This Doesn’t Sound Good

Robert had an appointment with the neurologist Tuesday afternoon.

It is a day later and I am still processing what happened. Still kind of spinning, actually.

We have had a rough few months trying out a new med and fending off an overwhelming amount of congestion (which I see as an oncoming pneumonia train).

We have seen a rapid decline in just about everything as well as a lot of new behaviors and symptoms. Things have declined so much Robert is using a wheelchair at Day Program and sometimes around the house.

He can’t move his right leg, is very irritable and downright belligerent, still has constant congestion, excessive saliva, flaky scalp, gum and water sensitivity, decreased memory, decreased appetite, trouble with spatial awareness, difficulty standing from a seated position and does this coughing/choking/gasping thing that scares the heck out of me.

Phew!

Robert would sleep 18 hours a day if we let him. Actually, he does anyway because he falls asleep in the car, at Day Program, and at home. This week we started sending him to Day Program only three days a week so he can sleep in as late as he wants the other days.  On Tuesday, he slept until 12:45. It’s not like he’s up all night either – he is in bed by 7:00 p.m. most nights and asleep shortly thereafter.

I was convinced all this was caused by his new med, Trileptal. Either that or he was experiencing a decline from a lifetime of uncontrolled seizures, surgeries, medications and falls. There is not a lot of research on what happens to adults after all this so I couldn’t figure this out.

Mr. Google failed me.

I pushed for a neurology appointment but couldn’t get one for a month. I was finally able to get it moved up a week which was something. I wanted suggestions on how to manage this and wanted to know WHY this was happening.

After running Robert through a battery of tests and having him stand and asking if he felt sensation and checking his reflexes and grip, the neurologist asked about his incontinence. Yes, he has bladder incontinence and has also developed frequent bowel incontinence.

I was prepared to be told this was just the natural progression of uncontrolled epilepsy. I expected to have that discussion. I was absolutely ready for it.

Instead, I was given what I can only describe as the worst news possible.

Cervical Disc Disease with Myelopathy. The neurologist’s nurse practitioner (who is wonderful!) explained that the leg weakness and inability to use it, along with his increasing bladder and bowel incontinence, were signs of this. She wrote an urgent referral for an MRI of the neck and told me to call on Friday if I haven’t heard from their office.

At this point, I still had no idea what this was and she said with this degeneration Robert could become quadriplegic. The neurologist said he may need surgery. What? No. That can’t be. Do you really think he has this? She explained that in Robert’s chart he had an MRI done in 2009 which showed the neck was compressed so she and the neurologist think things in that area have deteriorated.

I don’t recall this at all but that was early on in my care of Robert and there were a lot of things going on. Unless I was told it was something serious and to worry about it, I let it slip out of my head.

Note to self: worry about everything – even things I don’t know to worry about!

I could not even process this information. This just does not seem real but there it is on the after visit summary: Cervical Disc Disease with Myelopathy.

I was so stunned with this diagnosis that I found myself laughing completely inappropriately when talking with my daughter. She and I had the same reaction: this is absurd. This cannot even be real. We were mortified by our fits of laughter but knew how awful, how terribly awful this new information was. I relayed the information to a friend and, again, found myself laughing.

I am losing my mind.

This cannot be happening. I still am hoping the MRI shows nothing and that all of these symptoms and behaviors are something else entirely.

That is a possibility.

Is that hope or denial talking?

The doctor ordered lab work so is checking to see what else could be going on. They don’t think his behavior is related to the new diagnosis but maybe it is. I think I would be pretty cranky if all of a sudden I couldn’t walk.

In the meantime, I am searching for as much information about this as possible. And fretting about what other things I don’t know about.

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!)

4 thoughts on “This Doesn’t Sound Good

  1. Jane

    Trish:

    I am so, so sorry that you have been slammed with this. I know what it is like when we get bad or not so good news at the doctors. I know that you will get through this and you will find out as much as you can about this and make the best choices for Robert. He is so fortunate to have both you and Richard taking care of him.

    I know this is scary and new but you are such an awesome caregiver you will do great with this new challenge.

    You are in my thoughts and prayers.

    Hugs:o)
    Jane

    Reply
  2. Profile photo of MeghanMeghan

    I’m really sorry you are going through this Trish. As little comfort as it is, at least knowing what is wrong means you can move forward with treatment. I find for myself, the fear of the unknown is the worst. I can’t make a plan of attack if I don’t know what I’m fighting against. You and your family will be in my prayers. Big hugs to you all!

    Meghan

    Reply
  3. Shirley

    Trish, I feel so bad for you and Robert ,what an ordeal more stress on top of more stress why do we need to fight for everything thing it should be easier when you are going through so much unbelievable they put you through more stress ,good luck you are doing a fabulous job!!
    Big Hug
    Shirley

    Reply

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