[highlake]

I have been followed for cognitive issues for a few years but developedPD like symptoms including recently a tremor in my left hand/arm which seems to come and go. Other symptoms include no left arm swing, periods of reduced mental acuity, fatigue, a facial "stare" or lack of expression, balance issues and difficulty deliberating motions, gait becomes slow and uncoordinated at times, muscle stiffness, difficulty swallowing, choking on food, difficulty formulating conversation at times. All of these seem to be beyond my normal ability to control. I had a DaTscan to rule out PD as I didn't think I had, but my Dad had PD and I was concerned. DaTscan results showed "asymmetric and decreased putamen activity bilaterally…Asymmetric decreased uptake of radio tracer is consistent with idiopathic Parkinson's" See the neurologist on Monday but NP said "you've got it" as I requested copy of report prior to seeing MD.

I have a question about the tremor issue. Mine have started fairly recently but come and go, and don't seem to present like many of the examples on this board. In fact, I've had no tremors for a few days. Can you have PD without tremors? If so, and DatScan results are reliable (Are they reliable?), will tremors develop more later? Where can I get more info on this? Thanks.

[soccertese]

i only have tremor when stressed or very cold and that only started years into the diagnosis. i lacked right arm swing years before the diagnosis. my diagnosis involved being observed walking up and down the hall a few times, looking at the heel of my right shoe to see if it was worn, finger tapping, rotating my wrists, the neurologist moving my arms - took about 10 minutes. i had a MRI to rule out something besides PD. I got a 2nd opinion where a similar exam was given. i couldn't believe i had pd at 47 and was still very physically active and had such subtle symptoms.

[highlake]

Thanks, soccertese. Can I ask how your symptoms have progressed? Looking at this thinking there's definitely something different going on with me but it doesn't feel like it would progress to something that serious, like if I just did something else like eat better or exercise more I'd be back to normal.

[soccertese]

there's a parkinson's rating scale but i haven't been rated on that for years so all i can give you is a comparison of what i can't do anymore without medication and can't do at al 11 years after diagnosisl.
CAN'T DO THE FOLLOWING WITHOUT MEDS every 4-5 hrs.
1. drive, run, walk any distance, write legibly, shower, enunciate - talk softly and slur my words - pretty much able to just sit in a chair or lie down. suffer from major fatigue unmedicated.

with medication working properly, i can do anything except change direction rapidly or feel safe jumping and am at 75% of my pre-pd condition.

i progressed slowly for the first 5-7 years, then it sped up.

so from what i've read i'm pretty typical. are you going to find someone with pd that is just a little worse off 11 years later? i doubt it.

[Peony]

Highlake: Can you have PD without tremors? Yes. From PDF website: "The diagnosis of PD depends upon the presence of one or more of the four most common motor symptoms of the disease [tremor, slowness, rigidity, balance]. Each person with Parkinson's will experience symptoms differently. For example, many people experience tremor as their primary symptom, while others may not have tremors, but may have problems with balance. Also, for some people the disease progresses quickly, and in others it does not." For more PD info, see websites for NPF, PDF, Mayo, MJFF, WebMD, etc.

I was diagnosed almost 6 years ago & have definitely progressed, esp. in the past few months, but still doing pretty well, though I have a severe tremor & muscle/joint pain. PD meds haven't helped me much if at all & can actually make me worse (dystonia), but that's apparently unusual (though not unknown). I belong to a large local PD group & know many people there & online, and progression rates, meds responses, & outcomes have varied tremendously.

My advice, for what it's worth: I don't think exercise or nutrition, etc., will cure anyone or prevent progression, but it certainly can help you do better for a longer time, so well worth doing in my opinion. Other advice: find a good neurologist/MDS that you like & trust, inform yourself, and be aware of meds' benefits vs. risks. Each Parkie is different.

[Aunt Bean]

I agree that tremor is not always a symptom...my brother and I don't usually tremor (I feel a small hardly noticeable tremor more often though in the last few months when I don't have enough l-dopa or when very tired or COLD (I absolutely do not do well if cold). The thing we noticed for years is a shudder...we both do it (like a cold shiver..even when not cold.)..when we were kids we used to say after shuddering ...a rabbit jumped over my grave and laugh.....who knows where that old saying came from?? I know my symptoms are progressing, but as long as I maintain some level of l-dopa in my system..they are not there (sometimes I work outside for many hours without taking tincture / or water...bad girl Aunt Bean...then I get very low and know what I would be like without having the tincture available...(it's about time to hide a dropper bottel in the greenhouse..).got low today already once, but got alot done first!

[highlake]

Neurologist today confirmed dx, said I had PD, expressed in such a way that didn't leave a lot of wiggle room. This all happened very quickly and I'll figure out a way to get my head around it. Kind of ****** off tonight but I'll get over it. Offered drugs which I'm going to hold off for now. Seeing MDS next. Thanks all for your responses. God Bless

[soccertese]

my advice on meds, if your quality of life is sig. diminished right now, seriously consider taking them because you need to be physically active to stay healthy. i waited far too long to take meds, stopped exercising as much and gave up activities i could have still enjoyed with meds.

you'll be tempted to browse the web looking for alternative therapies, a "cure". if you are tempted to try something, use the search function on this board to checkout other's experiences/opinions.