Christmas 2008

Well Christmas was wonderful. On the Sunday before, Pat and Beth had a Christmas Party at their house in Valley Center. It was great. Pat and I drank Seagrams Seven, and the Jack Daniels on the rocks. Poor old Pat passed out. I didn't feel anything. Except I was having a good time. The grandkids were their, and they had lots of people to play with. AJ was around me all the time. I gave her my camera, and she took a lot of pictures. She is so cool.

Christmas Eve, Rick and Eileen, Peter and Leslie went to mass with Atring and I at the Miramar Airmen's Chapel. It was a good mass, and then we came home, drank bourbon, opened presents. and had a great time. Peter and Leslie left about 2 am to go back to Los Angeles..they plan to see Leslie's parents Christmas Day. Tito was unable to make it. He said he was spending Christmas Eve with his sons.
Nathan was unable to make it Christmas Eve because he had to work, but they did show up on Chritmas Day. Driving in the rain from LA, Nathan and Tenisha arrived and we had a great time talking...

Later in the evening Rick took all of us to the movie. We saw "Marley and Me."
They were all bugging me after the movie asking "Did you cry?" Of course I did, (yet another curse of ALS).
But despite that we had a wonderful time. The best part of Christmas has been and always will be the fact that all my sons come home to see Atring and I. That is what I look forward to the most.
I love those boys so much!

TwoThings

On the Monday before Thanksgiving my wife and I went to the Lady of Mount Carmel Catholic Church. We attended a special Mass being held by Father Fernando Suarez. He is a great Filipino priest who has the ability through Jesus to heal people. I am not saying he heals everybody, but I have seen and heard about his power. He cautions all that he is not the healer but only the conduit, that the healing comes from Jesus Christ to him. Nevertheless the Mass was good, he gave a great homily. And afterward everyone gathered so he might touch or pray over us, especially those with afflictions. I did, he touched me, but I felt no different. I still had ALS. But I did come away with a feeling that I am not so bad off as others. I pray to God daily to help me deal with my fate, but I know that God will do what he wants with me. That is OK with me. I want to post the prayer Father Fernando gave me.

Mary Mother of the Poor
Charitable Organization

Prayer For Healing
Lord, look upon me with eyes of mercy
May your Healing Spirit rest upon me.
It is through your power that I was created,
since you created me from nothing
You certainly recreated me.
Fill me with the healing power of Your Spirit
May your lifegiving powers flow into my every cell
of my body and into the depths of my soul.
Mend what is broken.
Cast out anything that should not be within me
Rebuild my brokeness
Restore my strength for service in Your Kingdom
Touch my mind with Your Wisdom
That my mouth may always proclaim Your praise.
Teach me to reach out to You in my need and help
me to lead others to You by my example.
Bring me health in body and spirit that I may serve
You with all my strength. AMEN


Thanksgiving was fantastic. All four of the boys were there and my two grandsons were also there. We went to Rick and Eileen's apartment. Everyone pitched in and made a fantastic dinner. It was all so delicious. I have a hard time eating, but I did manage to eat some food. The food and the family always makes this a very special holiday for me. After dinner we watched some football on TV, and then Atring and I went home. After a while, Peter and I sat down at the table and we had a great discussion. We talked about politics, sports, life in general, work, and many more subjects, but not once did we bring up ALS. I was frantically writing on the white board Leslie had gotten me( I have a hard time speaking intelligibly now).
What we did was not remarkable in any way, except it is the first time someone took time to talk to me about normal stuff and make me feel normal. I thank Peter for that. But I want more of that. The hardest part of this disease is it robs you of your abilities and you see and feel it happening. I am so conscious of the fact that I am losing ability to do the must mundane of things.
So the fact that Peter treated me so normal was pretty great.
Have a great day everyone...I will also.

Frustration

Well today I have been more frustrated than ever. I find that I am losing control of my hands...that is there is no tactile feeling as I have an extremely hard time even buttoning my shirt or zipping my pants. I also have no strength left, as I found out when I tried to turn the car keys in the ignition and could not do it.
When I am sitting on the floor, I find it extremely hard to get up.
When I walk I use a cane and walk so slow...my right leg is almost inoperable.

Though I do get frustrated, I get so upset with myself...knowing the most mundane tasks that I used to perform are exceedingly difficult. But if I cannot do it, I ask my wife for assistance. And she is there to help.

I remember being so independent, even when I was young..telling my beloved Mother
"I can do it, Mommy, I can." Now I am not so sure.

I rearranged my room today, something that is hard but not very taxing as long as you plan ahead. I did that, but found out I did not have the strength to plug a electrical cord into an outlet. It was so frustrating. My son, Rick came over and we had the whole job done in less than 15 minutes.

Oh well..
I thank God for my life and my lovely wife and wonderful sons. And the ability to wake up each day enjoy his beautiful world. I am thankful I live in the best country in the world. Freedom abounds, and I can say I am responsible for my own life.
Have a wonderful day...until next time.

ALS Walk

The ALS Walk to D'Feet Lou Gehrig's Disease took place yesterday Oct 19, 2008 at Mission Bay D'Anza Cove. It was terrific. A lot of people showed up, and I had about 21 people on my walk team "Chuck's Volunteers." It was a terrific 3K walk... I walked as much as I could, and rode a wheelchair the other time. My team was very supportive,and I think they had a good time also. Rick and Peter did a tremendous job of helping me raise money for the cause. The twins, Kaycie and Kellie were there, as well as Amy and her family, Norvell, Virgie and her husband, Irene, Rick and Eileen and his coworkers, Peter and Leslie and Beth and Pat. It was truly tremendous. I was tired but so very happy. Atring kept telling me to conserve my strength. But why not use it now in an activity I truly enjoy.
Thanks to all. A truly memorable event.

Helpless

Atring and I took the train from San Diego to LA on Thursday. We had a good time. A lot more relaxing than driving the car in LA traffic. But it was riding the train that I realized some things. I am so afraid of being dependent and a burden on others. Atring is always feeding me via the tube, and looking after me. I am loosing my ability to walk slowly but surely, and I am loosing the tactile feeling in my hands slowly. I am increasingly unable to eat...every bite is an adventure. I love the taste of the food, but getting it down without choking is very difficult.

I do not want to be helpless... I have been so independent my whole life. Doing what I want to do, being the one who was there to help others. Now...I am unable though very willing to do so. We go to church every Sunday, and I sit there and pray as always for my family and friends....bu now I also ask for strength to get me through this ordeal.

On a happy note, while I was at Pete's place, Nathan came over and prepared a fantastic dinner of pork chops and sauerkraut, garlic mashed potatoes, and fried squash. Simply delicious. He is a great chef!

Got the Peg

Atring took me to the doctor today to have a Peg inserted in my stomach. To say I was filled with trepidation is an understatement. But the hospital was very professional, and the doctor was good. I was out like a light...the surgery took about 15-20 minutes, and I was home before you know it. I am sore, but that is to be expected. I definitely recommend it to people who are not sure what to do. It isn't that bad, and it can only help you.
I read a lot of emails from other ALS patients, and some are against getting the Peg or the Vent. I am not sure why. But I know I want to live as long as possible and enjoy my wonderful family...avoid being a burden...and living in the beautiful world.
Thanks for reading...and when you get a chance....Tell Atring what a wonderful person she is..She really Is....

How I feel

Today I go to the doctor to get a follow up on my Pneumonia. Atring insisted. I honestly do not know what would happen to me if it wasn't for her. She is the very best!!!
I feel so helpless sometimes. I cannot walk fast. I remember how people use to run to catch up with me. Now I can walk, but I feel the weakness in my legs, and use the cane to keep my balance, mostly. But the inability to talk intelligibly is the greatest drawback. I have a lot to say, and I am not stupid. The tendency for a person who hears one who cannot talk well is to shine him on. Trust me, I get so frustrated when I try to talk...and even the whiteboard I use does not convey the emotion I want...or the concern....or the thankfulness.

The other big problem...not so bad, but embarrassing, The laughing and crying. With ALS you somehow lose the ability to control your laugh or crying...your emotions. I find myself smiling at things that are very serious. And by the same token I find myself crying at the smallest heart rendering scene or thought. Oh well. So far I have kept that out of the public view.

Well,as I used to say years ago..I keep on trucking!!

