LISA TODAY

May 26-29, 2006

Phoenix, AZ


It is Friday, May 26th in Phoenix with Lisa. Hey everyone, Lisa’s husband Richard here, dad's driving back from Illinois and can't get to a computer; so it falls to me to give you all the good news that Lisa’s Baclofen pump went in this morning without a hitch. As dad mentioned in his last update, this medicine promises to remove the last major obstacle to Lisa’s beginning her rehab in earnest. In the test earlier this week, Lisa responded extremely well to a very small dose after just a couple of hours. So well, in fact, that Dr. Kwasnica (dad, please not the correct spelling) discontinued the trial. The doctor is "excited" about Lisa’s prospects.

Let me thank all of you for your prayers, thoughts and support, and for keeping them coming, Lisa’s got a lot of work ahead, and having your cards, notes and e-mails to read (to her) and literally post is a real blessing. In particular I’d like to thank Lisa’s Father-In-Law, Mother, Uncle & Aunt for their support, and effort to visit Lisa.

Today’s story is about a good and evil. Good, which we will call Baclofen* (Back-low-fin), and Evil, which has come to be known as Spasticity. Baclofen has come to join the fight against Lisa’s evil foe and all around bad guy, Spasticity. Normally-you-see, Lisa’s muscles receive electrical signals via nerves to contract and relax. Spasticity (her evil foe) comes about by an imbalance of electrical signals coming from the spinal cord through the nerves to the muscle. This imbalance causes the muscle to become hyperactive, resulting in involuntary spasms. Baclofen (our hero) works by restoring the normal balance and reducing muscle hyperactivity. In this way, it allows for more normal muscle movements.

Baclofen is taken orally as a pill or delivered directly into an area of the spine called the intrathecal (intra-the-cal) space. The intrathecal space contains the cerebrospinal fluid -- the fluid surrounding the spinal cord and nerve roots. Often MS patients (and those like Lisa) receive intrathecal Baclofen because oral Baclofen causes unpleasant side effects, such as confusion, weakness, and sleepiness. But intrathecal Baclofen delivers the drug right to the target site in the spinal cord. Since the medication does not circulate throughout the body, only tiny doses are required to be effective. Therefore, side effects are minimal.
The intrathecal Baclofen pump system is the way doctors give the drug directly into the spinal fluid. The system consists of a catheter (a small, flexible tube) and a pump. The pump -- a round metal disc, about one inch thick and three inches in diameter -- is surgically placed under the skin of the abdomen near the waistline. The pump stores and releases prescribed amounts of medicine through the catheter. With a programmable pump, a tiny motor moves the medication from the pump reservoir through the catheter. Using an external programmer, your treatment team can make adjustments in the dose, rate, and timing of the medication.

* The information about Baclofen is from “WebMD.COM.” The article I used is from the originated from the Cleveland Clinic; and appears on the Internet: http://www.webmd.com/content/article/57/66125.htm.

As I report these recent events to you, it’s late Monday evening; Richard and Michael are back from their extended weekend visit with Lisa. Now, over the weekend, Richard had a meeting those attending were Donna Cheek, Deb Pope and Christine Kwasnica (note the corrected spelling of Christine’s last name) The topic discussed was how to best provide the skilled, staff levels required Lisa to control spasticity during the time it will take the Baclofen to reach its therapeutic level.

As of now, Spasticity has not had it way with Lisa, as she has not suffered permanent injury from it. Richard’s meeting came about after the hospital’s chief executive officer pulled two key Restorative Aides from Lisa’s bedside and their ranging therapy. Yolanda and Bruce, the aides, were effectively ranging her and holding back the effects of spasticity. Commenting on why the aides were dismissed, the CEO said, “… their assignment to Lisa was not cost effective (or words to that effect).” Meanwhile the meeting continued and Deb Pope, Therapy Supervisor, and a person who has great concern for patient care, stepped up and offered to personally range Lisa. Then Richard, to make up for the staffing shortfall hired Yolanda privately after clearing the hire with the CEO. Additionally, Sherry with her medical expertise expects to also be involved in ranging her, and who knows, I could be a resource. We will be in Phoenix with Michael over the coming June weekends. This incident puts a face on the conundrum hospital administrators have been complaining about for a long time as they deal with the issues to solve the balance of providing healthcare services and its companion, the cost to provide the service. This is a head-up should you or a loved one be faced with a future hospital admission (my personal editorial opinion).

