Lets Start From The Beginning

When diagnosed with a disease I was not familiar with, I began to read every book I could get my hands on, and I searched the internet to feel informed about what to expect as I moved forward. Prior to researching the only things I knew about my illness was Lou Gehrig, New York Yankees baseball player, the ice bucket challenge that captured the world and that it was not a good diagnosis to have. After completing my research, reading all those books and looking through websites with all the medical jargon, I still felt totally alone as if no one could truly understand what it was like to walk in my shoes. This was despite having a strong support system with family, friends and attending my first medical appointment at the ALS clinic. 

One thing the information grossly lacked was it didn't explain anything about what it was going to be like to truly live with ALS. You know the daily nitty-gritty stuff people don’t want to acknowledge or share because it is too personal?  Yes, the information did go over treatments and equipment and even told me about my death, but zilch about real life. That is why this blog will have nothing to do with medical jargon but will have everything to do with living aka dancing with a terminal disease, having disabilities, while still trying to maintain grace, a sense of humor, and finding purpose.  

I would like my readers to know that my symptoms started with what is called sporadic limb onset. I have right arm and shoulder weakness which has progressed to my left arm. I am unable to raise my arms up or out.  I currently have difficulty with hand dexterity which makes it difficult for me to grip and hold utensils. I typically can start my meal, but I usually need assistance to finish due to muscle weakness. My legs have some weakness, although I am able to walk small distances independently and use a rolling walker for longer distances. I am currently able to breathe, swallow, and talk on my own. 

I have been told by the medical professionals I have slow progression of this disease. ALS presents differently in each person, with some onsets such as bulbar, which can be fast progressing. As my disease progresses, I will continue to lose ability to move my muscles and remain independent.  I hope my readers will find my blogs useful and come along with me on this dancing journey.  Now let’s hit the dance floor!

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