I am wondering what Datscan results would look like in "Benign Tremulous Parkinsonism." I have had a resting tremor for 7 years. (I take only Azilect). Have some minor right side stiffness which may or may not be PD-related. My MDS was stumped until we got the Datscan results. Clearly PD.

Why didn't the study on "Benign Tremulous Parkinsonism" perform a Datscan on those patients? The test was available in Europe a decade ago.

Parkinson's disease appears to be an umbrella term for a myriad of disorders with different root causes, mostly genetic.

PD or BTP
 

I was in denial in my first years of PD. I lasted 5 years with just a mild tremor generally caused by a bout of stress During those first 5 years I managed a large chemical factory, making organic peroxides which are very inflammable and hazardous. You don't get more stressful than that. They were used by the London bombers. I did not progress at all during this 5 year period. I retired at 60, and went on endless world holidays during the 15 years since I retired. I have progressed relatively slowly. My tremor has almost gone but my PD symptoms have progressed steadily. Main difficulty is walking. I also perspire a lot, and have difficulty swallowing. I have just given up driving in spite of feeling confident when behind the steering wheel. Since I was diagnosed 20 years ago, I was prescribed Sinemet from day 1, which was far too early. This has now given me raging dyskinesia, and writhe for hours on even a half stavelo.
So if you are below 5 years since diagnosis, be careful not to get too excited, believing you have BTP. it can be PD and you are in what some call he honeymoon period" of up to 5 years. I hope however for peoplr like littlesky that it is BTP not PD. I wonder what the ratio of BTP is out of total cases?
Ron

PD or BTP
 

Ronhutton, I will take your wise advice, keep with the healthy lifestyle, take my Azilect (for whatever it's worth) and try not to get excited. I asked my MDS and she, at a prominent MD clinic, hadn't seen the 2006 Mayo Clinic study. The one observation she made worth sharing is that one's rate of progression will remain constant. So if slow or almost nonexistent from the start, that is what you can expect. No sudden kick into high gear. She said that those of us with apparent BTP drew a lucky number in the PD lottery.

I asked about doing the Datascan. She said that was my choice, that insurance would cover, but that the results wouldn't alter treatment recommendations.

respectfully disagree
 

We too were seeing a famous MDS, specialty in PD no less, at a very very good teaching facility...I won't go into details but suffice it to say that reputation isn't everything. We, too, progressed slowly for several years. Then a few major stressors hit and we have progressed like a wildfire in the last year and a half. Stress is beyond a key factor.

I don't mean to scare you at all, and know this is not something anyone wants to hear. But I share it because it's true. Some stresses you cannot avoid, like death of a beloved family member or very close friend, we had several of those just right on top of each other, and I could definitely see the effect on PD, and it's permanent. Other stresses you really need to avoid like the plague, because that is what they are. They will take you down. Tell your friends and family why you cannot do this or that, and they should understand. If they don't or won't, too bad-it's your life!

We have had to learn to be able to say "we're just not up for that", "today is not working out to be a good day", "meds are not working today" (this one, unfortunately, is very common for us, we could say it every day), you get the idea. PD varies day to day and for us, hour to hour. Your circle of people needs to understand this. If they can't, get a new circle...we have found that even having to repeatedly explain that we can't do something and why, to people who already well know, is very stressful in itself. I think PD actually makes people more susceptible to stress in the first place-things that may not have stressed you out before dx now do, and in a much more pronounced way than they ever would have pre-pd. It's vicious.

You are wise to exercise, also key. You may have also read about how important humor is, get some good belly-busting laughs in every day (check out the radio or netflix/equivalent for the stand-up comedian channels, cheap and very worth it).

I would also add that if you don't have an animal in your life, get one. Heck, get two :) If an animal is not allowed where you live, or you feel you cannot take on that responsiblity, check out surrogate or foster programs in your area. Or just go to the animal shelter and volunteer if you are able. There is a reason nursing homes have animals brought in for their residents to pet, hold, and love on a regular basis.

I wonder about me...
 