“Lisa, what’s wrong?” Richard asked, as he could see Lisa face was flushed. From past experience, Richard knew something was bothering her. He guess right the first time, “Surgery, is it the surgery that worries you?” Lisa, whose eyes were wide open, closed them for a long blink. This had become the sign for “Yes!” Lisa whose pillow was restricting head movement, chose to use her eyes to communicate. Richard then continued. He walked her through the surgery. She came to understand how it would benefit her. Much of Lisa has not changed. One thing that hasn’t is that surgery is not among her favorite things, as her personal experience with it is very limited. She still has her tonsils and appendix. Anyway, Lisa understood the why of it, and came on board with a Big Blink. You’ve got to love the team work between these two. Richard said, “after they paused a while, she seemed calmer and reassured.

Tomorrow (now today, as I continue writing this) Richard leaves (left) for Ada, Oklahoma. He will be there during June. You may contact him at the following number: (520) 419-5857, if he doesn’t answer, please leave a message. Remember he will be in trial so don’t expect an immediate reply.

You have really helped Lisa and the family with your prayers, acts of kindness, and well wishes. At the risk of going to the well one time too many, I want to ask you to include Lindley Bliss, MD who is Lisa’s attending physician at the hospital. Dr. Bliss coordinates her medical care. He’s been a superior, solid guy, who is kind, compassionate, and quick to respond. Today, (yesterday) he slipped on a wet spot in the hospital cafeteria fell and broke his ankle. Please join us in our good wishes and thoughts for his speedy recovery.
Jack & Napua Davis, and David & Suzanne Goodspeed have been very supportive of Richard, especially during the recent difficult times, and for that we’re putting our kudos go to them all. You have earned the big star. Thanks folks!
It has taken a lot of support, from a lot of people, many of whom are unsung to make this giant wheel turn. I wish there was some way to give each of them a gold star!

Michael
Oro Valley, AZ (PCS)
mlwintory@msn.com

Andrew Smith (6) and Cousin Michael (3 mo.) new best buds. (during Michael's Galesburg visit.)

LISA TODAY

May 19, 2006

Phoenix, AZ

When we last talked, I told you that Lisa’s physician, Christine Kwasnika, M.D., said she would talk with the cardiologist about the risk/benefit of administering a drug to Lisa to control the effects of spasticity. Well, she did, and more so, she also talked with Dr. Decena whose sub-specialty is electro-physiology and it was he who attributed the cause of Lisa cardiac arrest to Long QT syndrome. It was also Dr. Decena, who got her electro lights in balance and implanted a cardioverter (cardiac defibrillator) into her chest on March 9^th. Well, he’s back to help out again (this time) with deciding which drug and what regimen would be optimum for Lisa. Something Dr. Decena said to the family shortly after Lisa’s March 9^th surgery, is applicable now, “… the healing process has begun.” Lisa is now cleared to receive Baclofen*. The drug will be administered to her in small doses over a period of 2 - 3 weeks for her to reach a therapeutic level. Dr. Kwasnika expects Lisa to stop suffering the consequences that spasticity imposes upon Lisa as she exercises her muscles. The penalty imposed upon her by spasticity is that the more she moves (even sits up) and works her body the more spasticity compounds its evil effects. Lisa doesn’t have to take this anymore as modern technology will be pressed into service with the implantation of a tiny pump will be installed to administer drips of Baclofen in very small doses in order to keep the dose amount low and controlled for the most effective level. spasticity compounds its evil effects. Lisa doesn’t have to take this anymore as modern technology will be pressed into service with the implantation of a tiny pump will be installed to administer drips of Baclofen in very small doses in order to keep the dose amount low and controlled for the most effective level. Dr. Kwasnika left with these parting words: “[Now]… we can see what she is capable of… [doing].”

Michael (mlwintory@msn.com)

*Footnote: Baclofen is used to relieve muscle spasms, pain and is a muscle relaxant and an antispastic agent.

