Neurology Appointment: The Good, The Bad, The Ugly

The Good:  For years, Robert was treated for his epilepsy at UCSF which has a prestigious epilepsy center.  Robert tried out the Vegus Nerve Stimulator, participated in a study for the Deep Brain Stimulator study as well as underwent two brain surgeries by world-renowned surgeons.  He really has received the best care by the brightest researchers in the field of epilepsy.

Even though Robert’s seizures continue to be uncontrolled, his seizures changed from Tonic Clonic (formerly known as Grand Mal) to Complex Partial.  They 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 did that with 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) and finally talking with her supervisor.  Thankfully, this person was reasonable (although 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!

More Good.  I 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.

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

7 thoughts on “Neurology Appointment: The Good, The Bad, The Ugly

  1. Profile photo of DeniseDenise

    Hi–Ohhhh… That’s difficult news to swallow about the neurologist. Ugh. There’s nothing like the comfort and confidence from a doctor you like and trust and who understands. Was she able to recommend anyone in her place?

    Were you ever able to figure out the reason behind NH’s desire to attend the meeting with you?

    So glad you left your flyers! Another family caregiver will breathe a little easier knowing there’s support out there. :)

    Reply
    • Trish

      Denise, The neurologist did recommend someone else in her clinic who is the head of the department. She said she hasn’t been replaced yet so her patients will go to this guy. However, we talked about taking Robert back to UCSF and she thought that was a good idea too (she knows Robert’s former doctors). The problem with that is if he’s in the ER, his neurologist will be in the same system but not as easily accessible. I have to think on this one and also see what Robert prefers. I’m leaning toward staying here with the new guy for the next appointment, see how it goes and then make a switch if needed.

      As far as New Home, their SOP is to have the house manager attend all appointments with the clients. As I was talking to the (actually I don’t know her title, but she’s one level below the Executive Director) – anyway, she kept saying it’s to maintain “continuity of care” but then she almost was talking herself out of it because she’d follow up up with “but you are so involved in Robert’s care and not many clients have that.” Another reason was that it is the House Manager’s job and even though they are pleased with this HM, the last one kept trying to get out of work. (I relayed a story about how that previous HM let Robert run out of briefs because she forgot to order them and then called me while on vacation about it!). So, I think it was basically their own way of managing their employees. I don’t need to be a part of that and there’s no good reason for the HM to attend these appointments. I wore her down/convinced her of this and Robert and I were able to go alone. :-)

      I hope the flyers do help someone!

      Reply
  2. Profile photo of KathyKathy

    I can only imagine the sinking feeling of losing your team member, Robert’s Neurologist.
    But, I’ll quote you here
    “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.”
    Who knows? Staying where you are, you may hit it twice with new Neuro :)

    It’s wonderful that you had such a great relationship with her for Robert’s care.
    I know you will be anxious until you feel settled again..

    What did NH have to say for themselves for not filling Robert’s prescriptions properly?
    I won’t even get started >:-|

    So I’ll end this with YAY for disrupting the Neuro dept with the flyers!
    You’re so awesome like that :)

    Reply
  3. Trish

    Nurse Ratchet from NH sent a reply email last night saying she’d follow up with the pharmacy this morning. I emailed back at 11:59 a.m. (keeping supervisors and supervisors of supervisors on the email) to see if she had heard anything yet.

    Shocking – no reply. I’ll let you know what happens.

    Reply
  4. Profile photo of Roaring MouseRoaring Mouse

    Trish,

    I saw your mention of sepsis. Greg passed from a nasty version of that. I’m glad that Robert made it through that. Did they ever teach you the warning signs in case it pops up again?

    RoaringMouse

    Reply
    • Trish

      I know what to watch for and after his hospital stay started taking his vitals and (two months later) still do take his vitals to be sure his BP isn’t too low. Robert has low BP anyway but when he went in to the ER, it was less than 70/50. It would be helpful to others as well if you did a post about the signs, RM.

      Reply
  5. Profile photo of ejourneysejourneys

    Trish, good for you for persevering with NH and for cc’ing those emails. I’m a huge fan of paper trails.

    Speaking of which, did you ever get the seizure logs? And is there a way to get them on a regular basis?

    I feel bad that your neurologist is leaving. Ditto to Kathy — I hope her replacement is another gem and am keeping my fingers crossed.

    I love your consultations with Robert about whether to return to UCSF or stay at the local center. You two have a great partnership. :-)

    I’m also keeping my fingers crossed for the new treatment options. And YAY on the flyers! :D

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>