The Reality of Amyotrophic Lateral Sclerosis – Guest Post by Kathy

Kathy’s guest post is the 41st post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Kathy!

My name is Kathy, and I am a 53-year-old woman living in Southwest Florida, USA. I have been married for 31 years and I have three wonderful sons.

My Story

I started experiencing weakness in my hands in May of 2018. I had my own decorating business and was working close to 16 hours a day, so I just assumed the weakness was from sheer exhaustion. But then I began having muscle fasciculations in my arms, and this caused concern, so I was sent to see a neurologist. Through process of elimination, doctors felt strongly that I had Motor Neurone Disease. It was not until January of 2019 that I was officially diagnosed with ALS (Amyotrophic Lateral Sclerosis).

Common Symptoms

ALS affects everyone differently, but the most common symptoms are muscle weakness, slurred speech, fasciculations, and difficulty breathing and swallowing. It is a progressive disease with no cure. Some ALS patients have bulbar onset, which impacts speech and breathing, while others have limb onset, which affects arms and legs. Some have both. I do not have any bulbar symptoms at this time.

How It Affects Me

A diagnosis of ALS is devastating because there is no cure and statistics indicate a life expectancy of 3-5 years once diagnosed. This disease has affected me in the sense that I have had to give up my business, I no longer drive, nor can I dress or feed myself. I can still walk with assistance, although my balance is questionable, and I fear falling. My entire life has changed, as has my family’s.

Learning To Adapt

My positive attitude is the number one thing that has kept me going. Of course, my family is a source of strength, and I do as much research as I can to hopefully beat the odds. There have been 43 reversals, and I want to be another one. In the interim, we have renovated our bathrooms to be handicap accessible, I have a powered wheelchair, and I use a rollator most days to get around.

Changing As A Person

The thing about ALS is it does not rob your mind or creativity. Thus, I still have all my thoughts, intentions, and energy. However, I just cannot act upon it. The one area where I would say I have changed is spiritually. This disease has made me more reflective on the meaning of life and not stressing so much about little things.

My Favourite Superhero

To be honest, my ideal hero has never been someone who has superpowers and puts on a cape to save humanity. Rather, it’s the real-life men and woman who put their own lives on the line to save others whether its soldiers, firemen, nurses, etc. Lately, my superhero has been my husband, because this disease impacts him as well, and he has been by my side loving and helping me every step of the way.

Thanks Kathy for sharing your story with my readers and me.

If you would like to stay up to date with Kathy, then you can find her on her blog, Grit & Grace in the face of ALS!

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