Photographs: Lisa with Michael, February 10, 2006 and Michael 3-months later on May 15th

LISA TODAY

Phoenix, AZ

May 16, 2006

... so it was with Lisa, that the time had come for Richard to ask her therapists, Marty, Maureen and her physician, to speak candidly with him about Lisa’s progress, and the likely outcome of her therapy. Marty, the physical therapist said, “Lisa is working hard toward her physical rehabilitation.” “She wants it, she needs it; she knows it.” Here’s an example, Marty said, “... during Monday’s therapy session, we lifted her from a seated position with a rack or patient lift (similar to example 1 shown at the right) and with the standing sling (similar to example 2 shown below, left) that supported her standing upright. Lisa began flexing her extensor muscles without prompting. The extensor is a skeletal muscle whose contraction extends or stretches a body part. (The rack incidentally, is a device the physical therapists use to lift a patient from a seated position to being upright.) The term rack; however is probably not the true medical-technical term for the device, but, as-they-say, “if it looks like a duck and quacks like a duck, it’s a... rack.” I know you’ve heard this sort of logic before, but I don’t get to attempt humor very often, and I just couldn’t resist. Anyway, with the support of the rack Lisa’s body is able to bear its own weight. Then Richard bluntly asked, “What is her range of recovery?” “... from what I saw on Monday, Marty replied, “on the high-end, I can’t rule out her walking, and on the low-end, Lisa would regain enough stability to enable her to sit upright in a wheelchair and operate it.

Maureen observed, “Lisa’s recent and dramatic swallowing is an encouraging sign of progress,” and added “She still has quite a journey ahead of her to communicate with speech and/or eat solid foods.” Everyday for Lisa is a day of opportunity and she faces it with grace and determination. But, last Thursday and again on Friday, Lisa became quite frustrated with her inability to speak. Maureen told Richard, quite plainly, that she did not want anyone to ask Lisa to attempt to speak or ask her to vocalize in any manner. Maureen’s judgment was vindicated today (May 17th) when Lisa mouthed the words, “I WANT.” Maureen spent the morning helping Lisa to form words with her mouth and tongue; without asking her to attempt to make a sound. She noticed that Lisa’s facial muscle tone was limiting her ability to move her upper lip, but not her tongue, lower lip or jaw. While Maureen did the work, Connie reaped the benefit. As Connie was placing Lisa into the infamous rack. Lisa mouthed, “I want” not once, but twice, and Connie said, “… unfortunately I could not make out the rest of what she wanted me to know.” But Connie continued working with Lisa, and a moment later had a thought, she asked, “Lisa, do you want to sit down?” To which Lisa produced a curt nod, “Yes!” to be rewarded with Connie’s prompt compliance. What a day in the neighborhood, huh? Group hugs all around.

Dr. Christine Kwasnika continues to struggle with balancing Lisa’s spasticity with the arsenal of medications available that are capable of controlling muscle tone; versus the adverse effect those medications could have on Lisa’s Long QT syndrome, which was the cause of Lisa’s cardiac arrest. Dr. Kwasnika acknowledged Lisa’s implanted cardioverter-defibrillator, the continual monitoring of her electro lights and the potassium/magnesium regimen. Dr. Kwasnika has agreed to further consultation with her cardiologist to explore the introduction of anti-spasticity medications.

I like the way this going now, how about you?

Michael (mlwintory@msn.com)




P.S. After more thought, Richard (during the time he is in Oklahoma) has decided to leave Michael in Arizona with Sherry and me in order for us to maintain Michael’s weekend trips to be with his Mother in Phoenix.

MSNMember.msn.com

MSNMember.msn.com

LISA TODAY

May 9, 2006

Phoenix, AZ
Oklahoma City, OK
Tulsa, OK
Galesburg, IL

Lisa’s story turned six-days ago on May the 3rd when Connie and Maureen therapists told Richard that Lisa was answering increasingly more complex and difficult questions (with head nods and shakes). Further, she answered quickly and consistently, thereby reached a new and higher achievement level in her rehabilitation.

Maureen and Connie were well prepared for what was coming next; so with Connie supporting Lisa, Maureen asked, “Lisa, do you understand what happened to you? Then, Lisa, who was quite awake and alert, promptly replied, “No” (with a negative head movement). And, so Ladies and Gentlemen, that was how and when Lisa first comprehended the significance of the cardiac arrest she suffered. Also, Maureen was determined to maintain the high level of trust between her and her patient, so she kept the information that Lisa received factual and straight forward Lisa’s situation was factually explained to her in detail.

