Suffering from Primary Lateral Sclerosis (PLS)

Hello,

My name is Christine Komperda and I want to thank you for taking the time to read my story and possibly helping me going forward. I am 54 years old and a wife and mother. A couple of years ago I started having issues with my balance and walking. Years of doctor visits to try and determine what the issue was all the while my condition continued to deteriorate.

After seeing almost every kind of doctor the Neurologist at Northwestern have diagnosed me with Primary lateral sclerosis (PLS).

Primary lateral sclerosis (PLS) is a rare neuromuscular disease with slowly progressive weakness in voluntary muscle movement. PLS belongs to a group of disorders known as motor neuron diseases. PLS affects the upper motor neurons (also called corticospinal neurons) in the arms, legs, and face. It occurs when nerve cells in the motor regions of the cerebral cortex (the thin layer of cells covering the brain which is responsible for most high-level mental functions) gradually degenerate, causing movements to be slow and effortful. The disorder often affects the legs first, followed by the body, trunk, arms, and hands, and finally the bulbar muscles (muscles that control speech, swallowing, and chewing).

Symptoms include:

Weakness

• Muscle stiffness and spasticity

• Clumsiness

• Slowing of movement

• Problems with balance and speech

There is no cure

Over time this disease has affected my entire body. I slowly lost the use of my legs. Starting with slow walking and falling, to walking with walking sticks, to using a walker, and now I am in a wheel chair. I cannot stand from a sitting position on my own. I cannot get in bed or out of bed without major assistance. I have lost all motor skills in my hands and cannot use a pen to write or cut my own food. I cannot dress myself. I cannot use the wash room or shower on my own. Now my voice is being effected as it is getting harder to speak clearly. All these conditions will continue to deteriorate.

Health insurance has helped with the many doctor visits and the numerous prescriptions but does not cover items that will help my quality of life. Your donations will go towards items that will help me live the best possible life under these conditions. Items such as motorized wheel chair, scooter, hospital bed, type of chair lift to get in and out of the house, vehicle with a lift, all items not covered by insurance but will help me live the best possible life while battling this terrible disease.

I want to truly say Thank you for reading my story and for your possible donation.

Bless each and every one of you.

Christine