My First Laughter Episode

After last Wednesday my whole life turned upside down. I am 63 and told I was going to die of ALS. DON'T DRIVE YOUR CAR ANY MORE AND and DON'T LIVE ALONE. I had been active and driving all my life and in one 20 minute period my life turned upside down. That is the past. I am 8 days in and having fits of crying , today was different.

Tuesday nite, an ALS representative visited my son, who unexpectedly after 4 days in the hospital brought me to his home with his wife and 2 little girls. My Sister and 2 sons, and daughter-in law and I sat and listen to her discuss ALS. She was much more helpful than the Doctor who told me. This is going to be a log about receiving a death sentence and how I am dealing with it.

Yesterday, I went to a legal deposition and could not talk. I had my son read an opening statement. I was going to die and to order a wheel chair. I learned on Wednesday last Week. This Tuesday this week I learned I would soon be on a feed tube and ventilator. On Wednesday this week I went to the deposition, my son read the statement and I accepted a very small settlement for being in my friends car as a passenger and being hit by a large Utility Truck. The utility company gave me the small settlement. Ha! Ha! An insurance called me a nuisance and gave me nothing , my friends insurance company. My bills were $20,000 dollars. I had to let that go fast, so I could breathe. I was dying and have extensive medical bills and they both are big companies. I have cried hysterically for everyday since I heard I was dying and they called me a nuisance.

But after coming home after the deposition I slept for hours. In the middle of the night, which I had been getting up every night since Wednesday a week not being able to breathe and crying for hours, I could eat an "Eggo" and ate a little pudding . It is the first time in the last three years I could rest and breathe. I thought looking at my son's guest room, knowing this was going to impact my family, my grandchildren, my friends, my church family and then poof I would be a memory.

I saw a light. The first time I could breathe and eat and smile. I thought there are more people with ALS who experience these nights of fear and maybe we could look at this like "A Little Day in the Middle of the Night" I repeated it and wrote it down in word on my computer.


My Son had said your are feeling such immense feelings why don't you blog and get some of your emotions out. This morning I was home free for the first time in two weeks not to have scheduled any tests, legal battles appointments.

I ate, Stacy, my daughter-in-law and I made appointments and she said after we finished that we would go out to Costco's to try and find me something I would care to eat. We went to McDonald's and I got a grilled chicken wrap with no sauce and a drink. It took me an half hour to eat but I was telling funny stories the whole time. I had to take the chicken out and just try to swallow that.

Back tract a little, after the deposition my son Rich said, "Ellen said on Tuesday night, my Temporal Lobe was affected. My kids told me, I had so much emotion because everything hit me at once. I am lucky I could have died in one of the many car accidents I have had, in an instant. I did not. With all my complications and such immediacy, I could die anytime or get worse anytime. How much pressure is that . I ask God what do I do? He spoke and said turn it over.

• Do you know what temporal lobe ALS is? Your Emotions are affected
• By the time symptoms show 50% of your neurons are dead. I am gone, but have my memory and thank heaven, I have a sense of humor.
  

I am now going to tell you why I had to share right away.
Today at Bath and Beyond I had a task to do, something every one does to return something. The Temporal Lobe affects your executive function not your memory. I will call that my "EF", now, I have something others don't. Others have Senior Moments I have "EF's"

• Well when I was returning the Shower curtain, the man asked me why I was returning it. My "EF" took over. I wanted to say because, I am going to die and don't need it. Then, I started to laugh insensately. That was the start of over load. I could not stop laughing out loud. I could not breathe, I was choking and did not have the card, I used to buy the shower curtain. Laughing hysterically, I could not handle the rest and walked away to not embarrass Stacy or me. When I did that, everyone was asking me, was I OK and asking Stacy, Is she OK? She said, it is OK, because she knew about "EF". I came back and tried to find Stacy and she switched lane and I could find her. A lady in front of Stacy, walked out laughing. I saw Stacy and I went up to her while she was trying to finish the transaction. I knew what she was doing and the man said, here is your store credit and I burst out laughing. My thought was, what am I going to use it for now, Diapers. I laughed hysterically and had to leave the store and lean up against the truck, till Stacy got out. When we got in the truck ,I said to Stacy, I am sorry! She said, at least I am thankful you did not pee yourself.
• Well that held on for several miles laughing out of control. She drove through a drive thru Bank to initialize a bank card, I had just had replaced and we got afraid if my "EF" took over and I did not do the pin number correctly the bank would eat my card. Another "EF", Laughing hysterically so we left.
  
• We went to McDonald's and thought I better call my brain doctor because I might not get my sanity back. * Days of hysterical crying now 8 hours of hysterical laughing. I tried to talk while Stacy ordered in the drive thru.
  
• I said ,I need an appointment with the head doctor and it is an Emergency. I asked if the secretary heard my news and she said, yes. Then she left and came back and said, should I tell her more.
  
• I said, I have Temporal Lobe ALS and am having out of control emotional reactions. She gave me an appointment in a week and said, ' I could call in an emergency room or see my other doctors.
  
• I have no Doctors, who know about this yet. I just found out today, that my first 4 hour multi-disciplinary AlS appointment is on the 19 th of August, 8 Days away.
• I have an appointment with my Primary Care physician on Monday at 11:30 AM.

Remember back when I first wrote How I was told. Then what I have gone through since then. That "Little Day in the Middle of the Night " was my Blessing and I know for others with ALS I hope they can see it. After that Back to the "EF'S" I think I would rather have this laughter than the crying. Either way, I can not breathe but maybe I can share a smile to someone like that lady in Bed, Bath and Beyond who walked out laughing.

• I got one more one liner. Were going over a road I had been over 20 years ago and I named the road and said there was a prison over there but I think it is gone. She said there is a School there now. I said 20 years ago we were worried about prisoners breaking out now today we are worried about students breaking out. Hysterically laughing til we got home and set up this blog.

Now I can gt out some of these intense emotions into a blog. I have never been able to journal because it made me face things I could not. Now that life is in the balance I am sharing with the world. My kids say the world can answer now and you do not have to send 20 emails to what is happening. Everyone can just check the blog. It might be more than some can handle but it is what my family is really living.