I do not have idiopathic Parkinson's disease

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NEUROLOGY 2004;62:1224-1226
© 2004 American Academy of Neurology

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Brief Communications

Olfaction differentiates parkin disease from early-onset parkinsonism and Parkinson disease
N. L. Khan, MD MRCP, R. Katzenschlager, MD, H. Watt, MSc, K. P. Bhatia, MD FRCP, N. W. Wood, MD PhD, FRCP, N. Quinn, MD FRCP and A. J. Lees, MD FRCP
From the Department of Molecular Neurosciences (Drs. Khan, Wood, and Lees) and Sobell Department of Motor Neuroscience and Movement Disorders (Drs. Bhatia and Quinn), Institute of Neurology, Reta Lila Weston Institute of Neurological Studies (Drs. Katzenschlager and Lees), Royal Free Hospital and University College Medical School, and Department of Statistics (H. Watt), London School of Hygiene and Tropical Medicine, University College London, UK.

Address correspondence and reprint requests to Dr. A.J. Lees, Reta Lila Weston Institute of Neurological Studies, Royal Free Hospital and University College Medical School, Windeyer Bldg., 46 Cleveland St., London W1P 6DB, UK; e-mail: a.lees@ion.ucl.ac.uk

The authors studied whether olfactory dysfunction is present in parkin disease using the University of Pennsylvania Smell Identification Test (UPSIT). The mean UPSIT score in parkin patients was 27.3 (95% CI 24.4 to 30.2). This did not differ from the normal group mean of 29.4 (95% CI 28.0 to 30.7; p = 0.22) but was higher than the Parkinson disease group (mean 14.3; 95% CI 12.2 to 19.5; p < 0.0001) and the parkin-negative group (mean 17.1; 95% CI 14.8 to 16.3; p < 0.0001) values. Parkin disease may be a distinct and separate entity from Parkinson disease.


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I have Parkin disease.

Also, in the journal, "Brain," April 24, 2002, The article name, "Progression of nigrostriatal dysfuntion in a Parkin kindred: an [F]dopa PET and clinical study," London, UK.

The Introduction reads:

"Autosomal recessive juvenile parkinsonism is a distinct clinical and genetic entity first described by Japan in 1973. It is characterized by dystonia at onset, hyperreflexia, early complications from levodopa treatment (in contrast to dopa-repsonsive dystonia) and slow progression.

Neuropathology of Parkin cases is limited but, in cases that have been reported, there was a severe and generalized loss of dopaminergic neurones in the substantia nigra pars compacta without Lewy body inclusions, implying that parkin disease is a pathological entity separate from idiopaathic Parkinson's disease with overlapping clinical features."

Vicky

I sometimes have episodes where I can hear people talk and see their mouths move, but I can't process what they are saying. It's a little like an out-of-body type experience. It's like something is disconnected--like the part that processes communication just stops working for a while. Usually it lasts for a minute or two. Sometimes it has lasted maybe about twenty minutes.

I don't know if it's related to PD, but it sometimes coincides with an increase in other symptoms. I haven't talked to my neurologist or other doctors about this yet. I'm afraid they'll think I'm psychotic.

Karl

Hi Karl,
Did the watching people talk without hearing start after you commenced anti parkinson medication?
Agonist drugs gave me both auditory and visual hallucinations plus a bit of paranoia right from the early days of taking them, bit too much of a coincidence I think!
Anyway, just a thought.
Regards,
Lee

11 years ago I had sudden hearing loss in my right ear.5 years ago dx with pd. My ear doctor said the hearing loss could be caused by a viral infection. Amantadine ,an antiviral agent helps some pd patients. I wonder if some of the people with PD have it caused by a virus.

I don't recall very well what drugs I was on when I first noticed it about a year ago. It occurred just a few days ago. I am now on sinemet 24 hours a day with klonopin and trazadone to help me sleep. These days, it doesn't seem as bad or does it occur as often. It's a mystery to me.

I, too, have difficulty hearing although I was given a very, very thorough exam. Even so, my ear pops occasionally and it's like ... ah ... see I DO have something plugged up!

I'm with Karl .. it's funny how much I keep to myself, worried that others will think I'm psychotic. I'm both saddened and glad to hear that I'm not the only one.

Thanks, Karl ... you made my day and didn't even know it!

Terri

Terri: I think one of the best things about this forum is to be able to learn from others who are also facing difficult issues. I've had the "Oh, I'm not the only one!" experience many times since I joined. For me, for example, the discussions of insomnia and stress have really helped. Now, when I see stress coming my way, I head the other direction. I've felt much better since I actively started controlling or avoiding stressors in my life.

Karl,

I am 100% convinced that stress exasperates my condition horribly. I'm lucky in that I don't have to work. I quit my last job which I positively loved (working for a non-denominational Christian youth organization). It was a 20 hour a week job but, because I become so involved in it ... and love teenagers more than most will ever understand ... I took a lot of work home with me. Trying to juggle that, with my Parkinson's and with three kids in college, was simply more than I could handle.

So now I substitute teach at the high school. I can pick and choose which schools I'll teach, which subjects, which grades (in case you're not like me and like high school kids!) which days, and how often. They honestly don't care if I teach one day a year, or every day of the week. It's amazing how many retirees there are. I'm also paid at least decent wages ... $70.00 a day and that's in the midwest (Houston, TX) which is considerably cheaper to live than the east or west coasts.

So now ... lightening bolt! .... I think I'll post another thread so that others know it's a viable option.

But getting back on topic ...

I honestly can't adequately express what this site did for me ... especially when first diagnosed. It was my rock and was the only thing, really, which helped me keep my sanity. Now, four years later, I don't need it "quite" as much ... but when I do, you're here for me and have not once let me down. Like you, I can ask and seek questions and answers. Nothing is too small, too embarrassing, or too silly of a question to ask.

Terri