Hi folks, it's Abe. Vanita and Rick are doing all right ... sorry, I'll write an update about them soon. Meanwhile, here's a timely message she wants you to have, crossposted from my site:

This being Stroke Awareness Month, take just a minute or two and learn these signs. Why, you ask? Aren't strokes only for old people?

No, stroke is the third-leading cause of death ... and it strikes everyone. Yes, the elderly. Yes, the overweight. But also young adults who are physically fit. Even, sometimes, children. It's true.

And the thing is, since nobody believes it will happen to them, many don't take the signs seriously enough. Sudden, excruciating headache? No problem, I'll sleep it off, just like I did in college. Dizziness? Inability to walk? Oh, it's just the sun. Get me a cold lemonade and let me sit here a while.

But a while is too long -- you only have about an hour to get those clot-busting drugs at the hospital that will dramatically improve the rest of your life.

Don't play around with this! Take just a minute or two and study these symptoms. There aren't many. Go over them once or twice, for you, for your loved ones.

This message is brought to you in honor of my courageous friend Vanita, who one day in her late 30s suffered a sudden, excruciating headache. Last year, she jumped at Skydiving for MS.

Keep going, girl!

Vanita showed off her new Dynavox technogizmo that helps her speak. It's a colorful hard-plastic keypad with a small screen, that speaks the words she indicates. It can also control your entire house, once you get everything hooked up. It will take a while to learn everything -- she's still learning the swear words! -- but what an incredible tool to grow into. The state of Kansas obviously takes care of its own. That, and she's attending regular physical therapy with the American Stroke Federation. She's a fighter.

Thanks for the support this year from all the thoughtful and loyal people we've been fortunate enough to meet here. From Rick and Vanita's home, and mine, enjoy the happiest holidays!

--Abe Munder

[Written by Abe]

abemunder@aol.com 

PERMAGRIN (SKYDIVING FOR MS 10)
by Abe Munder, the Wheeled Wonder
(AbeMunder@aol.com)

[I've been away a long time. But I had the chance to meet Rick and Vanita recently, and under the most incredible circumstances! Read on, dear readers, in admiration--which is the spirit in which it was written. Next update: pictures! -- Abe]

They call it Skydiving for MS, except there wasn't much skydiving involved. Not for this guy with MS, anyway.

That's a big deal! I wait all year long for this. How many opportunities do you think I have to get o and write columns, which I willut of this wheelchair, anyway? And I've been good, no complaining. Because actually it's been two years, since the weather last year let no one jump.

Here's how good I was: I got up at four in the morning. Repeat, four in the morning! That's to be out on the field at seven. A 7:30 jump time. The only slot they had left, all day! That's even after Chicagoland Skydiving Center brought in an extra plane to go up and down throughout the day, both planes ferrying a dozen or more jumpers on each trip.

I did all that, like a good boy. But it still didn't happen. In fact, I was the only one not to jump. I had to wait for a steady breeze to pick up, or I might land too fast. (Consider the girth of my ego alone.)

In the meantime, Diane got to jump. She's Old Faithful--except for the old part. She drives almost every year from Akron, eight hours one way. She even hung out last year, that dreary-weather year, and still had a smile on her face as we shivered around the bonfire. But this year, she went up. It was her second jump, and she made it look easy. Landed on her feet. Like she's James Bond or something. Nice.

Jaci got to jump. She drove 12 hours, all the way from eastern Pennsylvania. She's been going through a real rough patch: first, selling her beloved bookstore, and then, a divorce. She had been eyeing this event for years. Lately she's been wanting to do something new, something big, on her own. The time was right.

She and Diane looked like commandos in matching black jumpsuits. I watched them land in the field about a 100 yards away. Behind them the line of brightly colored nylon windflags waved like cheering spectators. The commandos hugged in elation.

Jaci was electrified the rest of the day. First jumps are that way. No doubt she's worn a hole in her jump DVD by now.

Meghan Honeman got in her first jump. A beautiful young woman, 28, with a bright positive smile. She was diagnosed with MS last year. Then her sister, Katie, 25, was diagnosed. Aren't those super-precise MRIs wonderful?

But Meghan didn't sit on her hands. She raised $2,225, then jumped from 14,000. Some people won't let anything stand in their way.

Speaking of which, let's see, who else got to jump? Vanita. Ah, Vanita. She is the story of the day.

