by Patty Blake on Fri, 2015-06-26 04:41

So, sometimes I am NOT okay.

Patty Blake

And these down times often coincide with Tobii difficulties.

Or communication problems in general.

And lack of energy plays a part.

Despite sleeping well at night (with help from meds) I sometimes feel so very tired.

ALS? Depression? Both?

People seem to be amazed at my usually positive attitude. They realize, of course, that isn’t always the case. Naturally, there are down times.

Such was the case Friday. Sometimes despite all the little alignment adjustments, Tobii just will not cooperate. I was trying to type a short note. After fighting with Tobii for 10-15 minutes, all I had was the date and a few random letters and characters, stinging eyes, and a rising sense of panic.

And fatigue. Deep, bone-weary fatigue.

I spent most of the day watching TV and movies. After my little meltdown, of course. Alan and Deanna helped. The tears and wailing didn’t last long. I didn’t have the energy for more.


I really hate ALS.

In these blue times, or more precisely, after they pass, if I am paying attention, I notice signs from God that He loves me and is always with me. Even when I forget Him in the midst of my pity parties. Sometime last week, when I was feeling chipper and content, God prompted two friends on opposite sides of the country to send me a sweet card and an encouraging word. Both cards arrived Friday afternoon, exactly when they were needed. (Thank you, Jill and Sandy.) God is awesome.

So, today is better, praise God. Tobii is (mostly) behaving. In my continuing effort to keep it real around here I am sharing the not-so-nice times as well as the positive stuff. It is what it is, folks.

And sometimes having this disease makes me feel blue. I am so thankful that God patiently waits for me to notice the blessings right there, in the beautiful blue.

Love, Patty

This blog was posted originally on June 13, 2015.

Note: Visit to learn more about MDA's fight against ALS. The site offers powerful stories by people living with ALS, including Patty, as well as other helpful resources so you can get involved and help take action to end ALS today. And, be sure to visit MDA's ALS disease information center to learn more about ALS, its causes, signs and symptoms, research and more.

About the Author

Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.

MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy