January 1, 2010

I had begun my new year on 11/6/2009 so I just chilled out about the Big Night. A good friend stopped by with the remainder of some champagne so I could toast the New Year. “Chin, chin” as Tony would say.

Resolutions: none. 6 mos ago when I heard my diagnosis I kept propelling myself ahead to frightening options. Then losing a few months with surgery, I fretted about precious time being wasted. Somehow, through prayer or a miracle, I get up each day, throw a prayer up at the ceiling, groan, and roll out of bed.

… I am amazed I was even able to work for the last 4 years! The day slips by so fast now, and I might have only eaten a yogurt, read 2 emails, listened to the Today show, and sometimes that’s the fruits of the day, until I give God a shout-out and fight to try to sleep.

My son, Peter, had hydrocephalus and spinabifida and other serious issues, requiring hospitalization for the nearly 6 years of his life. His brain stem was all that sustained him, but even with those primitive responses, God found a way to shelter him. When under seige his body would go into hibernation, until he could move back into his routine.

I suspect I am experiencing my own hibernation, and withdrawing seems to be my coping mechanism.

“Chin, chin!” to each day of my life, one day at a time. Happy New Day~

Vicki

One day at a time. Just the nature of aging magnifies the preciousness of time. I recall as a child thinking living would be forever, and I would somehow escape aging. Risk taking is not just for the young, I now realize. Many wake up each day and say "God, this is not how I thought I would live this chapter of my life." Hang on, Vicki, it's gonna be a bumpy ride. But I'm not alone on the trip.

 
Her friends dubbed her Ruby Begonia
When her face would distort
and her body contort
and they’d wave and say “Good to know ya”

Dystonia. A city in Yugoslavia? or Russia? Oh don’t I wish.

With the joy of dementia (maybe the working title I should use for my book?) comes many accessories, I am learning. Some have extreme pain, some display Parkinson-like swallowing and mobility issues, others are accompanied by ALS (Lou Gehrig’s Disease), or Multiple Sclerosis. We all reside in the same map of the brain, so it is no wonder we share border crossings from time to time.

For me, it began with a rippling under my skin, not unlike feeling ‘life’ when pregnant. I remember my grandmother saying that, to her, feeling life felt like trout in her abdomen. (You can tell we grew up a hunting and fishing family.) I could feel it, but others could visualize it.

It might be on my calf, or my forehead would move, or my scalp. Odd little things, similar to when one’s eyelid takes it upon itself to flutter all by itself, like it has a mind of its own. We’ve all had leg or foot cramps that rise us up out of bed jumping and cussing. So I just figured I’d overworked that part of my body, tho the scalp thing seemed a bit odd.

While recovering from my broken leg and ankle surgery, I finally had the opportunity to show my daughter what I had been talking about for a few years. We both said “weird” and something moved under the skin on my leg. I began to think it was fish also.

After having come home from a 2 week stay in the hospital, I had an onslaught of things: infections, blood pressure, and one night came downstairs to say I was firmly voting for the red-haired teenager on American Idol, when my legs gave way, and began to jerk and shake, and my arms as well. My eyes began to roll. I thought it must be a seizure, but it got worse as we left in the ambulance.

My mouth moved into distortions that made the Exorcist look like a child’s book. Nostril muscles (yes, they have them) would close off my passageways, tongue resembled a cow’s in the butcher shop, lips curled, body writhed, back arched off the table, feet tried to touch my shins. The pain was excruciating, and because my jaw was locked I could only try to grunt “I’m alive”. When it would move to another part of my body, I would try to ask her to save me, and then my face would turn into the Joker’s, with a smile that nearly reached my ears or my eyes. My powerfully muscled eye-lids, would lock shut and push so hard against my eyeballs that I thought the would pop into my brain. My ears contorted. When my eyelids would release, I would beg her with bulging eyes, ‘save me, save me’.

All of which was ironic because 2 weeks before I thought dying would be the best for me and for my family and now, with 3 days of constant distortions and a parade of med students coming by, all I knew is I needed to live.

It was like something was pulling and pushing my body into shapes like you can do with Silly Putty. There nearly a week, we were all still puzzled if it was a Bermuda Triangle or an extreme anxiety attack.

Now, we know it is not. The last few weeks I’ve had some minor attacks, the more severe ones God brought someone by or a visitor who happened to be there, to remind me to breathe, to shove meds between clenched teeth, to sooth my brow, to speak softly.

But for my Frontotemporal Dementia/Picks it is a passenger on my trip.

Some of you have mentioned what accompanies your dementia, but if you could describe it, it would help us all so much.

FTD strikes younger adults – typically 40’s and 50’s, and is rarely diagnosed. People on the blogs, including mine, say they lost them in about a year from diagnosis.

Pray for us, and while doing so, pray for each other, and that funding and research will make this as familiar as Alzheimers.

As for myself, I keep fighting, challenging my atrophying brain to keep working, buying me time to be with my family, fall in love, and check off my Bucket List.

Love to you all who are traveling with me.
Vicki
.

She was maybe 4 1/2 feet tall, and maybe the same around. Her hair alternated between a lovely blue or violet hue. Everyday she put on her makeup, hose, corset, dress and jewelry, and left for daily Mass. She was French Canadian, if I didn’t mention that. Mabel Perry Wells. Just one of my story-rich family. Our matriarch.

She believed that love came from the kitchen, and none that I know of ever contradicted that premise. The perfect grandmother, Mimi had a soft lap, large bosom, and all the time of the we needed. She was earthy – but we didn’t know that until adults ourselves – funny, strong. Devoted to her family and all little children.

As a teenager, learning in her kitchen, she said these pearls of wisdom. “Learn to cook well, cuz we ugly-up early.” And I couldn’t figure it out for the longest time. Because she cooked the most amazing food and was just as beautiful.

She laughed as hard as she worked. She could make crying babies coo, plants grow larger, and her non-stop fingers created something beautiful non-stop, like a spider spins her web. Jewelry, lace, crocheting, baby layettes, embroidery, painted ties, crocheted doll clothes, ceramics, cookies, fudge, meals for neighbors, canned jewels from the garden … I never saw her idle. Yet I never remember her not sitting down with me, reading a book, painting my nails, spinning a tale and as I grew older, listening to my myriad problems that growing up, marriage and children bring with them. And how she lifted my first baby into her arms, lost in all but the awe of Beth.

I don’t know how she did it all. Widowed 2 times, living on next to nothing. But on nights like tonight, when my imagination takes me rushing to how life will play out, or my frustration at not being able to cook any more and still uglying up, of being sad that my dream of a good, loving partner being with me isn’t ever happening, the years of working like a dervish to be reduced to poverty, I wonder what she would say to me. Because I know she’s heard my pity parties, or brushed back my hair when in a nightmare, plastered across my forehead and neck. And, hidden in the back corner of the freezer I know if I looked, would be the emergency world’s-best fudge.

Mimi? Tell Papa it’s me, Vicki.

This is Beth in Mimi’s kimono and nightie. Mim did magic, having come from poverty. Bep was able to wear the nightie until she was over one year old, by a couple of clips here and there. Andrea got her own layette too, sewn on Mim’s treadle sewing machine, with her rheumatoid burdened hands.