Thai and Tracy

Thai and Tracy came on Saturday to visit Atring and I. They brought their two sons Anthony (6 yrs) and Andy (2 Yrs). Both of the kids are great!! Thai told me they were shocked when they heard I had ALS. They said they didn't know what it was, but they looked it up on the internet.
I tried to tell them how I felt, but my voice has been declining rapidly for the last month, and they had a hard time understanding me. I treasured their visit. They both worked for me..or shall I say, we worked together at Qualcomm/Kyocera. Thai was the best technician I had ever me. He was very quick troubleshooter, and very accurate. I valued having him on my team. Tracy was also a great tech. But she was also a good leader, and I relied on her to get things done. She never failed me. They both promised they would see me again. I look forward to it.

On another note...Thursday, I am to go in and have a feeding tube inserted. I had gone to the doctor last week, and I evidently had a touch of pneumonia. I was precribed some medications, which seem to have worked. To say I am apprehensive about the operation is an understatement. But I really have no choice. I want to get this done before it becomes and emergency, and while I am still strong. However, I do not relish anyone cutting on me. Nevertheless, I have little choice. As Tracy told me before she left....Be Strong, Chuck.
OK..I will try my best!!

ALS Walk

Well here I am again. Went to the ALS Association, and registered my team for the ALS Walk on Oct 19, 2008. I named my team Chuck's Volunteers.
I am always hesitant to ask for money for anything...I never was a very good salesman.
However..I do believe in this. Number one...the ALS Association does a lot of good. They are friends and problem solvers to those of us with ALS. Doctors tell us what to do, advise us, diagnose us. The ALS Association listens to us. They know what we are going through, and are always trying to help.
Also...raising money for a cure. I am not so sure they will find a cure in my lifetime. I am praying, but I am realistic. I know that research takes years. Oh well. But I do want to help someone else who might be going through what I am in the future.
Also..it gives me something positive to look forward too.
Anyway..we will try to raise money...

Family Reunion

Well.
I have been pretty busy lately. My son Peter planned and executed a family reunion for us. He got me and my wife tickets to Little Rock where we were met by my brother Rod and his wonderful wife Gwen. He drove us back to Millington where he lives. He recently bought a house right by the high school we graduated from so many years ago. My brother Steve and his wonderful wife Peggy was there to greet us. He had come down from Evansville, Indiana. Later on that week my Aunt Phyllis and Aunt Sharon from Fort Wayne, Indiana visited. And then MY Aunt Carolyn and Uncle Chuck from Baltimore, Md. visited. It was all fantastic. My cousin Luann was also there. I always enjoy seeing her.
We had a great time that week. I have a lot of problems speaking due to theALS and BUlbar Onset..however Leslie bought me a small whiteboard that I used to convet brief thoughts when the words I said were unintelligible. Thanks a lot, it helped tremendously.
We had a big barbecue Friday night and earlier Friday a friend of mine from the Navy that I had known like forever, but had not seen in over 20 years came down from St Louis. Jose and his wife Karen were kind enough to spend the day with me. Jose and I talked for hours. He was truly the inspiration for my career in the Navy. He was like a brother, and the best friend I ever had.
Well later that night, my brother Rod, in his infinite wisdom, put some music on that we could dance to. It was great. I love to dance, and my wife will dance at the drop of a hat. My legs fwlt weak cause of the ALS...and I danced a first with trepidation...thinking a might fall and emabrass myself. But after that i Just danced...and sweated and had a great time.
The evening ended late...some of the visitors leaving to go home.
But I will never forget that wonderful week.
Rod, my bro, is a Nuclear Engineer, and graduate of The University of Tennessee. He is smart, very smart, dedicated and a wonderful brother. He is a dedicated Republican, to a fault...but that is ok. He is kind and generous and very loving. He was lucky when he found Gwen, but they are good for each other.
Steve, my other bro, is also a wonderful guy. He spent 8 years in the Navy after high school, and then went to work in the technical field of computers and data storage. He is very smart, dedicated, and a good worker. He has three wonderful children...Steve..a Sgt in the Marines, Kathy, a mother of three, and Chad...who is a newlywed about to become a father. I am lucky to know them all.
Take care..another post will come soon.

ALS

Well, the reason for this blog is to submit my feelings and reactions to things in my life.
On June 11, 2008 I was diagnosed with ALS (Lou Gehrig's Disease) I have gone through the gambit of emotions, and am trying to deal with it. The physical limitations I have recently encountered coupled with the emotional outbreaks I have felt, have been one of my biggest challenges. My goal is to publish what I go through, and other things that have affected me in my life that have brought me to this point.
Have patience with me.
Later