Recently my grandmother was encouraged to get some tests because of a persistent cough. The doctor mentioned he thought she may have Parkinson’s like Guy’s dad was diagnosed with earlier this year. We were all upset by this possible diagnosis. My other fear was throat cancer from 50 years of living with a chain smoker. They ruled out cancer right away. The test earlier this week showed she did not have Parkinson’s. I think we were all breathing easier despite the test she then had scheduled for today. My mom sent an email this afternoon. She was diagnosed with ALS or Lou Gehrig disease. Well, that is worse then any of the things we had been afraid of. The prognosis is so grim. A typical case only has a 3-5 year life once the symptoms start. My mom pasted what she found out on the web today from some site.
This sentence really made me a bit mad. It was following a statement about how devistating such news brings to the person diagnosed and their family typically requiring time to grieve and mourn. “Be hopeful. Some people with amyotrophic lateral sclerosis live much longer than the three to five years typically associated with this condition. Some live 10 years or more. Keeping hope alive is vital for people with ALS.” What?!?!? We are supposed to be happy she may (if we are really lucky) get to keep her for 10 more years. My whole family thought she would outlive us all up until this year when my mom has noticed quite a few things that worried her. It doesn’t matter to me she is 89 years old. Up until this year she moved around and acted like someone in their 60’s. People were always shocked when they learned her age.
Here is a photo of Madison and I. She really is a serious child much of the time. But I always get a smile when I go into their room to get them out of their cribs. She also smiles for me when she is busy playing then sees me looking at her. She loves the knowledge that I am there for her and watching what she is doing. Blake, though, is the one that can get her to smile anytime and no matter what mood she is in as long as he doesn’t touch her. He invades her space, often painfully, so many times every day she can’t stand to have him touch her about 50% of the time. On the other side of this she always has to have him within sight. ALWAYS. The other night we had Blake in our room with us, because he was having a rough night with leg cramps again. We all fell asleep only to have Madison wake Guy up screaming. He went in to calm her down. She refused. Then he thought to come get Blake to put him in his crib. As soon as Blake was back in his crib next to hers she calmed down going right back to sleep. Guy thought it was hilariously cute the next morning.
My birthday was great. Thanks again to everyone who so nicely wished me to have a happy day! Happy Birthday again to all my birthday twins Eric, Tyler & Elaine! You guys all have a sweet birthday.
Since writing the message about my grandma we talked on the phone. She really is amazing. I know this will be so hard for her especially with her lack of religious beliefs. She asked how I am doing first, then completely agreed with me it was a crappy day. She said she will not dwell on it. She feels whatever happens will happen so why worry. The doctor today was very nice to her and asked a lot of questions to the other doctor/staff (not sure who) about ALS. She didn’t offer much hope letting her know she could die in two months or live much longer. My mom said she’s had some of the symptoms for at least a year. There is no cure. All I know right now is how grateful I am to have her in my life and for our trip scheduled to see the family in October.