Cerebellar Retraction / Handwriting Difficulties

[Battyp]

Joef I hate writing checks!  If I can't do it on the computer then it doesn't need to be written  LOL

[Crazycat]

Max,

     Sorry I didn't get back to you sooner. I think that the only thing we can do in this area is to just keep practicing in order to retrain our brain and hand. I've also noticed that while I used to hold the pen in my hand comfortably and write or draw tirelessly for hours on end, my hand now feels strained and even gnarled while clutching it, almost as if I've been afflicted with some kind of palsy.
Even while in the midst of laboriously scrawling out a word or sentence, I find that I have to pause in mid-word or even mid-letter to sort of re-orient myself in following through the motion. Holding the pen doesn't even feel comfortable or natural like it used to.

         Paul

 

[Denise]

I am going to add my 2 cents worth.  I am right handed and my AN was on the left so luckily my handwriting has not been affected. However, my left side is about 2-3 seconds slower than my right side. When i am really tired my left foot kind of drags, running is impossible, unless I want to look like Phoebe on friends. My ENT surgeon said to use it or loose it. That this is not an uncommon occurence with large tumors.  So i try really hard to use my left hand, he also said that a good way to get my coordination back was to eat with my left hand.  Just to let you know it is not a pretty sight, and something you should only do in the privacy of your own home, away from teenage boys! 

Another thing I have been experiencing since day one, is i have no hot/cold sensation in my right side.  I am finally getting some sensation in my right fingertips, but no where else.  It is weird but i have grown acustomed to it.  I just have to be careful when  cooking and in the lovely MN winter.  My dr. said this lack of sensation is the result of a "brain stem insult" during my AN removal. He said they must have tapped my brain stem.  He said all feeling should come back. Takes forever!

So that's my two cents worth.  Thanks for listening (reading),
Denise

[Crazycat]

Hi Denise!

  Why'd you re-register? You ain't no newbie!

Seems that you're writing more. Are you feeling better?

Paul

[Denise]

Hi, Paul,
I am feeling good. Thanks for asking.  I sent you a personal note.
Denise

[Crazycat]

Thank-you Denise, great to hear from you!

          Paul

[matti]

     I've also noticed that while I used to hold the pen in my hand comfortably and write or draw tirelessly for hours on end, my hand now feels strained and even gnarled while clutching it, almost as if I've been afflicted with some kind of palsy.Even while in the midst of laboriously scrawling out a word or sentence, I find that I have to pause in mid-word or even mid-letter to sort of re-orient myself in following through the motion. Holding the pen doesn't even feel comfortable or natural like it used to.

         Paul

 

I experience the same thing.

Cheryl

[Crazycat]

Thanks for the corroboration Cheryl!

      Paul

[Dfcman]

Paul,

     It seems really heartbreaking that you once had excellent penmanship and are having trouble with your music.  Did you by chance go thru any type of occupational therapy?  Right after post-op, I was much like you are.  Couldn't write my name, had trouble lifting filled glasses,opening soda-bottles and Milk jugs, eating with silverware..all most other things you do with your dominant hand.  I've really come a long way in OT.   I just graduated from OT after about 6 months (2 days a week)

 At rehab they really stressed the hand out, but eventually, it slowly started to get better with practice.  I do just about everything now, but it seems since I had to basically learn to use that hand over again, it does feel awkward and different than it once did.  I used to never even be able to write my name, but now i'm doing about  6 or 7 sentences before my hand starts to cramp.  Yeah! It feels totally different.  It seems almost if the way I did it b4 wasnt working, so I had to retrain myself to do it again.  I dunno, I cant really explain it.

Anways, I will keep in touch with you, I hope you progress.  My cousin is an Occupational Therapist and she told me to keep doing stuff and if its challenging, then keep doing it.  Its the only way to get better. 

DFCMAN

[Crazycat]

Hello Chris and thanks for the empathy and encouragement.
      I've been in Florida since the beginning of the month and being away from home I'm not on the computer as much as I used to be. I'm down here spending some time with my girlfriend and trying to heal up. I've actually been doing some bike riding. Not as easy as it used to be (I used to do 30 - 50 miles a day without thinking much about it) . The hardest part is getting on and off the thing. Standing on one leg has been a bit of a challenge in the equilibrium department since surgery. Having to stand one one leg and swing the other one over the seat and then propel myself off on two wheels is a real challenge. Once I'm off and rolling I'm okay. Having to make quick, evasive maneuevers can also be troublesome. I'm sticking to bike paths because cars are now more of a menace than they ever have been for me. There's a great bike path here in Florida that runs down the gulf coast to Tampa along the Suncoast Highway. At night I go jogging. It's funny, I'll go out jogging at 11pm sometimes with shorts and a tank top and be drenched in sweat by the time I get back. And this is January!? Too much.

    I'll tell you: I think one of or THE most important thing that helps a person get by with equilibrium difficulties as we have is having strong legs. Strong legs help you stay centered and grounded. I think that a discipline such as Yoga in addition to regular strength conditioning would help invaluably with balance as well as with stretching.

   Another thing I've been noticing: As much of a disappointment as being irretrievably deaf in one ear is, it does not compare to the frustration and disappointments brought about by balace / equilibrium difficulties  and other left or right side neurological impairment - at least in my case.

    Paul

[ppearl214]

Paul,

you are missed around these parts... and let me/us know when you head back. Give MsJody a BIG huggle from me and send some warm weather, will ya? Freezin' up here!   Starbucks and Dunkin Donuts are waiting on us!

xo
Phyl

[Crazycat]

Hey Phyl!!

 We miss you too! Jody's been doing great! She got a job down here as a "Minister of Music" ( church organist and choir director at a huge Episcopal church here in Spring Hill). The second day we were here we walked in to a local Blues Club called "The Blue Note". They had a baby grand piano in the corner. She sat down at the piano and started pounding out Elton John, Paul McCartney and some jazz standards. They hired her as a solo house act immediately. Not just one but two nights a week!
     I brought enough of my gear down here to hook up with a band and work if possible, but I'm heading back home  in April so it really wouldn't be fair to get myself too involved with people down here, unless it was a fantastic situation.

  Are you planning another brunch? And where the heck is Captn' Deb??

    Paul

[ppearl214]

looking for brunch in March/April... check the "AN Community" forum.. see the posting there.

GREAT news about Jody!  As for you, I have a sneaky feeling you are getting some real good jammin' in with bands down there.  Best stay there rest of winter... the cold blasts we have recently been getting have not been pretty to this AN'er.

Miss ya!

Phyl

[Crazycat]

Phyl, please try for late April with the brunch. I'll be home by then for sure.

   Paul

[Dfcman]

yeah Paul..i'd imagine that riding a bike would be kinda scary.  But I did hear that its one of the best things for your balance.  My PT has been working on my legs a lot.  I do a leg press with about 190 lbs and some things with the quads.  I have also been standing on one foot and tossing a 6 lb ball at a trampoline.  I admit that helps a lot.  I used to only be able to do about 1 or 2 tosses and now im up to about 15-20.  With my right leg...I guess that's the bad one.  But yeah, its all getting better, pretty quickly.  Im at about 85-90% now id say.  6 weeks ago I was sayin about 75-80%.  So it helps that im still doing it and also im trying to stay active and might start running here when the weather up here in Pennsylvania gets warmer.  Hope all is well.  Take Care Paul.