For the past few years, Vanita has been lugging around one of those on-again, off-again MS diagnoses. Even with all the MRIs and record number of diagnoses going on now, MS is still often difficult to diagnose. Vanita, like many of us, was languishing in medical purgatory, with that terrifying question mark hanging over her head. After you've done that a while, the horrible words "you've got MS" can ironically be a great relief. Because before those words, you were limping like a wounded animal, fearful and hurting but uncomprehending as to what it's all about.

And then it only got worse.

That's when Vanita's strokes started. At first they too went undiagnosed, mistaken for attacks of MS. But they kept coming, and because of the nature of strokes--once you suffer one, you are bound for more--it was imperative to discover the cause.

Here was another difficult diagnosis. At first they figured on a clotting disorder. Then, one keen specialist detected the real cause in a misty smudge on her brain scans: a rare condition called moya moya. It is a hardening of capillaries in the brain, which on scans appears as a ghostly blur. "Moya" is Japanese for "ghost," but this condition isn't child's play. Urgent brain surgery was needed to avert the next stroke, which could be a killer.

Vanita got through the risky surgery. But in the first vulnerable moments of recovery, she suffered another stroke, a powerful one. She escaped with her life, but since then she's had an unrelenting struggle through therapy. She walks again, with an impaired left leg and arm (the same as before surgery). However, she still works on regaining speech. She can vocalize, but not talk. This would be tough on anyone, but it is particularly for a writer like her.

But this is no sob story: she came to jump! I had her stalwart husband, Rick, call the Wizard of Air, Nathan Dexter, my jump guru who specializes in tandems with the disabled. Nathan has taken me up four times. Nathan is game for anything, but he's responsible and told Rick he would make a final determination on Vanita's status when they met.

When the day came, Vanita did indeed get the OK. She suited up. But Nathan was booked solid. The jump would go to tandem instructor Greg Poston instead.

All right, Greg is a quiet, unassuming guy ... who just happens to have 3,000 jumps. That's right, he's an instructor at jumpzones across three states, but Mr. Expert-on-Wheels here didn't know him. So, while Greg's preparing Vanita for her jump, I'm pestering him with all sorts of inane questions:

"Shouldn't you be tying her hands in front of her chest to prevent shoulder injury, like Nathan did mine?"

"Only a suggestion, but is there enough wind to land her safely?"

"Uh, only wondering, Greg, if you should go with the American chute instead of the Australian one?"

I'm not a guy to worry, but I could foresee this being one of those times I keep my mouth shut, and then ...

But "then" turned out to be a perfect jump, perfect landing. "Then" was Greg bringing them down nice and slow, like kissing a cloud. "Then" was a ride back to the hangar in the golf cart through an applauding crowd, like she was a returning astronaut. And "then" was an acute case of "permagrin" on Vanita's face the rest of the night by the campfire.

Permagrin is what they call the thrill that courses through your veins for hours after your first jump, the one that lights up your face like a billboard. But we all had permagrin that night, as we laughed around the bonfire.

That goes for the jumpers who came in from across the country just for this event, like Todd Davis. Todd sold his stake in CSC to his partner Doug Smith, and moved to California. But "if there is one weekend I'll come back for," Todd told me, "it's this one." He is one of the reasons Skydiving for MS exists.

Stephanie also had the permagrin. She and her husband, Josh, a surgeon, are award-winning competitive jumpers. That very day, Stephanie received her hard-earned Ph.D. in microbiology. She cut out of the ceremonies, shoved the diploma in the glove box and high-tailed it to Hinckley. For her, the real party was at the jumpzone, at the one event she does not miss. By now, she and Josh are in San Antonio, following his residency. But on a certain day next year, they'll be back.

My friend Wendy Booker flew in to get the grin. This woman can really, truly be called an adventurer. Just in the last year, she has scaled new peaks in New Hampshire and Argentina. She is also the representative of Teva Pharmaceuticals, one of our sponsors, and she jumped for the first time last year. Now she's hooked!

Organizers Dave and Ceil Perez knocked themselves out once again. Their permagrins came not just from happiness, but exhaustion as well. Per usual, they took the lead in raising money, getting the band, putting out great food and a great party. It wears them out more each time, and yet they keep getting back on the horse and doing it up even bigger the next year. This couple, along with CSC's Doug and Carolyn Smith, are the biggest heroes on a day when there are many of them. And 54 planeloads, 934 jumpers and $30,000 later (all records, by the way), they deserve as much rest as they want--but they're probably already building SkyMS-2008 as I write this!

