Byline: Gloria Hevener
[Editor’s note: The NFOSD would like to thank Gloria for sharing her story. We have posted a few questions for our readers to consider at the bottom this article. We welcome your thoughtful comments and reserve the right to moderate them as needed.]
My name is Gloria Hevener. I am 76 years old with two daughters, a son, four grandchildren and one great grandchild. My last job was a Program Manager in Network Operations at Sprint. I loved my work and luckily, as a result of my job at Sprint, I am very technology savvy and can use my computer and iPad to my advantage. My husband and I did lots of traveling during our first years of retirement – nearly around the world.
In October, 2013, my daughters told me I was slurring my words. I didn’t notice it at all. However during 2013 I had problems with my sinuses and I cleared my throat all the time. My doctor said to take Zyrtec (Allertec) and gave me nasal sprays. This medicine did not help but I continued taking it hoping at some point these problems would go away. When I saw an ENT, he didn’t offer much to help me. He diagnosed me with a form of GERD and put me on an appropriate diet. After numerous visits to the hospital for various symptoms I took almost every test imaginable and all came back normal: stroke, heart, brain, etc. After three months and no answers both my internist and ENT referred me to a neurologist. I made an appointment with a neurologist at a local hospital and he checked my reflexes which he said were overactive. He wanted to see me in three months.
In the meantime I got tired of waiting for a diagnosis. My children suggested I go to the Kansas University Neuro Muscular Clinic for further evaluation in April, 2014. They performed an EMG and diagnosed me with both lower and upper neuron disease; hence, Bulbar Onset ALS. For a second opinion I went to Massachusetts General in Boston. They didn’t dispute it. I couldn’t believe it at my old age of 76. I thought this disease affected younger people, not an old person like me.
It is now July, 2014 and I have trouble swallowing and can hardly speak. I use an iPad to speak with an application called Speakit. I have difficulty swallowing breads, thin liquids, dairy products, and foods of varying texture. Breads become doughy and I have difficulty coordinating my tongue to move the bread to swallow. Thin liquids and dairy products make me choke because of excess mucus. I can get along with foods with the same texture, but mixing textures like soup with vegetables in it causes me difficulty. I use unsweetened applesauce to swallow my pills. I find myself constantly clearing my throat and I know it must bother others as much as it bothers me. I believe I will soon need a peg tube to make sure I get enough water and liquids because swallowing is so difficult. My doctor has prescribed Riluzole (twice daily) and Nuedexta (twice daily). I am getting more feeble and shaky by the day but can still walk. I use a walker sometimes to stabilize me. I don’t know where this disease will take me but I’m a fighter and will continue to fight. I am looking into a couple of clinical trials that I hope will accept bulbar and older patients.
I must praise the ALS organization for all their help and information given to me. They are wonderful advocates for ALS patients.
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Food for thought is providing comment posts
How does your experience compare with Gloria’s?
What is one thing you learned from Gloria that you could apply to your own situation?
If you’ve experienced a similar situation, what helped you cope with your experience?