ALS at 21 years old!
Heather Bridges
Diagnosed in July 1997
At Vanderbilt Hospital
Nashville, TN
Hope is hearing the melody of the future.
Faith is to dance it.
heatherals6@aol.com
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MY ALS
ALS came into my life at age 21. The diagnosis turned my world up side down. I was only 21 years old and given 2 to 5 years to live. Well, I passed that time limit, its been 9 years now. I am not dying with ALS, I am living with ALS! I was a full-time employee, paying taxes and paying bills just like you. I didn't ask for ALS nor would I wish it on anyone. ALS could happen at any age to anyone. It took a year and a half plus a lawyer to get my SS benefits, at that time I got $662.00 a month. During the long wait my husband and I had to file bankrupt, lost our home, 2 new cars and our pride! Nine years of adapting to all the changes that comes with the disease progession. Now 30 years old confined to a wheelchair, I use a speaking device, feeding tube, trach & on a ventilator at night. ALS has taken away the ablity to walk, talk, write, drive and things we all take for granite, when its taken away you realize how important your health is. If you think of everything you do in a days time (brush your teeth, fix hair, bathe, hold a cup & drink, answer the phone, cook, even turning the tv channel)People with ALS have been robbed of these simple things. I was fortunate to become acquainted with The ALS Association and all the wonderful services they offer. The ALS Association has done wonderful things for me such as helping with the cost of remodeling the shower, now I can actually take a real shower! Below is information about ALS. Everyone is different, the "facts" are not always true. ALS INFORMATION ALS stands for Amyotrophic Lateral Sclerosis which is also known as Motor Neuron Disease and Lou Gehrig's Disease. In a nutshell, ALS is described as a fatal, incurable neurological disorder. The disease first gained national attention when the great baseball player, Lou Gehrig, died of the disease in 1941. Lacking funding, research has been too little and too slow compared to the research of other diseases. ALS has been described as the most devastating of all the neurological disorders; it can strike anyone, anytime, regardless of race, financial status, or ethnic background. Although ALS research has increased in the last five years, there is much more to be done. OUR VOICES MUST BE HEARD! ALS is an incurable fatal neuromuscular disease characterized by progressive muscle weakness resulting in paralysis.The incidence of ALS is about two per 100,000. The prevalence of ALS is about eight per 100,000. In the USA approximately 30,000 people have ALS. There are about 5,000 new cases per year, or 15 per day. Symptoms of ALS include stiffness (spasticity), muscle twitching (fasciculations), muscle shaking (clonus), muscle weakness and muscle shrinking (atrophy). 50% of ALS patients die within 18 months after diagnosis. Only 20% survive 5 years and 10% live longer than 10 years. ALS patients on ventilators may live for many years. ALS occurs in both sexes and all races. Men are much more likely to get ALS than women. Older people are more likely to get ALS than younger people. ALS does not affect the mind or the senses. Bowl and bladder control remains intact as does sexual function. The diagnosis of ALS may take several months because early symptoms may be similar to other neuromuscular diseases. Diagnostic tests include MRI (magnetic resonance imaging), EMG (electromyogram), muscle biopsy, and blood tests. There is only one FDA approved drug, Rilutek, to slow the progression of the disease. There are a number of other medications to help relieve symptoms of ALS. The average age of ALS onset is 55. ALS can affect people at any age, and cases have been found in persons as young as 12 and as old as 98. At least 10% of ALS cases are hereditary. These are called familial ALS. The other 90% of ALS cases have no familial link, and they are called sporadic ALS. The cause of ALS is unknown. Researchers do know that an excess of a neurotransmitter called glutamate clogs the synapses of motor nerve cells preventing transmission of neural impulses to muscles. Many new research studies are focusing on curing ALS. There has been more ALS research in the past five years than in the prior 150 years. |