Permagrin is what Skydiving for MS is about. I've got it right now, writing about it. I'm grateful for that annual charge of permagrin--I run on the stuff for months afterward, like an STP treatment for the spirit. That steady breeze never did come in for me, but when you've got a million watts of perma-current flowing in you, who needs to jump?

But that reminds me ...

If all these other people continue to outshine me year after year, I may eventually have to find another spectacular event. I mean, a column like Abe Munder, the Wheeled Former Wonder isn't as snappy.

So I'm thinking, Get Shot Out of a Submarine for MS. Or, how about Dropped From a Hot-Air Balloon Onto a Mattress for MS? I'm working on it, people, I'm working on it.

(Thanks to the contributors, the participants, and the CSC staff who made MS-X one for the books!)

[This column crossposted to Abe's Wonderblog, at http://thewheeledwonder.spaces.msn.com]

Abe writing again:

Great news.  Vanita finally, after all these months, had the trach tube removed.  Remember, it was only supposed to be a temporary measure, and she has wanted to be rid of it for some time now.

Breathing and swallowing are fine.  (I can see her rolling those green eyes: Duh!)  She is drinking cola, a little at a time.  Clearing her throat is proving a bit difficult until her skin heals, but that is happening rapidly.

Therapy sessions are scheduled through the first week of December, and then break time until the new year.

Rick and Vanita have a standing invitation to spend Thanksgiving with the family of her Uncle Les (the coolest dude), but they have a long-standing personal tradition to spend at least part of the day alone.

They have a lot of thanks to express to one another, and also to everyone who has supported them so steadfastly this entire year.

Happy Thanksgiving to all who visit here.  May you and those you hold dear be blessed with health, abundance and peace.

Vanita had an interesting night recently.

It was a tough, even discouraging, day in therapy. If you've ever been there, you know that some times you become sick of the pain and struggle, sick of the same-old surroundings and smells, sick of your therapist's voice, sick of it all.

Vanita came home on the transport. Rick was gone to work, but Denise was there to greet her. Vanita and Denise have known one another since junior high. I think Denise whupped her in the schoolyard. They've been inseparable ever since.

That week, Denise was staying to help around the house. After almost 30 years of friendship, she knows things. She saw the look on Vanita's face, and took her in her arms.

I don't know if or how much she'd allow herself to do this during this whole grueling ordeal, but Vanita lost it right there in those familiar arms.

"Go on, let it all out," Denise said. "You can cry now."

This stretched on for a long time. When the tears finally stopped, it wasn't because Vanita had run out of heart-ache so much as she had run out of energy.

But abruptly, she rose to her feet. She walked down the hallway. Denise followed.

Vanita stopped at the refrigerator. She pointed to the bottle of Coca-Cola.

"Yeah?" Denise shrugged. Vanita had been building to this point for a long time, and now she remained insistent. It would be days or weeks before she could get in to ask a doctor. No, now was the time to finally try this.

Denise poured a cold glass of soda, and held it along with a straw for Vanita to sip.

Naturally, Vanita was tentative at first, allowing only the tiniest drop of liquid to touch her tongue. But she swallowed just fine, and the smile on her face said it all. It was the tastiest thing she had ever experienced.

They were both giddy as Vanita sipped more of the soda. Denise marked the calendar to commemorate a special day. But Vanita wasn't finished yet.

Denise had put on a pot of spaghetti-o's for herself. While it sat heating on the burner, Vanita walked to the oven and grabbed the pot handle.

Denise rushed over. "Hold on, girl! We can't be going crazy here." Rick has always been an athlete, and Denise did not want those big hands of his wringing her neck when he got home.

But once again, Vanita was insistent. And as the saying goes, when you can't beat them, join them.

Rick came home a while later to a houseful of giggles. The two little Yorkshire terriers, Audrey and Byron, yapped excitedly. What the heck? All his protective alarms were set wailing. He hightailed it to the bedroom.

In the doorway, Lisa stood laughing. (She has known Vanita even longer than Denise, and she and her family have been incredibly supportive.) Rick rushed to her side, and saw why. His eyes popped.

Vanita and Denise sat facing one another, knee to knee. Denise leaned forward holding a red spoonful of spaghetti-o's, which was promptly gobbled by Vanita's waiting mouth. Denise was chopping the noodles as best as she could with the spoon, and Vanita was swallowing, pleased as punch with her first taste of food in over six months.

All in all, from heartbreak to triumph, it was an amazing night. One that everyone who witnessed it will not forget.

There is one more week of all-day therapy before annual insurance limits are reached. Then Vanita will take a well-earned break for the holidays.

It's been a great run, marked by constant progress.

