ALS Blogger Patty Blake Tells Her Story
If you are reading this, chances are you or someone you love is facing a diagnosis of amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease as it's more commonly known. First of all I want to assure you that you are not alone. All of the emotions flooding in right now are all appropriate and have been experienced to some degree by each of us affected by ALS.
My name is Patty and I was diagnosed with ALS in late summer 2012 at age 55. But my symptoms began much earlier. I have what is referred to as "limb onset" ALS. My first symptoms, which began slowly starting in late 2009 or early 2010, were stumbling and tripping due to a floppy right foot. The journey toward a diagnosis was long and there were a few wrong turns but in the end, all that was left on the table was ALS.
While we were first searching for answers, we kept telling ourselves it couldn't be ALS because all the cases we remembered hearing about moved very quickly. My case, on the other hand, seemed to be moving very slowly. So it couldn't be, right? As we eventually learned, every ALS case is unique. There are similarities, but the disease affects individuals in different ways.
Over the months that we were zeroing in on a diagnosis, I spent many hours on the Internet searching for information about various neurological disorders. You may have done the same. If so, then you may have discovered as I did that there are good sources of information AND not-so-good sources. I learned one has to be very careful to check information for accuracy by visiting reputable sites and being wary of sites that are trying to sell you something.
Almost everyone knows someone who knows someone who has (or had) ALS. Because of this experience they may consider themselves an expert on the subject. They mean well, I'm sure. But try to remember that each case is unique. Just because your sister's coworker's cousin's neighbor lived only a few months after his diagnosis doesn't mean the same will happen to you.
When my ALS diagnosis was confirmed it felt like a door slammed in my face. Months and months of testing were over. But I didn't like the answer. Grief, anger, hopelessness, and fear were just some of the emotions that washed over me. No one wants to hear that they have an incurable illness. But when you think about it, life itself is 100% fatal, right? I know that sounds a bit macabre but it’s true!
Now, here's the good news. As an ALS patient, you have access to resources that are going to help you with daily living. Your caregivers and families also have access to these resources. The problems that you will face have already been encountered by many others and solutions do exist. Never hesitate to ask for help. And of course, there is no such thing as dumb question!
The team at the UC San Diego ALS Clinic has been a tremendous source of support for me and for our family. These regular visits give us an opportunity to share concerns and ask questions. It is very reassuring to us to come to a place that is dedicated just to ALS. The team's experience with so many cases means that they understand completely what we are going through. And they are ready to help.
I highly recommend the ALS Association as a resource. Also, the Muscular Dystrophy Association is very involved in ALS research and support for those affected. Each of these organizations provides support groups which we have found to be our best source of encouragement, friendship, and problem-solving ideas. Some equipment is available through both ALSA and the MDA by way of their lending “closets.” Just ask.
And here's something I have learned: having ALS has allowed me to slow down and spend more time visiting one-on-one with friends both old and new. My priorities have changed somewhat in that I realize the value of relationships more than ever before. ALS may limit my activity but it can never take away the love of my family and friends and my relationships with them. My faith also has been strengthened.
Your life has taken an unexpected turn but you are still you. ALS is now part of your life but it does not define you. And as with every challenge that we face, just take this one day at a time.
Read more on Patty's blog.