Good afternoon, and thanks for this opportunity to tell you a little about myself, and how and what I do here at Lucent. My name is Joe Guzdziol, and I am 43 years old. I've been married for 10 years, and have a 7 year old daughter. I have been with Lucent for a little more then 5 years. I work in Global Technologies Realization, Mike Glorioso's department which is part of the Covergence Solutions Group. I currently serve in several capacities. My mainstay for the last 15 years has been interconnection design on circuit packs. I am also department webmaster, and have been doing website design for 5 years. I am also administrator for a product database, and am supposedly considered an Informix expert, mainly because enough people retired back in July that I'm all that's left (smile).
This is the first time I have given a talk about my disability, and actually had to do some research to prepare for it. Let me give you a little general information about it. It has been diagnosed as spastic paraparesis, uncomplicated type. It is known as a "process of elimination" diagnosis. In other words, if it's not polio, or MS, or muscular dystrophy, or cerebral palsy, datadatada, then it must be spastic paraparesis. It is very rare, and has many different forms and causes. I personally have never met anyone else with it, and it is largely unheard of even among disabled people. I myself was not diagnosed as having spastic paraparesis until I was 14 years old, even though it began to show up in me at "about" 4-1/2. See, even I'm not aware of when it started, it was so very gradual. Even at the age of 10, I was still able to play one-on-one basketball with my brother. The most common varieties of spastic paraparesis are genetic, but I am the only one in my family that is known to have ever had it, going back at least 3 generations.
But since most of the research is being done on the hereditary forms of it, that is the type that is most often referred to: Hereditary Spastic Paraparesis is a name used to represent a group of inherited degenerative spinal cord disorders characterized by a slow, gradual, progressive weakness and spasticity (stiffness) of the legs. HSP rarely results in complete loss of lower limb mobility, although mobility devices such as canes, walkers, crutches or wheelchairs may be necessary. In some patients, the symptoms continue to increase throughout their life. For others, symptoms may begin in early childhood, worsen for a few years, then level off after adolescence.
HSP may be classified into two major subtypes: "uncomplicated" or "complicated" HSP. In individuals with uncomplicated (or "pure") HSP, progressive spastic paraplegia occurs as an isolated, primary finding. In those with complicated HSP, additional neurologic abnormalities are present. Some individuals with uncomplicated HSP may develop muscle spasms and difficulties with bladder control. In those with complicated HSP, associated symptoms and findings may include visual and/or hearing impairment, mental retardation, impaired control of voluntary movements (ataxia), and/or other abnormalities.
It is important to note that the terms "spastic paraparesis" or "spastic paraplegia", when used by themselves without the designation of "familial" or "hereditary", refer to symptoms that may be caused by many reasons other than genetic (which is true in my case).
In my case, the doctors performed several tests, including a dye trace in my spine to exclude several of the spine-related causes. With no history of spastic paraparesis in my family, I apparently don't have the FSP/HSP type. My daughter will be 8 years old at the end of next month and is in perfect physical shape. The doctors never did narrow it down to a specific cause, but I have no doubt that the diagnosis is correct, since many of the symptoms unique to uncomplicated spastic paraparesis are evident in my medical history. These include:
Treatment may include medications, muscle stretching, range of motion exercises, or surgery for tendon release or to sever the nerve-muscle pathway.
I personally do not care for medications, and avoid them if at all possible. I experience a fair amount of pain in my joints on a daily basis, but I am so used to it, I don't even notice it. My usual approach is to ignore the pain as much as possible, and trying my best not to overdo it, which is not always easy (smile), given how active I am. If I overdo it, I just take some Tylenols. The most strenuous things I do on a regular basis are shoot pool and participate in praise team and choir at church, both of which I need to do a lot of standing for. But activities like these don't cause a lot of wear and tear, like extended walking does.
When I was younger I also went through muscle stretching and motion exercises, but my leg muscles continued to tighten up in spite of this. Another treatment I have experienced was surgery for tendon release. My last two surgeries at ages 14 and 15 were for this reason, the last of which unfortunately made my condition much worse. After each surgery, I was placed in a body cast from the middle of my back down to my toes, so the muscles would heal together completely stretched out. By the time I was taken out of the body cast, my muscles had atrophied to the point there was nothing left to work with. I also had a lot of nerve damage and scar tissue. Before that last surgery I was getting around with just a cane. After the surgery, I was in a wheelchair for 7 months before I recovered enough to get back on the crutches, and it took all my strength and desperation to do it. When the doctors started talking about performing still ANOTHER surgery on me, I absolutely refused to allow it, fearing I would never walk again. Mind you, this was back in 1974, many years before the Americans with Disabilities Act was probably even a dream, and the world was much less accessible back then. Facing life in a wheelchair was too scary a thought for me. There have been no new advances in medicine that would impact my condition, so I just go along and do the best I can.
I haven't needed much in the form of accomodations. I'm glad that where I currently am at South, my office is located close to the cafeteria and a washroom. I appreciate that all Lucent buildings are street-level accessible. My worst experiences have been with lengthy walks within Main and NSC, especially to interior buildings like buildings 1 and 2, and the Schacht Auditorium, since there are no entrances close to them. Currently plans are under way for my department to move to this very area in March, and I will have by then obtained the use of a scooter to get around on a day to day basis, with my trusty sticks along to give me as much flexibility as possible.Current Research
Most of the current research involves attempting to locate all of the (15 or more) genes that cause HSP, although at least one study in the United States is actively working on a cure.
Nerve growth factors are an area that shows possibilities for treatment of HSP. Since it appears that HSP does not cause the nerve cells themselves to die, but there is degeneration of the ends of the long axons. It may therefore be possible to use nerve growth factors to stimulate regrowth, or to halt or reduce the degeneration.
HSP Research is currently being funded by the following:
National Organization for Rare Disorders (NORD) http://www.rarediseases.org/
The National Institute of Neurological Disorders and Stroke (NINDS) http://www.ninds.nih.gov/
National Ataxia Foundation (NAF) http://www.ataxia.org/
Muscular Dystrophy Association (MDA) http://www.mdausa.org/
The Tom Wahlig Foundation (in Germany, info at http://www.fsp-info.de/)
Thank you for allowing me to come here and talk to you today about my disability, and I will be happy to answer any questions you might have for me, please don't be shy, it's ok, really! Thanks again.