Wednesday, June 25, 2014

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.


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. 


Leslie said...

Oh, Trish!

Laughter is normal. Don't beat yourself up over it. It's a stress reaction.

It is unbelievable to me how life is just so unfair. One of my least favorite sayings is, "God doesn't give you more than you can handle." such bull-crap.

Sending you all my love and lending a pair of shoulders to help carry some of that burden, along with the worry.

Love, Leslie

Trish Hughes Kreis said...

Leslie, I'm not a fan of that saying either. Another one I loathe: "This will only make you stronger." Ugh! I'm already very strong, thank you very much!

Thanks so much for your support and love. I really appreciate you reaching out. I'll keep you posted.

Love, Trish

Anonymous said...

Dear Trish,
I don't know if you have autoimmune disease in your family or not,but a few things stood out to me in your account of Robert's symptoms: exhaustion, low blood pressure, excessive sleepiness, inability to stand,decreased appetite,irritability at times. It could be that more than one process is going on.It sounds like cervical myelopathy is a possibility, but go on the website, and see if you think he has many of those symptoms. He doesn't have to have all of them. If yes, get him tested by a endocrinologist. Neurology is not necessarily going to pick up on those types of problems. Good Luck! I hope you can find the answers so both of you can have a better life.

Trish Hughes Kreis said...

Jo, Thank you for pointing me in that direction. I checked out the website you mentioned and don't think that quite fits but I'll keep it in the back of my head for sure. A lot of Robert's sleepiness is from all the meds he's on but also this new diagnosis. He also has Parkinsonism so is going to see a movement specialist. We'll see what they can come up with to help. I hope all is well with you and your family. It's amazing how we have to become experts on all of these disorders/diseases! Take care.