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frank reyerse data base

Connecting HSP, PLS and ALS patient's world-wide

This Site

This site allows individuals diagnosed with Hereditary Spastic Paraplegia (HSP), Primary Lateral Sclerosis (PLS) or Amyotrophic Lateral Sclerosis (ALS) to connect and share experiences.

This project was originally conceived and constructed by Frank Reyerse who was diagnosed with PLS in the early 1990's. For 10 years this site was his passion and mission. Upon Frank's death, this data base has been maintained as a labor of love by Jim Campbell.

About HSP, PLS, and ALS

PLS and HSP are disorders of the upper motor nerves. These nerves originate in the motor cortex of the brain and extend down the spinal cord to the lower motor neurons. The lower motor neurons relay messages to the muscles, telling them to contract or relax. The condition affects the voluntary muscles, which includes the muscles of the legs, arms, speech, swallowing, and lungs. It does not include involuntary muscles such as the heart.

HSP and PLS can be referred to as primary upper motor neuron disorders because there is little, if any, lower motor neuron disease, which distinguishes HSP and PLS from ALS.

Symptoms

The symptoms experienced by an individual depend on the extent of the loss of motor neurons. Symptoms can feel like tightness, cramps, or twitching. The initial symptoms in HSP and most cases of PLS is progressive stiffness in the legs. Balance and foot scraping may initially be experienced. Patients will eventually be unable to walk or stand and will require a wheel chair. In some cases, PLS may also present itself as a bulbar disorder affecting jaw, throat, swallowing, and speech. Patients will eventually be unable to speak or swallow.

ALS patients may sometimes first feel weakness in a limb, such as tired limb when doing minor tasks such as washing or combing. Eventually a patient is unable to use any and all limbs. The disorder will lead to an inability to breathe.

Causes and Onset

The cause of PLS is primarily sporadic (no known cause). In approximately 10% of the cases PLS is hereditary. Typically, onset of PLS is usually in the fifth or sixth decade of life (ages: 50-60).

HSP is primarily an inherited disorder, although there are cases where no known hereditary history. There are at least 30 different genes that can cause or trigger HSP. Onset can be anywhere from early childhood to mid adult (ages: 10-45).

Although 10% of ALS cases are familiar, the remaining 90% of cases are sporadic (no known cause). There are documented cases of chemicals in the ground, food, and drinking water that have created hot spots for ALS. These are not the only known causes. Onset be at any time but primarily affects adults (ages: 35-65).

ALS is always fatal, usually within 4 years of onset of symptoms. Some patients can have the disorder for longer periods of time, including 10 or more years.

Support, Chat

PLS Support Group: http://groups.yahoo.com/group/PLS-FRIENDS
PLS News Group: http://groups.yahoo.com/group/PLSers-NEWS

HSP News and Discussion List: SPF - Email Support Groups

Medical Information at: http://sp-foundation.org

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Terms and Privacy

This data base is for the private use by individuals with PLS/HSP/ALS and their care givers. Any other use is illegal. All information collected on this site is private and is never shared.