After the new year will be time for her to power up and resume where she's left off. More speech therapy and articulation, more strengthening and balance, more swallowing and breathing work. There is no turning back from here.

Thanks to all for your comments and prayers. You are a generous and caring community, and Vanita and Rick are grateful to you. I will follow up with another update soon.

The hours and days of hard work are paying off.

Vanita is more and more communicative. More nodding and facial cues, more gestures and pointing. Perhaps most important, her vocalizations are fairly constant and becoming more focused. She's uttered a couple of definite, intelligible words for her therapists. This, in addition to spelling (through pointing at letters), laughing and general clowning.

It's great seeing her break out of her confines.

On two occasions now, she has walked up and down a flight of stairs. She simply decided to do so one day at home, where 15 steps lead to the second floor, with a landing midway. The last couple steps of climbing were a little bit shaky, but she rested and went back down again.

At the next therapy session, she repeated this for her therapists at the facility. She's more motivated than at any time past, pushing against those artificial boundaries.

She continues her all-day outpatient therapy, five days a week. This place was a real find, proving so beneficial to her recovery. Her day consists of several sessions targeting different areas, separated by rest breaks.

There was a scare when the insurance company announced it would count each individual session against her yearly limit, changing their previous agreement to count an entire day as one session. Rick and close family-friend Lisa even took time out to get a crash course on administering home therapy after discharge. But happily, after some hot phone calls, the insurer reversed itself. Good job, Rick! This grants Vanita a few more critical weeks of therapy.

In the meantime, Vanita continues to work on swallowing, and as in everything else, is making slow, steady progress.

Thanks for all the positive messages, folks! You are generous and thoughtful.

Greetings to you all:

I am sorry for having left all of you in the lurch since August 8th, but as you will read below we have been blessed again with help from a dear friend. Early in my attempt to let all of Vanita’s friends know how she was doing I had the opportunity to meet Steve (Pilgrims Progress) and he kindly kept Vanita’s site updated for me while I learned how to post on Spaces. So as not to abuse good friends, I have called on another of Vanita’s (now mine too) good friends, Abe Munder.

Vanita first met Abe back in 2002 when she was first (mis)diagnosed with multiple sclerosis. She became a regular on the AOL message boards dealing with MS, where Abe was a regular contributor. They became fast friends. I was fortunate enough to get to know Abe a couple of years later. During Vanita’s long hospitalization (130 days total!) Abe called to talk with Vanita several times a week; during the critical times ... every day. His support was indeed a godsend for us both. Given that he knows well all that Vanita has endured and, in particular, what has transpired since August 8th, I have asked him to provide the latest update.

I must also confess that, at least from my perspective, Spaces seems a little quirky. Steve offered earlier that, perhaps, it does not like my Mac; more likely, my limited knowledge of HTML has not allowed me to format my posts correctly. I am one of those people that is intent on “pointing and clicking” my way through my digital-life. In any event, I (should read: Vanita) am fortunate enough to have not one, but two, friends to give me a hand.

So, I will thank you all again for your unwavering supply of well wishes, thoughts, and prayers. I have said here often: I do not think we would have gotten as far as we are without all of you ...

My most sincerest thanks to all of you,

Rick

Abe wrote:

Big news: two weeks ago, after more than four months of hospitalization, Vanita was finally discharged as an outpatient. At last she's home and happily sleeping in her own bed.

Unfortunately, the transition was not a smooth one. In the preparations for the outside, some of her meds and treatments did not dovetail well going from inpatient to outpatient. It was a case of too many cooks, with the result being missing or contradictory orders. The results weren't pleasant. Vanita suffered a setback that threatened to undo a lot of her recent progress. However, after some righteous haranguing by Rick, he was assured that any ill effects would be only temporary, and now a week later it seems to be so. Thank goodness.

The great news is that Vanita walks! Using a KAFO (leg brace), she goes everywhere. In the hospital, she paced the halls restlessly, relentlessly. At home, she and Rick walk to the end of the cul-de-sac, circle, and then come back. The other day she did the circuit twice. After the first lap, Rick asked if she was ready for a breather. Flashing a stubborn streak that lately has served her well, she walked right on by. Apparently she has places to be.

The condition for her release is that she attends a day-long outpatient physical therapy facility. This is five days a week, six hours per day. Very structured, with different exercises and specialties, and breaks scheduled between sessions. Sounds daunting, but Vanita excels at this kind of focused exertion. She has a concentrated drive, a machine inside her, that pushes for results: some days tiny ones, some days almost miraculous, but she keeps on churning nonetheless.