Do you realize what just happened? Lisa understood them. That word, “understood” is a good news word as it indicates that important parts of her brain are in good shape and that the therapists believed, Richard was told, "... with hard work Lisa was going to make a good recovery." (You will find out later, if Lisa is buying in to this or not.) Maureen then asked her if she understood what she was being told and once again Lisa replied, “Yes” indicating, I understand what happened.

Richard and Lisa’s first conversation since February 23, 2006 the day her cardiac arrest occurred May 03, 06. It was truly a breakthrough day for all concerned. Richard was able to resume a conversation with Lisa that dates back to the day of her cardiac arrest. Their discussion had to do with an obligation of Richard’s to retry a death penalty case for the family of Debra Sue Carter who, in 1982, was murdered in Ada, Oklahoma. While in any other context this would be a private conversation between a husband and wife, its details reveal that Lisa’s memory, values, judgment, and fierce determination to be a mother to her son are completely intact.

Richard first asked if she recalled their conversation about Richard going to Ada to retry the murder case. Lisa immediately nodded. “Yes.” He continued, “Is it still okay for me to go back and do this?” Lisa again nodded “Yes.” “Honey," Richard said, "I want to talk with you about taking care of Michael during the trial. Is that okay?” Lisa nodes “Yes.” Then Richard asks, what he embarrassingly admits was a poor question, “Sweetheart, Dad and Sherry have been taking care of Michael, and will keep taking care of him, is that okay?” Lisa emphatically nods “No.” Connie, herself a Mother, and-just as important-not a lawyer, interjects, and says, “That was a bad question. I don’t think that Lisa understood.” So, Connie clarified that Sherry and Dad care for Michael during the day while Richard is at work, and when he’s in Phoenix with you; and it is only temporary... until you get strong enough to return home.” Connie then asks, “Is that okay?” This time Lisa nods, “Yes.” Then, Richard said, “… because Honey, you and I are going to raise this boy…” And before he could complete his sentence, Lisa interrupts Richard with an emphatic “Yes ” Later in the conversation Lisa indicated she wanted more time to think about the situation.

While other decisions remain for Lisa and Richard, another conversation with Maureen and Connie confirmed that Lisa has been left with her spunk and red headed attitude intact. Then, nearing the end of this grueling therapy session, Connie tells Lisa, “We have 10 minutes left in your session, and I’m going to give you a choice. You can have a lemon pop to suck on (the lemon juice soaked cotton swab is no small temptation for a dry-mouthed patient in rehab.) or you can work your torso. To pick the lemon pop just look over to where they are on the counter, to pick the exercise start moving your torso”

Those who know (or have come to know) Lisa won’t be surprised to read she immediately started moving her upper body. Connie, though, wanted be sure. “Lisa I need to know you made a choice. Would you please look over at the lemon pops just to show me you can?” Lisa stops moving, raises her eyebrows in disdain and stabs a look over at the lemon pops and back towards Connie, than without missing a beat, begins moving her torso again. Message received, Lisa you’re want to come home; the lemon pops can wait!

Bruce Bowers, one of Lisa’s Rangers, volunteers to provide Lisa with range-of-motion therapy. Bruce is a true friend to Lisa and Richard. Here is part of an e-mail he sent to Richard after midnight on the 3rd of May. I provide it so you can appreciate the unsung impact of his and other Lisa’s Rangers are making to assure her future well being.

Bruce writes: “Lisa has casts on both legs (from a little below the knees to 3/4s the way down on her feet)--these are to help with the foot drop-- and braces on both arms. These were new since we saw her last week. When we arrived, her base pulse rate was 105. We dispensed with the elbow extensions because of the braces--it looks like their purpose is to keep her arms extended. We did three reps of the arm raising with each arm, 3 minutes per rep. Her right shoulder seemed to be tighter than her left and her pulse went higher with the right arm, especially on the first rep. We also did three reps of 3 minutes at each stop for her legs. She did very well with everything with her legs--great hip rotation and very relaxed throughout the entire range of motion. She actually fell asleep while we were doing her legs and her pulse rate went down to 78 for a bit. She was alert when we first got there and blinked her eyes in response to questions. There are a bunch of birthday cards from family, friends and her nephew's class in school on the walls. It was an encouraging evening. BWB”

So Sherry, baby Michael and I rolled out of Oro Valley, AZ on Tuesday April 25th for Galesburg, Illinois, we retuned on Friday, May 6th. In that time, we drove 3,600 miles in our motor home, signed a listing with Century 21 to sell our house, gave a ton of stuff to the Galesburg Rescue Mission to get the house ready to show, said our goodbyes, introduced Michael to his Grandmother Beverly with Laura's support and assistance, had a gathering of Sherry's daughters and their families: Kevin and Dana Smith and their kid’s Allison and Andrew (they drove down from Minneapolis, MN); Barry and Kris Hitchens and their twins, Carly and Cooper (they drove up from Decatur, IL), Laura and her husband James, who lost his father during this time, were of immeasurable help to us, and I need to thank them for their wonderful help, we got the RV serviced and headed back to Arizona by way of Tulsa and Oklahoma City.