At the NIH, the neurologist said I had the "slowest progressing form of PD." So I wonder if this puts me in the BTP category? I don't see the Dr Lungu each visit, but I suspect I'll see him by the last trip (May) at least. I'll be sure to bring the BTP info with me each of these final 2 trips.

I go to the NIH again this week and May is my last trip for the Kinetics clinical trial. I'll be glad to have it over -- monthly 5 hour plane rides to and from the NIH are no laughing matter! :eek:

just found this article: archneur.ama-assn.org/cgi/reprint/63/3/354.pdf

I don't think I have it - but the article above describes it pretty well.


Jean

PS I have had SPECT scans (like DATSCAN) that show I have PD)

PD or BTP
 

Right. I should have mentioned that the neuro said that rate of progression is constant UNLESS you fall, or need heart surgery, or encounter some other major stressor, as you say. Then all bets are off. But nobody plans for those things - they happen - no point in lingering there.

For now, I prefer denial. Along with exercise, meditation, and lots of veggies.

littlesky ...
 

I'm with you on the vegetables however my Neuro maintains that the rate of progression is pretty constant and while stress etc may magnify the symptoms while you are experiencing the stress, it will not make the underlying disease move any faster.

Interesting to know if this constant progression theory can be confirmed by the real world !! It seems to be so in my case over the last 9 years since dx.

Neil.

Update
 

I went to see a neuro yesterday - the first time in more than a year. I saw the new MDS at the Booth Gardner Clinic in Kirkland, WA because I wanted a fresh pair of eyes to look at my old file that has collected for 13 years in the same place.

He examined me thoroughly and talked to me at length, and determined that I was progressing as slowly as before, and that there was no reason to believe that the rate should increase in the future. (I imagine that any great stressor to my life might give my PD a negative jolt - but that same stressor would probably negatively impact my health even without PD).

He did not suggest I change my current drug regimen, which is one carb25/levo100 3 times a day; one amantadine 3 times a day; one- 1mg requip twice a day. We doubled my antidepressant from one - 20mg celexa a day to one 40mg celexa (20mg was the lowest dose possible).

I told him that I usually skipped the middle dose of cd/ld and amantadine if I was at home all day with nothing on my schedule that required I be on my best physical game. I said I was worried about the side effects, mainly dyskinesia, from too much dopamine. He said the only damage I do to my health is in quality of life - but if I can get away with it, then less cd/ld was a good thing over the long haul.

We didn't discuss "Benign Tremulous Parkinsonism", but I am less interested in labels than the actual state of my disease/symptoms. My most troublesome one is tremor in my hands, which can become very violent and tiresome and interferes with anything I do with my hands like eating, food preparation, dressing, and typing. I sweat a lot. My nighttime dose of medication is actually more important than my morning dose because I cannot sleep at all with the tremor or my body as rigid as it can become. I need the dopamine to relax and the tremor to be calmed if I am to sleep at all. I have not developed any gait or balance problems (knock on wood!).

I am only 54; have had a PD diagnosis for 13 years, and was symptomatic for 6 years before that. I hope to have many more years ahead of me - the hard part is preserving my mobility over a long period of time. If I had been 60 at diagnosis, then I think I would view my medication management differently. While a slow course of progression is largely a good prognosis, it remains difficult to know how to manage well for the long term - and I don't think many medical professionals have a good idea either. It's all a big experiment influenced by our own individual situations.

I saw my movement disorder specialist yesterday and, for the first time, she said I had benign tremulous parkinsonism. I have had the DATscan and definitely do have PD. I have had tremor for 7 years and it is slowly but steadily worsening. Now 52. Some stiffness in shoulders and arms but she couldn't see it and who knows if it is just age or PD. I asked when she thought I would start major meds (besides Azilect), 2 years, 5 years? She didn't know but seemed to think I would need something eventually.

She asked me to donate some cells for Parkinson's stem cell research, so I went and had a skin biopsy. Now I feel a bit more optimistic than usual and very virtuous. A good day.

Great news for you!