Hello,

     It's been a while since I have added a post.  On Thursday, March 11, 2021, my sweet sister Nancy, passed away.  It was so surreal.  Mark, Tammy, Laura, and I were all around her.  It was hard letting her go, but it was time.  Life will never be the same without her, but we will never forget her.  We are taking it one day at a time.  This is all that we can do. 

One Day At A Time

Hello,

     So much is going on in the world today with this COVID-19.   It amazes me how some people act about wearing a mask.  They complain about their rights being taken away.  I don't understand that comment at all.  We have speed limits for driving, age limits for drinking, voting, etc.  My new saying is, "If wearing a mask is the worst thing that happens to you, I feel sorry for you."  To me, these types of people are just plain selfish.  This is a very dangerous illness and I have to be especially careful with Nancy.  It is very important that she stays healthy.  We need to remember that it's just being respectful to one another.  Nancy, Laura, and I take ALS, this horrible disease, one day at a time.  Some days it's easy for Nancy, Laura, and I to smile.  Other days, it easy for us to be mad, angry, and even cry.  I wish someone would find a cure for ALS.  So, when I hear people complain about wearing a mask, I just shake my head.  They could have ALS and really have their rights taken away.  I am grateful for every day that I have with her.  Life is so precious and we should all remember that it's not all about us.  It should be thinking about how our actions affect those around us.  

     Thank you for listening.

Good night,

Anita         

Fighting Spirit

     My sister is a strong woman and  I am very proud of the fighting spirit she has.  I love her so much and I hate seeing her this way.  Before Nancy got diagnosed with ALS, she was a very active person.  Her beginning symptoms were trouble swallowing, weakness in her right arm, and talking nasally.  Laura, her, and I would do things together sometimes like eating out, going to the movies, shopping, going on trips, etc.  To see her this way now just seems so surreal to me.  I want you to close your eyes and imagine for just a minute, that one day your whole world changes for you.  You use to be able to walk from your house to your car, walk from your car to the store, then, one day walking got harder.  You started leaning on people to help you walk, next came a walker, and finally, a wheelchair.  Before all of this, you could do anything you wanted just like most people.  How would you feel?  I will tell you how I would feel.  I would be extremely mad!  I am sure I would say, "Why me?"  I might even get mad at God and the whole world.  My sister though has kept a great attitude despite all that she has gone through.  I would say that this is due to her faith in God.  I try not to complain about trivial things that really aren't that important because compared to my sister, I have a good life.  I will continue to share with you what it's like having a family member with ALS, a terrible disease.  It's almost like a thief in the night.  You don't see it coming and it robs you of your independence.

     Thank you for listening.

   

May Is ALS Awareness Month

     Happy May 1st.  May is ALS awareness month.  It has been 80+ years and there is still no cure.  The thought of this just blows my mind.  With all this modern technology, how come no one has found a cure?  This makes me sad because I really want there to be a cure for ALS.  Nancy always says that she wants a cure too.   Ellen DeGeneres had a fireman on her show that recently got married and then found out that he had ALS. He went to Washington with his wife and they talked to congressmen and explained to them that they needed to hurry up and release these trial studies for people who have ALS.  I know that if they had a family member with this disease, they would do everything possible to help find a cure.
     As we go through the month of May, I ask you that you remember those fighting this battle against ALS and keep them in your prayers.  Thank you. 

     I love it when Nancy laughs at us.  She has an eye-gaze computer that allows her to talk.  It is really a cool invention.  If we act silly or something is funny on TV,  Nancy will say, "Ha Ha."  No, it's not the same as hearing her voice, but it's nice to know what she is thinking.  I like the fact that it allows us the ability to be able to communicate with her.

     Nancy is allowed to eat some things.  She has had a milkshake, some ice-cream, a little sprite, and some mashed potatoes. No, she does not have big quantities, but just enough to make her happy.  When she enjoys these things, it brings a big smile to her face and it just warms my heart.  I like the fact that every once in a while, she can have something that she is craving.

     ALS is a terrible disease and to let her have a little bit of happiness, a little bit of pleasure for herself, is definitely well deserved! 

   

     My sweet sister was diagnosed with ALS on June 4, 2019. This news was devastating to our family. It all seemed like a bad dream, but unfortunately, it was our new reality now. It's bad enough to hear that someone you love has ALS, but it's even worse watching them go through it. I am going to share my thoughts and feelings with you as we go through this new journey. 
     I wish there was a cure for this horrible disease.  My sister was a very independent person and this disease has taken her independence from her.  Just imagine that you can no longer talk, walk, bath yourself, go to the restroom, fix your hair, put on your make-up, etc.  This is her new reality and it's not fair.  It makes you realize how blessed you are and all the things that we take for granted.  We really have no room to complain.
     Her best friend, Laura, and I take care of Nancy and we are happy to do so.  Laura misses her best friend and I miss my sister.  Yes, she is still alive, but we can't do the things with her that we use to.  We take it one day at a time and we enjoy her and the memories that we share now.  This is our new journey now.