Her biggest issue now is to relearn and strengthen her swallowing mechanism. Something that most of us take for granted hundreds of times every day and week, swallowing actually involves several muscles working in coordination with each other. She is swallowing, she is clearing her throat, but she must continue working on it until it's again a foolproof process. This and the relaxation of her jaw muscles are key to removing the trachea tube. It's close, right around the corner, but the work continues.

Meanwhile, Rick's work situation has intensified. He is a computer consultant and teacher for Apple, and when the school year begins, so does demand for Rick's expertise. This includes regular travel. The hospital discharge and the new work schedule have him feeling a bit ragged, but as always, he's solid as a rock and doing his best. With the help of close friends and family, he and Vanita are rebuilding a stable home life together.

Thank you all for your prayers and notes of encouragement. Your support means more in our hearts than we can convey. We will keep in touch. Be well, friends.

Friends,

Sorry for the long gap in updates, but we have been "busy" getting her acclimated to a new facility; and, of course, getting them acclimated to me, a VERY active advocate for her care. We are finally getting all the bureaucratic details finalized that will allow her neuorologist from KU to have emergency privleges at Select Specialty, which was so important to us.

Vanita is still stable ...

So, it has been a slow week of getting used to new surroundings, procedures, and doctors (lots of them!); and, of course they to me. All, including our trusted Dr. Terry, have stressed to be patient; this process will most likely take place over "months" not days or weeks.

With all of your help, we WILL prevail!

Rick

Friends,

This may end up being the hardest part of the process ... the waiting. I am sure somewhere during all of this someone has mentioned this to me, but while in crisis resolution mode I don’t think my mind was truly focused on this waiting concept. Not sure if it is bad or good, but nothing much happens here over the weekend (unless it is emergency), but that seems to be what Vanita needs right now ... healing time.

• as predicted, within 24 hours she was off the ventilator for any kind of breathing support; the only thing they are pumping through her trache is for the purpose of keeping her air way/mucus moist and thus easier for her to cough up; that is what they want her to do and she is showing improvement; it also makes it easier for them to suction it out if she can’t get it high enough in her throat
• they have been able to keep her heparin at a therapeutic level for the last two days; this, of course, is a precursor to her going back to coumadin (another IV line removed from her!)
• she is beginning to move her lower jaw around; sometimes when yawning (then she gets her mouth open wide); she also is moving her lower lip/jaw quite a bit while trying to deal with the saliva in her mouth and the mucus she is able to cough up
• they have ordered her a “cardiac” chair that will allow her to get out of bed and sit up; this would be another big step in numerous ways: getting her off of her back, help in getting her to start coughing up stuff from her lungs on her own; and just the stimulation of getting up; if the chair has wheels and Vanita can be secured in it, I will see if I can give a spin around the hospital

However, the most encouraging event to me occurred last night (Saturday) while she was visiting with two of her life-long friends (both alluded to often in her writings); they were sharing stories ... “glory days” if you will ... The point is that we were all seeing smiles on Vanita’s face and distinct and appropriate blinking responses to questions regarding the events of each tale. We had seen a hint of smile (we thought) a couple of other times, but nothing like this. In addition to her smiles (admittedly difficult with a lower lip still twice the size of the upper), her eyes were moving to each person in the story as its details were told again for probably the hundredth time.

The most amazing part to me: I walked in on the middle of this story sharing and one of her friends was in the process of reiterating that I had indeed contacted a “certain” individual about being sure to come see her in the hospital; I should note here that the significance of this person is something only Vanita should tell; she spins a better tale than I anyway. I am introduced into the conversation with the statement to Vanita that, “Here’s Rick now; ask him if he went to see _____, or not.”

I am provided a ten-second update as to what I am to confirm, or not. When I confirmed for her that I had indeed contacted _____, she looked at me with a familiar “Vanita” look that roughly translated means “bull shit, you did not”; that was followed by a quick but familiar glance to her friend, roughly translated as “you weren’t shitting, were you?”

When you live with someone for 10 years, you get to know all their emotions and the expressions that color them so vividly. I had not seen that level of emotion ... and “knowing” ... since prior to her operation. I guess the bottom line for me is I know she is “in there” and fighting like hell to come busting out. If only too find out if I really did contact _____.

We are half-way through a long weekend; we are hoping for an even better update next time. As has been said by so many of you, much more eloquently than I ever could, the power of all of this ... of all of you ... is simply beyond any words I can find.

Rick