is what pulls the trigger. Your assessment is accurate.

By annwood On 2009.11.13 09:53
Thats correct. Same thing goes for cancer. My father was an identical twin - his brother developed PD and he didn't. There is so much we don't know about all of this.

By in-faith On 2009.11.13 10:00
And then there's my in-laws (almost 80) who both have PD. Obviously no shared genetics in this case. My FIL worked in an orchard and was exposed to sprays as a boy. Are there any known environmental factors causing PD? It seems so unusual that both in-laws would have the same disease unless there was some common factor.

By deflo On 2009.11.22 23:48
I just read this post and I too am convinced of the chemical connection to PD, My husband worked in the fields in CA picking crops for years. He said he too remembers the crop duster flying over head when they were working. He also would eat the fruit and tomatoes right in the field and never washed them. We recently took part in the 23andme genome reseach for PD that was being sponsored by MJF foundation. It was facinating to see that while he didn't have any of the known genes for PD he did have the markers for predisposition. It was facinating to see his genetic history. I think it's an ongoing study that will take years to compile all the results. they are looking for 10thousand pd pts worldwide to take part in the study, very interesting.

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