Status
Not open for further replies.

kiwisally

Senior member
Joined
Sep 16, 2011
Messages
639
Country
OO
State
OO
City
OO
hopeangel66 posted this under the thread Physical therapy!, when it was suggestion that they might want to start their own thread rather than post something completely unrelated there they got snippy and claimed they didn't know how, so here it is, done for them. Believe me when I say I'm not suggesting anyone spent the time to answer, just trying to help out those in the Physical therapy thread.

Hopeangel said: "that she might as a retired (3/12) occupational therapist (40+yrs) one of my last pt.'s was a man with ALS whose children could not and would not accept his diagnosed.of ALS. he had seen a local neurologist who performed the blood work, MRI's, EMG's and then was given a 2nd opinion at Shands Neurology, Univ. of Fl., Gainesville, Fl., with further and more extensive testing performed. the initial diagnosed was MMN and a course of IVIG ther. was given with no positive results and the subsequent ALS diagnosed followed.
the children will not accept it. this is very stressful for the pt. they are pressuring him to go for more tests as they feel it could be a "100 diff. things". they encourage mayo, johns-hopkins, emory etc and on and on and when the diagnosed comes back the same, will want him to go to europe next.
how can these children be led to believe the true diagnosed of their father and that is IS ALS, accept it, and be supportive of him? why cont. the huge expenses of traveling the country and world and use up all of his funds?
any ideas or suggestions our there?"
 

hopeangel66

Active member
Joined
Nov 10, 2011
Messages
32
Reason
PALS
Diagnosis
11/2011
Country
US
State
Fl
City
Port Orange
thank you sooooooo much kiwi for all of your help --- again we meet
from: snippy
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Hopeangle66 it is understandable that the family is still in denial as the diagnosis of ALS is hard to accept. The best thing would be if one of the children could go in with their father to his next appointment. I'm sure they were very upset when it turned out not to be MMN. Also, you could give them the info. for this site so they could ask some questions. It is difficult to learn the intricacies of the forum when you are new. If you have more questions, go ahead and ask please.
Laurel
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Denial isn't all that unusual. The father will have to stand up for himself and just say he's done with further testing--assuming he's been diagnosed and 2nd opinion by competent neuromuscular specialists. Or, hey, contact the ALSA and ask them to speak with the family...here in FL the counselors will come do a home visit and speak with family. Don't know about there--but I'm thinking FL since you've mentioned FL in the post. They seem to have a pretty good ALSA here.
 

SueG

Distinguished member
Joined
Sep 30, 2010
Messages
213
Reason
PALS
Diagnosis
09/2010
Country
US
State
ME
City
central
Laurel and notme have really good suggestions. Second opinion is entirely reasonable but they don't have to travel clear across country to get it.
Good luck!
Sue
P.s. thank you Sally!
 

hopeangel66

Active member
Joined
Nov 10, 2011
Messages
32
Reason
PALS
Diagnosis
11/2011
Country
US
State
Fl
City
Port Orange
the children of the ALS pt. say: the first (local) neurologist didn't do enough tests. he did MRI, extensive blood work, EMG's. the second opinion neurologist, at Shands Neuro at Univ. of Fl. "didn't act like he was even interested in the case, pt. or diagnosed. " and didn't order any new tests -- per children.
hmmmmmm ----- both dr.'s. i believe, did all of the necessary tests, reviewed all of the symptoms of the pt., and ruled out any other diseases, even gave IVIG for MMN, with no results, thus the ALS diagnosed.
with 2 opinions, wouldn't that be enough for these children ----- apparently not.
will contact ALSA in fl. in their area. great idea and thank you.
 
Status
Not open for further replies.
Top