 |
 |
I am sure that many others have a better answer, but your message really disturbed me. My wife has only been diagnosed for 8 months; I am an engineer who has had some health problems, was a HiCap counselor to the elderly, and often comes up with (useless?) suggestions. But, here goes 1. Are you alone/ we work together tracking symptoms and drug reactions. That helps with all medical problems. This was stressed in our counseling training. Of course you are apprehensive. 2. A support group is exremely helpful. yes, it is a bit scary to see the condition some are in, but then you find out it has been 20 or 30 years, and people can still function and SMILE! everyone is helpful, sympathetic. Our group has great literature to check out or read there. We have two separate sessions before the main meeting (monthly) one for caregivers and one for voice training (many have difficulty speaking loudly and clearly -what a difference the class makes). There is usually an interesting speaker - one researcher from UCSB had statistical data showing that love improved sysmptoms....how about that? We have a separate chat group mid month, which is smaller and interactive. You need a doctor who LISTENS and REACTS supportively....he/she should check you out thoroughly but also communicate! He/she should be up on the latest treatments, which vary greatly. For instance: our Dr said "the approach I am taking with you is what UCLA would call right on target---but the med school i studied in would have a different approach - there is no single BEST approach that everyone agrees to. We will work together do what is best for your case." When you start a new medicine he/she should call you and check on its effect and follow up. when you call our Dr he almost always calls back after supper. This is a very strange disease (unlike my artery problems) and manifests itself in many different ways. The latest Mayo Clinic newsletter covered PD; it was quite negative in tone and really bothered my wife, because it was a laundry list of what CAN happen. Believe it or not, it never even mentioned stem cells. BUT dopamine is the problem; there is a problem with communication between your brain and the nerves that direct your muscles (and sometimes other things too).and to not try some of the new medicines is, to me, unwise. (unless you are alone and have no support system and caring doctor).(I almost said "stupid" because I really was shocked by your remark. and also because i am dealing with an ill sister, 3000 miles away, who also refuses to take her medicines as directed) -- Chalk it up to my being a know-it-all engineer - engineers always believe they can fix anything) t'aint true. . My wife tried Neupro and Requip over time, and both made her nauseous. I forget whether or not she has tried Mirapex. She is now on Azilect only. L-Dopa is the gold standard but over time side effects often develop, so the other meds were developed to help. PLEASE - someone who knows more please correct any misstatements that I have made. and give me hell if you feel i deserve it. Diana M wrote: > Hi there, > > I'm 66 years old. Two years ago I started to develop symptoms of > Parkinsonism, and a diagnosis of Parkinsonism was made by a > neurologist a year ago. > My main symptoms are: > --bodily weakness and difficulty moving, especially my left side, > especially getting up from a lying or even a seated position; I have > difficulty walking up stairs, and for example getting into and out of > a car; > --General slowness (bradykinesia); > -fatiguability and need for more sleep; > --difficulty keeping my balance--I have a tendency to start to fall > backwards. > There are very few tremors, except for very brief periods when I'm > overtired or under stress. I also tend to twitch a little at such > times. > My neurologist prescribed Mirapex, a dopamine agonist. This was when > I first saw him a year ago. I haven't started taking it yet. I'm > quite conservative with respect to pharmaceuticals, especially ones > that haven't been around for a long time. (Too often new > pharmaceuticals turn out to be harmful.) > QUESTION 1): What does anyone here know about Mirapex, and what > experience does anyone here have with it? I'm interested mainly in > folks who are taking it by itself. (I browsed through the archive, > and didn't find a lot that is relevant.) > QUESTION 2): Are there alternative medications or treatments I should > consider. (I try to stay as active as possible, walking --for 1/2 > hour on average-- often uphill), and doing hatha yoga about once a > week.) > I am also experiencing some generalized and chronic anxiety, which I > think must be due to not knowing what to expect as the disease > progresses. > QUESTION 3): What should I expect? What are the late stages like? > QUESTION 4): Can anyone offer tips or counsel or suggest resources > that will help me prepare psychologically for what I will encounter > down the road? > QUESTION 5) Can anyone offer tips or counsel or suggest resources > that will help me prepare in other ways for what I will encounter > down the road? > Thank you very much. > Diana M > > ---------------------------------------------------------------------- > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn