Usernamed
Usernamed
Sex: M
Data Quality: 0 stars
PSP: 11 yrs
Type: Progressive supranuclear palsy (PSP / Steele Richardson Olszewski Syndrome)
Mood: Bad
Cognition: Moderate
Eye: Moderate
Head: severe
Arms: severe
Legs: severe
Tremors: mild
Balance: severe
Usernamed
Male, 59 years
North Miami Beach, FL
Primary Condition
PSP and 1 more
Type
Progressive supranuclear palsy (PSP / Steele Richardson Olszewski Syndrome)
First symptom
Sep 2000
Diagnosis
Nov 2005

About Usernamed

Hi! My name is Bruce. I live in North Miami Beach, FL. I was originally diagnosed with PD in 9/03 and, as is common, I was re-diagnosed with PSP in 11/05. I asked my doctor to do DBS surgery, and he then told me that he suspects that I have PSP, and thereby would not be a candidate for DBS. He had noticed that my eyes were whacky, and that I did not respond to the PD medication with the typical "ons and offs". As a matter of fact, i now no longer take any medication for my affliction, other than the typical blood pressure, cholesterol, anti-depressant, etc. drugs. Please see my long bio!!

Profile Activity
5076 Views
Member since: Nov 05, 2008 Last Login Sep 20, 2011

Other Conditions

  1. Dystonia
    First symptom
    ?
    Diagnosis
    ?

More About Usernamed

       I had worked for many years as an industrial appraiser.    As a result, I have traveled extensively around the United States, along with Canada and Mexico, visiting factories of all types.    I would write up detailed specs on all of the production and machine shop equipment, forklifts, computers, office furniture, etc. of the many auto and aviation sub-contractors that I visited.    I also did pharmaceutical manufacturers, chemical processing plants, and clothing manufacturers.    I even appraised a lox manufacturer in The Bronx, New York, a shrimp processor in a Louisiana bayou, and Stetson (Western) Hat manufacturer in Texas.    I would then return home to research the values of said equipment.    

    I grew up in NYC until I was 40 years old.   After meeting my wonderful wife, Faye, who is currently my caregiver, we moved to South Florida for about 8 years where we had our son Sam (now 14), then to Dallas for approx. 5 years, and back to FL for the past 2 years. 

    I am now 56 years old.    I dont speak.   My balance is way off to the point where I can barely walk.    I am at the beginning of swallowing problems.    I rue the day that my movement disorder specialist gave me the bad news that it was PSP as opposed to PD that I was experiencing.    PD is something I could have lived with literally, whereas, PSP seems to be my undoing.     That is not to make light of PD.    Yet it is known as the snowflake disease, where each and every person has varying symptoms, and varying degrees of affliction; many of those with PD able to live relatively full, long lives.     At the same time, there are those, possibly misdiagnosed, with PD who do suffer terribly.    I don't know the point of these ramblings other than my need to vent some of my anger and frustration with the fact that I must use a typewriter device by Dynavox to be able to communicate,  and have a young son who is unforgiving, and just doesn't understand!!!!