Avoiding the cracks...

Despite what is sometimes my best effort Jim nearly fell through "the cracks" in the medical system.

With the evidence of progression I contacted the physican assistant (PA) for the FTD neurologist. Though I don't think it is urgent to get him in we had no follow-up setup. Thank goodness I called - the neuro is currently working in Las Vegas opening the Cleveland Clinic's Alzheimer's Clinic. He will be in town the first week of May for 1 day of patient appointments and 1 day of meetings. Though his schedule is full they squeezed us in since Jim is a "special" case. The neuro only sees his "difficult" cases while here (his words - not mine.)

During the conversation with the PA she asked when the ALS follow-up was. Well... that wasn't scheduled yet. Apparently we should have already been scheduled for July. However, the ALS clinic neuro we saw in January will be on maternity leave. Therefore, there are no ALS clinics in July. Good news is we got an appointment with the "main" ALS neuro.

In a discussion with the ALSA support group I decided to try to get a referral for in home physical therapy. Jim is really stiffening up - especially his upper body. So we saw our family doctor for that and pain management.

This was an enlightening appointment. The last time he saw this doc was in April 2009 when he was given the referral to the neurologist. That was the start of this journey. Anyhow, the doc comes in and asks what's new. I start to answer - the doc stops me wanting Jim to answer. (He is also my doc so he knows the whole story.)

Jim answers - "well I've seen lots of doctors"
Dr - "and..." Jim: "I became the human pin cushion" Dr: "and what have they told you you have?" Jim sat there for a minute then "they keep telling me but I keep forgetting." Broke my heart.

Well... the first PT appointment went well. They called to schedule the 2nd and Jim told them no... we wouldn't be home. OK - called the office back and reminded them NOT to try to schedule with the dementia patient!! Sad thing is I didn't learn this until much later!! Oh well, live and learn.