ALS Diagnosis

Have you ever wondered how you would react if you were told you are going to die or were given a diagnosis that is almost certainly terminal.  I don't think I had the reaction I would have predicted.  I was shocked, questioned whether it could be something else, was he sure?  Then I tried not to cry.  I looked at Kenny and he was in tears trying to hold it together.  I was on the examining table and he was in a chair that seemed to be a mile away.  This cannot be happening. 
My doctor proceeded to tell us about his multidisciplinary clinic and how all of my care would take place there.  He spoke of speech therapy not to regain my speech but to teach me how to effectively swallow so I don't aspirate and get pneumonia.  He says that is very critical in someone who has ALS.  He then told us how we will be proactive in getting speech aides in place before I lose my ability to speak completely.  Everything from now on is all about preparation for what we know is coming.  At the first sign of losing weight they will place a a PEG feeding tube before you lose your ability to swallow. 
I have to say it was a lot to take in.  Nothing like I had ever imagined.  The doctor left the room to get his RN coordinator for me to meet and Kenny and I stood at the big window in the exam room.  We are on the seventh floor looking down at the people walking about.  There was a "Seasons Greetings" sign all lit up on the side of the hospital.  Kenny held me and we stood in silence.  We tried to catch our breath and hold it together.  Like we were we expected to?  It is really crazy how you try to be strong because you don't want to appear be weak.
It has been one month since I received the diagnosis.  In that time we have had so much happen in our little family.  My first grandchild was born at 35 weeks gestation.  My daughter went through so much with her pregnancy.  She was on bedrest for most of it.  Then she is told her baby isn't growing and he will have to be born early to prevent him from getting really sick.  At 9 days old he spent his first Christmas in the NICU.  After thirteen days in the NICU he was released and was able to be home for the New Year.  We are so very grateful that our little baby was not sick just young.  He is so very precious and has been a great diversion from my own agenda.

Nana and Papa

My daughter is in the hospital in labor with my first grandbaby.  What a wonderful feeling to know that a new life is coming into our lives.  I already love baby Ryan so much.  The doctors are concerned that he isn't thriving in the womb and would do better if he was delivered early.  At 35 weeks he is measuring about 4 pounds.  They say he is close to a month behind in growth.  I am trusting that this little guy is going to be a Samson in strength.  He is so active in the womb and has a very strong kick.  Watching my daughter go through this process has been hard.  Her pregnancy has been anything but enjoyable.

Medical Leave

It was three months ago today that I took my last phone call at work.  My speech was so bad that the patient couldn't understand a single thing I was saying.  I texted my husband to come get me.  We went directly to my primary care doctor and I was put on medical leave.  That was the first day that I had to truly admit I wasn't getting better actually, I was getting worse and rapidly. 

Hope for Today

Complicated Dysarthria and Dysphagia

I have been waiting a long time for today to finally get here.  I will be going to Barrow Neurological Institute to be evaluated for my unintelligible speech.  I am both hopeful and scared.  Scared that I won't get any answers or that the answer is something I don't want to hear.  Hopeful that they will say, "Oh you have.... and here is a pill or we can do this procedure and you will regain full use of your voice".  For the most part I have had an amazing attitude and have kept my spirits up.  From time to time I am overcome with sadness of my loss to express myself but I have my little pity party and then pull up my boot straps and have a good laugh at myself. 
I had a videostrobe done at the hospital a few weeks ago that showed all my problems are Neuro related.  Nothing from my nostrils down to my vocal cords are working properly.  Not only is my speech affected but swallowing and breathing also.  Apparently they are all muscles that are controlled by the brain.  My research has not given me the best news.  I know you should never diagnose yourself from information you find on the computer but I have not had much luck with the nine doctors I have seen.
My husband has been so supportive and caring.  He must be just as scared as I am.  He will be by my side today.  He has become my voice.  If I can't get the words out, or can't be understood all I have to do is look at him and he says it for me.  After almost 28 years of marriage you get to where you can finish each others sentences.  He always knows exactly what I am going to say.  He also is the one that always understands me even when my speech is at it's worst.  My interpretor, my love.  He is such a kind soul.  A true gift from God. 
Today I might have answers.  More likely I will have more tests.  I hope and pray we are finally on the path to getting answers and solutions to what has become my silent nightmare.