Oddball

[CHD63]

Helen ....

I've been away from the Forum for awhile.  Glad to read that your CK was rather textbook.  The fatigue is pretty normal for almost all of us.  Keep posting to let us know how you are doing.

Clarice

[foodsmarts]

Hi All. I'm doing pretty well and have begun vestibular therapy. Since CK my hearing has remained about the same, taste is getting back to normal most of the time. I have periods of screwed up taste perception but most of the time, taste is normal. My big issue at this time is balance and the secondary one is adjusting to the single sided hearing which apparently just takes time.

After 9 months or so, I think I've worn out most of my friends and family. They always ask hopefully, "Are you getting any better?". I've learned to say yes and not to elaborate on any of the problems. Illness has a shelf life and we can expect people to simply lose interest after a while.  Thank God for this forum to let off a little steam once in a while.

[foodsmarts]

Hi. I had a big day/night today. Had a wonderful day at the Huntington Museum and Gardens (including a tea) near Los Angeles and drove home on really crowded freeways IN THE DARK. Here in the greater Los Angeles/San Diego area, our freeways are crowded, accident prone and if any space opens up everyone goes 80 miles an hour (or faster). It's a challenge in broad daylight negotiating lane changes (the fast head turning has made me dizzy ini the past) and I've been avoiding night time driving completely.

I have to attribute this incredible leap forward to the vestibular therapy I've been getting. I'm doing the exercise where you focus on a letter of the alphabet, placed against a busy background, and move your head back and forth quickly, keeping the focus at all times. It seems to be working.

I'm also getting used to the staggering and to peoples' reaction to me - I guess I've adjusted as I don't notice it as much or maybe just don't care. I'm so grateful to be able to get around and enjoy my life, that a little staggering is a small price to pay.

Speaking of which we had a perfect day here - about 75 degrees, some white puffy clouds were banking up against the mountains and the garden at the Huntington is loaded with gorgeous roses and oozing fragrance. We stood like dogs, four of us, inhaling the fragrance and soaking up the beauty. The grand finale was a walk around the new stunning Chinese garden.

Life is great!

Helen

[Jim Scott]

Helen ~

Thanks so much for your ultra-positive update!  Congratulations on driving the L.A. freeways and of course, your pleasant visit to the Huntington museum & gardens.  My wife and I visited the Huntington on an L.A.  vacation some years ago.  We once lived in North Hollywood (mid '70's) and I'm familiar with the Los Angeles freeway chaos.  Kudos for successfully handling it - at night!

I admire your buoyant attitude and hope that things just keep on improving for you!  

Jim

[Captain Deb]

Helen,

I adored your poem and have secretly renamed it "Ode to a Wonkyhead."

You need to meet Sue who is our Poet Lorry-ate.  She's written some great stuff as well.  Glad to hear you are finished with treatment and on to your new life!

Hugs,
Capt Deb