In Tulsa, we introduced Michael to Nicol and Donna Wintory, my brother and sister-in-law. They drove to Tulsa from Ft. Smith, Arkansas and rendezvoused with us for lunch. They fell in love with Michael, and I must say it was a wonderful to see them again.

Next we drove Midwest City, OK. Unfortunately, we were 3-hours late getting to the Hampton Inn. In spite of our tardiness, we were greeted with a marvelous reception that Jack and Napua Davis arranged. We were very, much honored to meet the 40 to 50 friends, relatives, and colleagues of Lisa and Richard who gathered to meet Michael. For Sherry and me, it was especially nice to see Suzanne and Collin Goodspeed again. We met them at Lisa and Richard’s wedding and again at Wintory’s in AZ. Lisa’s brother David, sadly, was called to Atlanta on business the day we arrived so we missed seeing him. Everyone was completely taken by Michael. He quickly got into being the center of attention and was content to be admired, held and cuddled by most everyone there. Napua prepared wonderful Hors D’oeuvres in the form of southern fried chicken and finger-licking-good, short ribs, and more for the guests to enjoy, and lucky they did because we were horribly late in getting there. Jack and Napua are gracious and kind. We spent the night at the Hampton Inn and woke to find biscuits & gravy and fresh hot coffee, mmmmmm good way to start the rest of our journey

Richard called us while we were en-route and asked us to bring Michael to Phoenix on our way home. He was there with Lisa After, some grumbling on my part, we did and I’m glad we did because Richard was really excited to see his son. Then on Sunday, Jim and Ann Peterson (who had been caring for Maggie) drove Lisa’s dog to visit Lisa; making Richard birthday May 7th the first time since Feb 23rd that they Richard’s family were together. It was a very happy weekend for them and Maggie.


Michael
Oro Valley, AZ
mlwintory@msn.com

Napua & Jack Davis, and the "Reception Committee" are from Linda Thompson. Sherry's daughters and grandkids: Kris & Dana w/Michael, Cooper (8) Andrew (6) Carly (8) and Allison (9).

Thank You for the Birthday Cards

Dear Family and Friends of Lisa, Richard and Baby Michael Gene,

Thank you so much for all the beautiful cards, notes, and flowers you sent to Lisa to celebrate her 40th birthday. Carmen and Richard (as well as we) have been moved by your expressions of support, love, and encouragement for Lisa as she continues working toward recovery. Your overwhelming kindness and thoughtfulness are on full display on all four walls in Lisa's hospital room, considerably warming and brightening what otherwise could be a very humdrum and drab hospital room. As you can see for yourselves in the photo, among the room brighteners is a group of very creative original cards from Lisa's nephew, Collin, and his entire 5th grade class in Norman, Oklahoma. Not to be outdone, Collin's 3-year-old sister, Rylee, signed and sent her own special card.

We arrived on Monday and were sooo encouraged with the progress Lisa has made since we last saw her three weeks ago. She is in speech therapy for an hour each day and then, later in the day, in occupational and physical therapy for another hour. Her speech therapist is very pleased with her ability to answer questions, usually by nodding her head yes or no. And the occupational and physical therapists are also very pleased with the progress she is making in reestablishing control of her muscles. For instance, on Wednesday (May 3) they used an apparatus which required Lisa to stand by herself. In addition to standing, she was also able to shift her weight from one foot to the other on her own with no help from the therapists while on the apparatus.

Carmen has gotten in the habit of spending an hour or so with Lisa under the shade trees outside the hospital in a wheel chair between sessions with the therapists. She also takes her outside again in the late afternoon or early evening for another hour. The trips outside give Lisa a change of scenery with different sounds and smells to help reawaken all of her senses.

Thank you again.

Gratefully,
Shaggy and Rex