Thanks Vicky for posting that and Carey that's good news!
Vicky do you or anyone else reading this know much about the autonomic nervous system in what I've been told in my case is idiopathic young onset P.D.?
I have a very low pulse rate and perspire profusely.
The sweating is annoying and a tad embarrassing but what I'd like to know more about is the pulse rate being so low, usually around 40 - 50.
Does anyone know if it will get lower as I reach middle age, the consequences etc?
Thanks,
Lee

Dear Lee,

I would reccomend bring that up with your physician. I also have a problem with sweating, but I have learned to live with it.

Low pulse rate could be caused by many different factors, such as cardiovascular exercise. Again consult your physician.

Neurologist are only now beginning to take patients seriously when they complain of autonomous problems. Autonomous problems usually do not show up until well advanced into the disease. I complained to my neurologist several times that I could not breathe. I was brought to the hospital several times, they would check my heart and exray my lungs, then send me home with a nebulizer. Not one neurologist, not even the one on call, would come in to see me. One told the emergency physician on the phone that Parkinson's had nothing to do with breathing difficulties. This was the same physician who diagnosed me with delayed stress syndrome after evaluating me for DBS surgery. He has yet to acknowledge his error in diagnosis even after I prooved the Parkinsons Diagnosis with the gene test and a modertly sever result of a FDOPA Pet scan done at Mount Zion in New York.

My son, a paramedic, watched as I tried to force myself to keep breathing while we waited for the paramedics to arrive. He swears only my diaphram muscles (strong from playing woodwind instruments) was moving, he saw no movement in the upper chest walls. He also described my breathing as having what is known as a death rattle. His crying and telling me to keep breathing was all that got me through it. Still the neurologist refused to take it seriously and stated to the emergency room physicians the Parkinson's did not cause breathing problems.

A few months later I went into a malignant syndrome because of overinjestion of drugs to control my symptoms, not the disease. I was thrashing around uncontrolably, screaming for heip. The emergency room physicians were great. They finally, after watching me go through this for 19 hours, got a neurologist to come in to see me. I was put into a coma to give my body time to detoxify. During the 19 hours of waiting for the neurologist to come, my kidneys began to shut down because it was unable to handle the protein from my constant movements. They had to try 3 times to bring me out of the coma.

Afterwords the neurologist came to see me when I was moved to a regular room from ICU. Her diagnosis, Anxiety. She blamed me for not controlling myself and allowing myself to get upset and bringing the disease on myself. When I saw my regular neurologist for my next appointment, she also pulled out the anxiety diagnosis, but I was ready for her and brought several copies of studies proving the involvement of the autonomous system and papers written by Emergency room physicians of difficulty getting help from Neurological staff who refused to acknowledge symptoms as Parkinson's related.

When my neurologist attempted to refuse me the opportunity to have DBS, she told me no. She said based on her experience with patients, I fell into the category that would more than likely commit suicide after surgery. I told her she may have seen many patients, but she had no idea what or who I was. I refused to let her slot me as a type of patient, and make her see me. She said that she would allow me to have the surgery, but it was against her better judgement basically putting the responsibility for the outcome straight on me. I had the surgery and it has been a miracle for me. People who see me say they are amazed at how much better I am.

Lee, one suggestion. At your next appointment, ask the nurse to take your blood pressure both sitting and standing. If there is a big drop when you stand or you feel dizzy, you may be having autonomous problems, and others possible reasons should be ruled out before your neurologist can be convinced of this possibility.

Good Luck,
Vicky

Carey,
What can I say? After being diagnosed for ten years I have only just given up on the notion that what I have is not really PD. I had finally decided I was dilusional and of course had it. NOW THIS? Even if it is only a very slight change in diagnosis, it sounds like it means a release from the posibility of rapid decline over the next few years (which I have been expecting as retribution for the slow progression over the last ten.)

Honestly, as I read the piece I could feel the denial returning,(something I don't necessarily consider a bad thing.) By this evening I will be in full blown denial and dreaming of adventure vacations.

Thanks Carey, even though I don't exactly fit I taking it on anyway. At least there are possibilities.
Pam

I am so slow, I only just realized the original post is almost three years old. Carey does it still stand with you?

I think I'm going to adopt it anyway. I just love denial.

Thanks again anyway.

I was diagnosed with PD in November 1996 at 40 years of age. A resting tremor of my left hand and armr are really my only symptoms, I drag my left foot a bit too. I have had little progression in 14 years. I recently vsited Mayo Clinic in Rochester and was re-diagnosed with Benign tremulous Parkinson's disease. The only posts I can find are old, does anyone else share the diagnosis or know "indigogo" is still active in this blog? Curious!

Yes, Indigogo is around and I am sure she will respond!

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

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.

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.

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!

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)