Hubby has New Symptoms

[shelleynshaggy]

Jim just told me that he has some fasciculations in his wrist this weekend while I was at work. This is the first upper extremity symptom he has had. He also had a pretty significant choking episode this afternoon - has not had a "serious" one in at least a week (at least that I have witnessed or he remembers). I often wonder what symptoms I am missing - Lord knows he is not the most observant about his own condition. He denied choking until it happened in the neuro's office.

I still think there is part of me that is in denial - like just because it is "ALS Syndrome" and not ALS things may still be ok and the doctors may be way wrong. He is still unaware of the "meaning" behind his diagnosis. Doesn't grasp much do to the dementia.
:-(

 

[Katie C]

I'm sorry honey. I know it isn't easy, and I know that you are doing a wonderful job. Hang in there... holler if you need anything.

 

[Ellamay]

Shelly,
I had to be the person to tell the dr's all of Tony's symptoms. When we went to our first ALS Clinic. One of the dr's assumed that Tony had done his research about ALS. Tony refused to even look at a website or book about ALS. He was in denial so far that I was unable to be. He only said that ALS will kill him so end of story. It has been a difficult road this last year to try to keep track of the symptoms as he would even often lie about his condition to the dr's. and I had to step around him and tell them really what was going on with him. Often I wonder if it was the FLD that kept him oblivious to everything. Until he could no longer deny that he couldn't do something. He has even said to me (with his dynavox) that he forgets he can't speak. I am often floored by his ability to deny his condition

 

[Micheline_h]

it's hard to admit what "is" going on as I want to be in denial so I keep it all inside. With all the stress I am under at the moment the nurses and doctors are just wait and see. As far as FL or dementia is not an issue in my case...It's always hard to hear from people that "you can't do that anymore" or "no more". We fight a good fight but there are times that why fight it anymore, since everyone else says there right?!?! Just reassure him and tell him how much you love him!

 

[jakaspiro]

Hi Shelly,
I know what you mean about being in denial. So far we don't have a firm diagnosis, its still in the lower part of his body, but we have seen a weakening in his upper portion as well. He is no longer able to work so I work full time and manage his care. I find myself not wanting to face each new loss. Its a very hard process to watch. His mind is fine and he has a great sense of humor so that helps me not get too bogged down, but seeing new symptoms is very difficult. I too tend to stuff my emotions rather than face them. He's been coughing more, is that related to ALS? He is utterly dependent on his power wheelchair and we're so grateful for it.!

 

[Katie C]

Speaking of new symptoms... tomorrow Glen is "letting me" drive him to work. He actually acknowledged that driving is getting a "little harder." Shelley knows... especially with our FLD guys, that much of acknowledgement that something is wrong is HUGE! The past few days he's been asking me more and more if I "want to drive him" places, because he "knows it would make [me & our son] feel better." I fear his driving days are about over. Probably for the best for his safety and that of others on the road... but so very sad. :-(

 

[GlenBrittle]

I am not !

 

[Katie C]

Well... turns out you were right Glen! Glen drove himself to work! You two are making my brain hurt!

 

[shelleynshaggy]

Katie - I had Jim's driving evaluated. Especially since he got into a pretty good accident last summer (he hit BOTH of the neighbors cars AND their House! - Long story) I was afraid that if he had another accident & insurance found out about FTD the would not pay. It cost me just a co-pay. Of course, not sure how accurate his evaluation is since they don't have minimum scores for his age group! We were there with a bunch of old people and walkers!

 

[GlenBrittle]

Katie,

Its hard to keep a Glen good.

Its good to keep a Glen hard.

There , that will make your head spin.

Glen

 

[Katie C]

wow.... a spinny head without the expense of wine! Cool!