Pulling rank

[jfaidley]

Want to second Laurie's excellent suggestion to switch providers if that is possible. Not sure if it's appropriate to name names (of providers, clinics) on this forum, but will assume so. Please correct me if I am wrong and I will avoid in the future! Since Manhattanite is in this neck of the woods, will mention that we went for a consult at the ALS Clinic at Columbia, and the quality of the interaction with the doc (Neil Schneider, the director) and NP who saw us was superior by leaps and bounds to our current doc/clinic. There are (uninteresting and complicated) reasons we are stuck with our current lackluster situation... Also, since we only visited that once, perhaps we just got lucky and my rosy assessment is not characteristic of their care in general. But it was the first time I felt like the doctor really listened, welcomed and responded to questions instead of being annoyed by them, etc. So may be worth further investigation.

 

[Manhattanite]

Thanks everyone for weighing in. I was sleep deprived last week and being oversensitive but nothing like a long weekend of rest to view things with a different perspective.

We love our ALS clinic and are happy with our neurologist, so I think all I need to do is address the issue politely at our next meeting. I am grateful for my SIL's help and involvement and I know my PALS wants her involved. Back in February when I presented the concept of hospice to the family, my SIL said she would defer to me 100% on the final decision. But as Laurie said, it is important to clarify who gets to make decisions in times of crisis.

One interesting development since I wrote my post is that the psychotherapist wrote a long email to the neurologist, cc'ing me, in a tone that was somewhat aggressive, asking for an increase in the antidepressant my PALS takes and asking for more services from hospice. In turn, the neurologist called my SIL to complain about the therapist's email. Honestly, I am glad I didn't have to deal with this battle of medical egos. But the fact that the neurologist called my SIL confirms that I need to set him straight as to who is managing my PALS day-to-day care.

Jfaidley, we have had nothing but poor experiences with the New York ALS org. Their liaison at one of the clinics is incompetent and a waste of time to the point that I always request that she not be present. Dealing with the organization is worse than dealing with hospice in terms of bureaucracy and slowness to respond. On the other hand the MDA (Muscle Distrophy Association) has been amazing - their loan closet is well managed and they have been incredibly responsive and generous with us.

 

[jfaidley]

Very glad that things seem to be back on track, and that the solution seems relatively straightforward. Wow, that therapist sounds like a piece of work! Thanks for the tips on the MDA, and clearly we've had vastly different experiences with the ALS Assoc. Funny how that is sometimes. Am going to look up the MDA, because I need a lift from the loaner closet and would like to see if they have a smaller one... Best of luck with everything!