I would like to ask if anyone has experienced this....
 

I am almost 1 yr post DBS, I have not been able to decrease my sinemet below the doseage that I was taking prior to DBS- 2 tablets every 2 hrs. I can walk, do most anything that I need to. The DBS just alleviates the dyskinesia that I was having. At my last neuro visit I was adjusted again wherein my neuro changed the lead paramters on my dbs and told me I had to cut back on my meds. I walked into the neuro office yet afterwards I was bedridden, wheelchair bound, had to be helped with everything. When I took my meds I had what one ER doctor described as ballistic dyskinesia-just out of control with my arms and legs, my head going from side to side. This was treated with ativan. I was in the ER twice, admitted for 3 days due these reactions, and I was placed in a nursing home because my wife couid not care for me by herself. I was sent to a MDS in Orlando. I was wheelchair bound and weak. My brother in law had to lift me into and out of his truck. I was examined and allowed to take my medication (sinemet). I had a very rapid response wherein I was able to stand and take a few steps within a few minutes. The tech returned my settings to where they were prior to my last "adjustment" by my neurologist. I was then able to leave the office WALKING. I did not return to the nursing home. I went home instead. On return to the MDS, he again examined me- the usual toe tapping, etc. I told him that I was feeling exceptionally loose. He even had my wife move my wrists and knees to show her that I had no cogwheeling rigidity,etc. He then proceeded to tell me that my PD is very well managed by my DBS. My symptoms in that I feel that I need medication, or that I am stiff are psychological and that they just arent' there. When I referred to my desire crawl instead of walking sometimes when I dont feel strong enough- he replied "Its all in your mind. That does not happen to Parkinsons patients!" He commented on how quickly I arose on my prior visit by saying that these medications don't work that fast. Well, I don't know what to say. I felt better after a few minutes and I stood up. I was hardly walking around. So now PD is in my mind. Upon leaving the office my wife says "see you dont need that medication". Anyone else had this happen to them? Have you had a fast reaction to the meds? He inferred that I seem well read on PD, that my vocabulary about the disease fits a patient that knows too much. He ended the visit by encouraging us to seek a psychiatrist.

get another opinion asap
 

Is your neuro a MD specialist or better, a PD specialist? If not, get one and get a second opinion. Your guy does not sound like he is very familiar with the nuances of PD, and his bedside manner leaves a lot to be desired.

No one wants to take more meds than necessary, but if you, who KNOW how you feel without taking them, need them, then take them. That's what meds are for. And you know from reading about PD that everyone differs in just about every way possible with this disease, from how much sinemet they need, to how fast it acts, to which meds even work for them. I can tell you some days sinemet takes two hours to hit, other days, for whatever reason (what you ate, stress level, etc.) it can kick in within 15 minutes (wish every day were like that for us!).

Read previous posts in this forum, you will find a wealth of information which hoepfully will put your mind at ease. One of the most important things is to have a doc who is on your side! Doesn't sound like you have one of those, so you might want to get one, as soon as you can. And don't feel bad, we are on neuro #4.

You may also want to encourage your wife to read about PD from the caregiver's side-there is a fabulous forum just for this (warning, it can be depressing, but the information and support far outweigh that attribute). This site is all about how caregivers can help and support the PWP, in both the physical and emotional sense. Like this site, it is extremely informative and addresses many of the nuances of PD that too many doctors are clueless about. Your wife's comment that "you don't need those medicines" may not exactly support you in your quest for maintaining optimal functionality and independence, so perhaps reading through the posts may help shed a little more light into what you have to deal with on a daily basis.

Good luck in finding a doc who will support you, it's worth the search.

THis kind of......
 

disbelief that one's symptoms are all "some kind of mental fabrication" REALLY, REALLY, pishes me off, BIG TIME. WE are physically ill, for the most part we are not seriously mentally ill. Sure, some of the unexplainable quirks that we experience may be "unbelievable" to some people, but WE know that these things are REAL and not some figment of our imagination, or attention getting ploy. Only a very experienced Neurologist understands the sometimes inexplicable vagaries of PD. Unfortunately, they are few and far between to find. The medical books need a total revamp in their descriptions of PD, and it's modern treatment, imho.

Ditch that doc
 

He's a jerk and an ignorant one at that. The truth of the matter is that most neurologists know very little of what little is known about PD. PWP are "messy" in that we don't heal and make the professional egos happy and we refuse to die and go away. Add in the fact that PD crosses disciplines and that the neuros don't even acknowledge it and you have the problem.

The best solution if you can afford it is a team made up of a neuro, a dynamite GP who will go to bat for you, an endocrinologist, an immunologist, and a GI guy for good measure. Few of us can afford that, but if I could only have one, I'd go with the GP.

The darned neuros should be learning from us instead of sneering.

in our minds? he's out of his
 

Just seeing this. I also take 2 sinemet every two hours. It does vary and is sometimes slightly less and decreases in the evening, but for the morning and up to the evening I usually need this much. If I don't, I get not only off, but dystonia - the very lowest of the symptoms which hurts and makes me extremely depressed.

Doctors who make statements like this and pass pwp off to psychiatrists should be threatened with malpractice. They should be required to take "practicums" , just like teachers are, with disease specific populations and learn it inside out. They only know the outside, and not very well, which makes them imcompetent.

Damnit - excuse me; I am supposed to be working on my spirituality. Visions of busting white collar criminal researchers and shooting doctors for stupid statements set me back a bit.

:(
paula

hello -
 

is there alot of stress in your mental lives?
give it to God -
and just think about lovely things - as much as it is possible
I am just thankful for all of you, and what I can still do -
and I love to laugh -
you all need a prescription for permission to laugh, and to
love yourselves... do not be angry w/ you for being ill...

do this - pictured in my signature~
hug someone or something or hug yourself everyday...

I wonder how many neuros
 

.... have been out of school for more than ten years? Before that they were taught that the nervous system was fixed and unchanging and that the thought of neural healng was laughable. I also wonder how many of those have learned otherwise?

My own is a good example. Very intelligent woman. Neuro and Internal Medicine too. Cleveland Clinic grad for gosh sakes! Last visit she was, as usual, pushing antidepressants and I, as usual, was resisting. I happened to say that while I didn't like the "Jack Nicholson" effect (ala "...Cuckoo's Nest") that I did understand their value in triggering the growth of some neurons.

For a second, she was actually speechless but, then, with almost a sneer she said "That's preposterous!" several different ways and handed me a prescription and walked out the door. One would think that such a bit of trivia would have been of interest. But I am a patient and am to be pitied but not listened to. Time to go neuro shopping I guess.

Ouch
 

Looks like the jury is still out on DBS. I understood DBS to be a vast improvement on Parkinson's condition and allowed the patient to limit his intake of Sinemet, Tolcopone, down to zero points. After reading Jim's story this does not appear to be the case.

Why go through such a demanding op, if at the end of the day, medication was still neccessary.

You guys in the US have some hard core neuros to deal with. Send those blokes down here to our little island in the sun for some compassionate training with our world class neuros.

In the meantime, anyone taking part in the Neurologix Gene Therapy phase two trials? www.neurologix.net

:hug: