Even though Robert’s seizures continue to be uncontrolled, his seizures changed from Tonic Clonic (formerly known as Grand Mal) to Complex Partial. The doctors at UCSF developed a regimen of medication for him which allows him to still enjoy daily activities and to have some independence. Robert had improved seizure control with the Deep Brain Stimulator until he developed a life-threatening infection which meant he had to have the hardware removed from his brain and chest and withdraw from the study.
When I took over his care, I grappled with the decision of keeping him at UCSF (which is a couple of hours from where we live) or switch him to the local UC epilepsy center which also has a stellar reputation. I chose to switch him to the local UC Neurology clinic and hit the jackpot. It turns out Robert’s new neurologist did her fellowship at UCSF and remembered Robert!
This was such a special find because here was someone who knew Robert before his steep decline of the past few years. She would understand how much his mobility and cognition had changed. Any hesitation I had about switching Robert from UCSF was gone once I found out she used to be involved in his care. I had high hopes he would get great, personal care.
She did not disappoint.
At his most recent neurology appointment, the neurologist did the usual battery of tests, listened to my concerns about the increased weakness on his right side and the dragging of his right foot when he walks. She confirmed he showed increased weakness on the right side and attributed it to his recent bout of pneumonia and sepsis. It’s fantastic to be validated and not have the doctor think I’m a crazy, over-protective sister.
Oh, wait – I suppose she could still think that. . .
Robert was put through a battery of tests: Remember three words: Apple, Table, Penny (Robert remembered only Table); Write numbers in this circle so it creates a clock (Robert got up to the number 20 before stopping and staring at the page for a long time, something telling him something wasn’t quite right); What city/state/country is it? (he answered “California” for most of these questions).
He was asked to write a sentence and painstakingly wrote out, “God loves you.”
He wrote that same sentence for his memory specialist too and it’s always fun to see the look on their faces when they read his sentence. They don’t really know what to make of it but always say, “Thank you.”
The Bad. Robert’s neurologist is leaving the clinic! Ugh! I’m sure she has a wonderful opportunity ahead of her because she is extraordinarily smart and really knows her stuff. I certainly wish her the best but the selfishness in me wishes Robert could follow her wherever she’s going. She was so sweet with her goodbye and said Robert really has a special place in her heart and told me about the other epilepsy specialist Robert could start seeing. I have to consider what’s best for Robert and ask Robert what he’d like to do (maybe going back to UCSF is an option) but this was a real disappointment. We are going to be sorry to see her go but I am excited for whatever she is going to do.
The Ugly. Of course, this involves New Home. I have always told New Home that I will take Robert to his neurology appointments, there is no need for anyone else to attend and I will update them on what happens. For whatever reason, they decided this time the House Manager should go. They weren’t even going to tell me – the only reason I found out is that I had been asking for Robert’s seizure log for a week and hadn’t yet received it. I was told I would get it when House Manager came to the appointment. This wasn’t House Manager’s call (I actually think she does a terrific job) but came from “higher up.” I spent an hour first talking to the House Manager, then her supervisor (who only could tell me they “prefer” to do it this way without really knowing why) and finally talking with her supervisor. Thankfully, this person was reasonable (although she was standing her ground for most of the conversation). I eventually convinced her we had been operating this way since Robert moved in! She relented on the directive and I was able to go to the appointment without a babysitter (although sans seizure log).
I also found out that the neurologist had written an order for non-generic drugs for Robert and sent it to New Home’s pharmacy back in April. For some reason, New Home hasn’t been getting these scripts! So frustrating!
More Good. IOkay, can’t leave on a sour note, so I will happily share that I was able to leave my Robert’s Sister flyers at the neurology clinic so others can easily have access to epilepsy facts and resources as well as Robert’s story.
Bonus Good. As far as what plan the neurologist has for Robert, she talked about new drugs coming on the market but agreed with me she’d like to try the non-generic medications he is already taking first. She also said when the Deep Brain Stimulator is approved by the FDA, we should consider that for Robert again since it seemed to help him. The previous infection as a result of the device was a fluke and may have had more to do with Robert’s living conditions than anything (this was right before I took over his care).
I am very pleased with the appointment and can forget about the trouble with New Home. Most importantly, I am hopeful for these treatment options.
Hope outweighs the bad and ugly any day!
2 comments:
That's great that you were able to leave flyers for the site! No doubt that will help many people.
It's hard to be able to find the good in changing situations-- but you do a great job at that!
Thanks, Allie! Sometimes it's more difficult than others but I do try. :-)
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