Twinsmom
Senior member
- Joined
- Sep 2, 2009
- Messages
- 606
- Diagnosis
- 07/2009
- Country
- US
- State
- FL
- City
- Miami
I know we're supposed to see the positive, but some days, it's just so hard...
I feel like we're living a good news/bad news bad joke-
bad news
My husband's condition continues to deteriorate. Up until now, what was being "experienced" as weakness and decline in function, wasn't really observed in the neuro testing done with the doctor...until this last appt. 2nd EMG showed more "damage" than the 1st (20% -but, we'll see the positive in that...it could just be difference in machine :roll: ) They now "see" the weakness in his legs and arms and notice an abnormal gait when he did the neuro testing at the office. Bucky complains that his legs feel "rubbery". Not falling or stumbling, but just can't keep up with others and looks stiff when he's walking.
He can't hold his camera bag anymore, or even keep his camera held for any more than a few minutes before having to put it down to rest. And for him, this is huge, as his photography is his love (next to me of course! :roll:
But... Good news (I think)
Still holding out on an ALS diagnosis, because he's not progressing with his decline at the rate "normally" seen by our neurologists. Bad News...His last EMG showed more deterioration than the 1st one, but again...not awful. They can't decide whether it's just that they started this journey earlier than is typical (thanks so much pulmonologist who pushed us to the neurologist! )
Even though every test under the sun has been done, and come back negative, (good news!) we are going to re-test for chemical toxins and a couple of "out of the box" autoimmune diseases. AND, since we don't have a diagnosis, let's get in touch with the VA docs up in DC who are doing studies on the soldiers who've served in Iraq and see if they have any insight- Any PALS or CALS have a contact for this? We would like to find the right specialist asap and try to get in for a consult.
I'm not sure what I'm more stressed about...the not having a diagnosis (if it's NOT ALS, but something else, then let's figure it out so we can treat it for G_d's sake!) or...watching my husband become sadder each day he tries to do something and sees that he is not able...I'm trying hard to hang on to the fact that he is still VERY FUNCTIONAL...but my heart breaks each time I see him struggle to get out of the chair. To see him losing his balance at the doctor's office was surreal!
Dear Lord, how do you all survive this? I haven't been posting much lately, because all you PALS and CALS are so brave and courageous...I feel like such a fraud!
If I am struggling to make it through this part...and he's strong still, how in the name of all that is holy, am I going to be able to be strong for him if/when he declines?
Trusting in my Lord right now is out of discipline, not cuz I "feel it"...
I feel like we're living a good news/bad news bad joke-
bad news
My husband's condition continues to deteriorate. Up until now, what was being "experienced" as weakness and decline in function, wasn't really observed in the neuro testing done with the doctor...until this last appt. 2nd EMG showed more "damage" than the 1st (20% -but, we'll see the positive in that...it could just be difference in machine :roll: ) They now "see" the weakness in his legs and arms and notice an abnormal gait when he did the neuro testing at the office. Bucky complains that his legs feel "rubbery". Not falling or stumbling, but just can't keep up with others and looks stiff when he's walking.
He can't hold his camera bag anymore, or even keep his camera held for any more than a few minutes before having to put it down to rest. And for him, this is huge, as his photography is his love (next to me of course! :roll:
But... Good news (I think)
Still holding out on an ALS diagnosis, because he's not progressing with his decline at the rate "normally" seen by our neurologists. Bad News...His last EMG showed more deterioration than the 1st one, but again...not awful. They can't decide whether it's just that they started this journey earlier than is typical (thanks so much pulmonologist who pushed us to the neurologist! )
Even though every test under the sun has been done, and come back negative, (good news!) we are going to re-test for chemical toxins and a couple of "out of the box" autoimmune diseases. AND, since we don't have a diagnosis, let's get in touch with the VA docs up in DC who are doing studies on the soldiers who've served in Iraq and see if they have any insight- Any PALS or CALS have a contact for this? We would like to find the right specialist asap and try to get in for a consult.
I'm not sure what I'm more stressed about...the not having a diagnosis (if it's NOT ALS, but something else, then let's figure it out so we can treat it for G_d's sake!) or...watching my husband become sadder each day he tries to do something and sees that he is not able...I'm trying hard to hang on to the fact that he is still VERY FUNCTIONAL...but my heart breaks each time I see him struggle to get out of the chair. To see him losing his balance at the doctor's office was surreal!
Dear Lord, how do you all survive this? I haven't been posting much lately, because all you PALS and CALS are so brave and courageous...I feel like such a fraud!
If I am struggling to make it through this part...and he's strong still, how in the name of all that is holy, am I going to be able to be strong for him if/when he declines?
Trusting in my Lord right now is out of discipline, not cuz I "feel it"...