- Status
Al
Moderator emeritus
- Joined
- May 25, 2004
- Messages
- 8,083
- Reason
- PALS
- Diagnosis
- 10/2003
- Country
- CA
- State
- On
- City
- NW of Toronto
I'd say that if you're looking that closely at the inside of your mouth then there is something to worry about. But it's not your cheeks you should be worrying about. You're getting way too paranoid. Looking for every small twitch or shake will drive you crazy.
AL.
AL.
Marjorie R. Wilcox
Senior member
- Joined
- Nov 21, 2007
- Messages
- 661
- Diagnosis
- 10/2007
- Country
- US
- State
- New York
- City
- Richmondville
Looking for trouble
We all do it don't we? We know what to expect so we look for it to happen. I know with Rick, we spend the evening watching his right toe go up and down rythymically. I ask him if he can consciously stop it... and he can if he thinks hard...but on it goes. Sometimes his whole leg will give a jerk or will "jitter" in spots. We try to ignore it, but we look at each other with a look of disdain, without saying out loud that we know it is the ALS.
Rick's ALS started in his calves. He had been gradually losing his balance, and had been staggering like maybe he had been drinking. That was going on for about a year or more. Last spring when he first wore shorts, I noticed his right calf was deteriorated. He used to have powerfully, big muscles in his legs. Since then the left one began to loose size too. Then in July the explosion happened (a homemade cannon) and he is fighting to keep the right leg. He is having his sixth surgery next month..March. We have kind of put the ALS on the back burner because of all the attention the leg injury takes.
His neurologist stated "Just because you were beginning to have a bum leg, is no reason to try to blow it off!" We laughed... He knew we would. Rick is very laid back and has a great sense of humor. He is dealing with mild diabetes, severe sleep apnea, and the injury.... and never seems depressed!
I guess what I am trying to say is, I think we must just make the most of each day. Be happy with the NOW. Yesterday is gone and tomorrow isn't here yet. Start each day with a plan to get something accomplished, help at least one other person, and do some things that give you joy.
I am rambling, but before I go, I want you all to know that we weren't participants in the cannon firing and consequent backfiring into the crowd. We were at a church picnic of about 40 people, children included, and were just spectators. The cannon was set off for our entertainment. The welding on the casing gave way and the whole homemade cannon exploded into the crowd. It is fortunate people weren't dead....Rick has been "walking" with his walker like crutches... putting his weight into his arms and dragging his body along on the other leg...for 7 months now. He may not be able to bear weight on the injured leg for at least another year. In the meantime the ALS may not permit him to get back walking.
It is a crying shame that Rick had to suffer this injury also, but hey, we don't get a choice, do we? So if we can help somebody to look at Rick and see how well he is doing, they shouldn't pity themselves much. At least you weren't hit with a projectile besides having ALS!
And we spend part of every day looking and watching for more symptoms. We just can't help it.
We all do it don't we? We know what to expect so we look for it to happen. I know with Rick, we spend the evening watching his right toe go up and down rythymically. I ask him if he can consciously stop it... and he can if he thinks hard...but on it goes. Sometimes his whole leg will give a jerk or will "jitter" in spots. We try to ignore it, but we look at each other with a look of disdain, without saying out loud that we know it is the ALS.
Rick's ALS started in his calves. He had been gradually losing his balance, and had been staggering like maybe he had been drinking. That was going on for about a year or more. Last spring when he first wore shorts, I noticed his right calf was deteriorated. He used to have powerfully, big muscles in his legs. Since then the left one began to loose size too. Then in July the explosion happened (a homemade cannon) and he is fighting to keep the right leg. He is having his sixth surgery next month..March. We have kind of put the ALS on the back burner because of all the attention the leg injury takes.
His neurologist stated "Just because you were beginning to have a bum leg, is no reason to try to blow it off!" We laughed... He knew we would. Rick is very laid back and has a great sense of humor. He is dealing with mild diabetes, severe sleep apnea, and the injury.... and never seems depressed!
I guess what I am trying to say is, I think we must just make the most of each day. Be happy with the NOW. Yesterday is gone and tomorrow isn't here yet. Start each day with a plan to get something accomplished, help at least one other person, and do some things that give you joy.
I am rambling, but before I go, I want you all to know that we weren't participants in the cannon firing and consequent backfiring into the crowd. We were at a church picnic of about 40 people, children included, and were just spectators. The cannon was set off for our entertainment. The welding on the casing gave way and the whole homemade cannon exploded into the crowd. It is fortunate people weren't dead....Rick has been "walking" with his walker like crutches... putting his weight into his arms and dragging his body along on the other leg...for 7 months now. He may not be able to bear weight on the injured leg for at least another year. In the meantime the ALS may not permit him to get back walking.
It is a crying shame that Rick had to suffer this injury also, but hey, we don't get a choice, do we? So if we can help somebody to look at Rick and see how well he is doing, they shouldn't pity themselves much. At least you weren't hit with a projectile besides having ALS!
And we spend part of every day looking and watching for more symptoms. We just can't help it.
CindyM
Moderator emeritus
- Joined
- Sep 17, 2006
- Messages
- 3,556
- Reason
- Learn about ALS
- Country
- US
- State
- New England
- City
- Anytown
LOL, the last time we had this conversation about our tongues, I went and looked at mine and discovered scalloped edges and indents where I never noticed before. Of course, this was the first time I inspected my tongue. It could have been like that all along, for all I know! :-D
Al is right- there must be a better use of our time.
BTW, my local neuro wanted to know if there were any new symptoms and I said, "if i tell you will you be able to do anything about them?" He said, "Probably not." So I said, "Then I'd rather not talk about it.":-D There! Problem solved!:-D
Al is right- there must be a better use of our time.
BTW, my local neuro wanted to know if there were any new symptoms and I said, "if i tell you will you be able to do anything about them?" He said, "Probably not." So I said, "Then I'd rather not talk about it.":-D There! Problem solved!:-D
MtPockets
Very helpful member
- Joined
- Jun 1, 2006
- Messages
- 1,544
- Reason
- PALS
- Diagnosis
- 05/2006
- Country
- US
- State
- Ms
- City
- Gulfport
Cindy and AL both have good points.
I once had a friend who when asked in an ordinary conversation, How are you doing? He would ignore the question and move on to something with a more positive meaning.
I mean how many people when they come to visit me really want me to sit there and tell them, HOW I AM? That would take up hours. Lets move on to something more productive.
Hey see the beautiful birds at my window feeder this morning? Anything positive, helps.
Just my 2 cents.
God Bless
Capt AL
I once had a friend who when asked in an ordinary conversation, How are you doing? He would ignore the question and move on to something with a more positive meaning.
I mean how many people when they come to visit me really want me to sit there and tell them, HOW I AM? That would take up hours. Lets move on to something more productive.
Hey see the beautiful birds at my window feeder this morning? Anything positive, helps.
Just my 2 cents.
God Bless
Capt AL
- Status
