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

This has been such an interesting thread that I have suggest PwP on the P.D.S forum read it.I hope nobody minds.

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!

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've never received an official dx as having Benign Tremulous Parkinsonism, but almost 3 years later, I still have not progressed much further. My toes cramp a little more, but I am taking less medication just because I'm lazy. I wonder if some of my symptoms might be side effects; I know I feel better when I'm physically active, but am lazy that way too. Depression and anxiety continue to plague me and are my greatest obstacles to having a high quality of life.

I'm just 3 years into the the PD journey but have not progressed at all that I can discern. I'm beginning to hopefully wonder if Benign Tremulous Parkinsonism may apply to me. I'm only taking Azilect and have done so since my dx in 2009. Is anyone aware of further research on the topic? Thanks!

Almost two years after this post, I can say much the same thing. Tremor is more dramatic in both hands, and my meds (carb/levo 25/100 and amantadine) wear off more quickly, but it remains the main symptom. I worry about dyskinesia, so keep the meds low. Depression/anxiety still troublesome.