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enunciation and clumsy

golf_gal's picture
golf_gal
Posts: 69
Joined: Dec 2011

DD says I am slurring words as if medicated, especially upon waking . Sometimes my mouth just doesn't work right!!! Last chemo of folfox6 was Feb. 15. Chemo, op, chemo. It's hard to explain the latent effects with motor skills. Probably the Oxaliplatin. I still wake up in a panic, but down to three a week since I'm in Hawaii visiting DD. Going down stairs...I need rail. I'm just 54. I'm clumsy and can barely do yoga when we stand on only one leg. I just feel off balance. Big toe still numb. I sometimes weave when I walk...unsteady, but not frail. Maybe someone here could concisely explain what's going on to help DD understand? Thanks friends,

Jamie

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I definitely think its the OXI..
I have the same experience from time to time..
like the brain know what I wan't to say buy my mouth can't say the word..
the unsteady feeling and clumpsiness.. like I may trip if not aware of what I am doing..
At this point for me it is wait and see.. doc say it can take up to a year and a half to resolve.. but it is unnevving.
I have stopped wearing heals .. unless I absolutely need too..
Stair I find a little scary going down them.. not so much going up..
Hang in there.. you just finished the drug. it should get better.. I actually had a surge in the effect about 4 weeks following the last infussion I thought I wanted to die. but then I got that virus that was going around and I got my doc to give me antibiotics and once I was done with 2 rounds of them it all eased up.. to just an annoyance now.. but it is still here and i finished in November..
Peace.
Donna

Lifeisajourney
Posts: 217
Joined: Apr 2010

and ended up in hospital for 10 days...for falling, talking like a duck, neurpothy....that was 5/09....I have lots of neurpothy in hands/feet, they thought I had a stroke, even had a spinal tap... talk well now,,,,but my reaction started like you mentioned...let onc know....Pat

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

The same thing happened to me. It was one of the nausea medications It was making my eyes shake which I didn't realize but the doctor saw immediately which is what was causing the dizziness. Have someone move their finger back and forth and tell you if your eye shakes. If it is the med causing the issues it stops after you are off of it for a day or two. The slurring will too. I am sorry I do not recall which prescription was - I was on so many. Keep us posted and try not to worry. It's probably just a mix of the mess.

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Hi Jamie,

I had treatment today and my brain feels like it's in somewhere else. Not in another room, more like another planet. My speech is pretty messed up today and it's taking a lot of mental effort to put together the sentences of this post. Sometimes when I'm talking I'll use a word that doesn't belong like instead of saying "let's go to dinner" I'll say "let's go to summer." Other times I'll even misplace a word. I can see it in my head and can even write it, but I can't say it until someone else does and unblocks it. As for clumsiness, to put it simple "gravity is not my friend." That is definitely from the oxy. Today's treatment has my mind and body so messed up today that I need to use a walker for even short distances.

As a suggestion, you might want to talk to your doc about getting on something like neurontin or lyrica for the chemo induced neuropathy. I started on it for neuropathy before my dx and I'm positive that the effects would be much worse without it.

God Bless

Doc/Ray

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

1 Year after FolFox (Oxi) and I still search for words. I will give synonyms to my wife while talking and she will guess the correct word. lol When typing I can look up words. It is getting less frequent then during Chemo.

Best Always, mike

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Wow Mike, I thought I was only one that had that problem! Sometimes I can give a description like when I couldn't say "Boston" I started saying things like "Beantown, home port of the USS Constitution, go to Cheers" so that someone could fill in the blank for me. I've also started using what the English call "Cockney Market Language" to help me get to the word by the back door. I'll start off with an unrelated word(s) that rhyme with the word and then work my to it. That tends to generate some rather puzzled expressions.

golf_gal's picture
golf_gal
Posts: 69
Joined: Dec 2011

Wow. I'm not alone. Good to know, and pray we all get our brains in order. DD had never heard of chemo brain. It seems as though she doesn't want to know much either. I only see her once a year so I'm trying to put her mind at ease. Hawaii is a long way from Florida, so she never was around since my met showed up in April 2011. Then good ol treatment started. Don't think those who don't undergo chemo understand what happens. Anyway, she seems a little less concerned about it all now. Thanks to all of u for sharing. Keep it coming!!!! Aloha, Jamie

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

"Don't think those who don't undergo chemo understand what happens." At the retreat I went to last week, I pointed out that I can sit and talk for hours about the vastness of space in terms of trillions of miles, lightyears, and parsecs but it's all intellectual, there is no way I can understand it on the visceral level. It's the same with the nurses and docs unless they've been there themselves. They can offer sympathy but not empathy.

danker
Posts: 1270
Joined: Apr 2012

We are truly a group unto ourselves aren't we? No one knows unless they experience it/

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

My Onc was not forth coming on all of the side effects of chemo.

@Doc Hawk you described how my wife and I interact sometimes. When we are with new people they do not always understand. We were just at the Relay for Life and the description without using the word happened. I told the other couple this was a side effect of chemo. They seemed understanding.

I keep stating, after Chemo is a new normal. If I could not laugh at myself I would cry. Luckily I laugh a lot.
Best Always,
mike

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I told my husband to use a "crouton" when he puts his drink on the coffee table. I meant coaster, but had been thinking about the salad I was planning on making for dinner and somehow got the two words mixed up. And I'm a year out of treatment! It should be noted that my perfectly healthy husband told me that I meant "cup holder", so maybe some of this confusion just comes with getting a little middle-aged.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I hope you slugged him.. No bars held.

This is the part I hate the most..

I get paid for my speaking and thoughts and when I get the words wrong at work I just want to crawl under the table.. at home I take it with a grain of salt.
I go back to my desk and practice the right words aloud 10 time to teach my tongue and brain to work together.. I have no evidence yet this works.. but I am hopeful.

I am middle aged but that comment couldn't have been worse than sayihg it must be menapause dear.. oh man..

Some at work said to me oh it must be chemo to me and that made me angry too..
I turned around and said what could not have been meaner..
Is today the first time you used that brain and I walked away.
I need no reminders..

sorry ,, I needed to get this off my chest.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Jamie, Hang in there.. seems like we all have Oxi-Brain.. couldn't sell this like Oxi-clean info-mercial.. no one would want to buy this...
All we can do is hope it eases up.. I feel better brainwise when I keep up with my vitamin D.. and staying positve.. don't give into it.. I know tough love.. but I find it necessary for me to keep going. It is too easy to give up and give in to it having to be horrible.

Good luck.. Stay Strong...
Donna

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