Today is the first Monday of 2010, a new year, and hopefully a much better one. For us, 2009 was like two different years. The first half was a time great anticipation. The boys were going to move out and live on their own. Katka and I had plans of our own … and then on June 13^th everything changed. On the day Honza was injured life as we knew it ended. It was sudden, shocking, and overwhelming. The time since then has flown by, but in a distorted, weird, stressful kind of way. Caring for a quadriplegic is 24×7 job. His needs trump every single aspect of life.  It’s a difficult thing to get used to. Along with Honza’s care, there is a never-ending stream of visitors coming and going, forms to fill out, appointments to schedule, phone calls to make or answer, research to do, programs and grants to apply for.  The days are so busy, so overwhelming, and yet so much the same that they seem to merge and sometimes we lose track of the time, the date, even the day of the week. Instead, we measure time in terms of when the next round of meds are due, when the therapists are going to arrive or when it is time to do Honza’s bowel program. It is a strange existence.

Hopefully, that will help explain why it has been so long since we have updated the website. Honza was released from the Santa Clara Valley Medical Center Rehabilitation unit on November 23, and came home to Stephen’s little house in Santa Rosa. Santa Clara did as well as they could to train us for what was to come, but in no way were we really prepared. Living with a quadriplegic (especially in a house that could best be described as “disability hostile”) is a challenge … to put it mildly.

Catching up

As I mentioned earlier, Honza came home just before Thanksgiving after spending 8 weeks in the spinal cord injury rehabilitation center at Santa Clara Valley Medical Center. I think a lot of people (us included) misunderstand the function of a rehabilitation facility. Their mission is NOT to medically improve the condition of their patients. Rather, the objective is the train the patients themselves and their caregivers (family, friends or professionals) HOW to function as well as possible with their disability.

For the first part of his stay at Santa Clara most of the focus was on Honza himself. Getting him medically stable, completely healing his pressure wound, weaning him from his trachea and his feeding tube, and getting him up and out of bed. And those efforts were quite successful. After a month at Santa Clara, Honza had his trachea and his feeding tubes removed and was eating and breathing normally. Then the focus shifted to trying various medications and therapies to maximize his functional movement so they could determine what kind of wheelchair and other equipment he would need. Honza made great progress during those weeks. He was with others who had suffered similar injuries and the staff at SCVMC were top notch.

We think Honza would have benefited greatly from spending more time at Santa Clara. In fact, we interviewed many former patients who stayed an average of 6 months or more, but sadly with current health care crisis in this country, the emphasis is on getting patients out of the hospital as quickly as possible.  Even in the short time he was there, Honza began to regain some movement and control in his right hand, almost enough to reliably operate a joystick on a powered wheelchair but he suffered from random spasms that would cause him to lose control. Even so, after four weeks, the focus shifted away from in-patient rehabilitation and therapy to preparing Honza (and us) for him to come home. And that proved to be a rocky road indeed.  Since his injury, Honza had been cared for by medical professionals. Now he was going to have to be dependent on his family and friends for his most intimate needs and care. He was humiliated and angry. He made it very hard on everyone and his release from Santa Clara was delayed several times because the staff felt he was not ready to be released. Finally, he was released on November 23.

The Home Front

Stephen’s house is really small and can best be described as “handicapped hostile”. The floor plan is relatively open but the doorways are small and Honza’s powered chair is large. It makes for some tight maneuvering.  Even with one bedroom completely devoted to Honza, there are medical supplies stuffed in just about every corner. The spare wheelchair sits in the kitchen. CA Children’s Services is paying for in-patient therapy from two wonderful therapists who come twice a week, but that will end in January. We are not sure what will happen next but we are determined that Honza get the best therapy as often as possible. We also are hoping he will find the motivation to go back to school. We have found two caregivers who each come three days a week but we are not sure how much longer we can pay for them unless we qualify for In Home Support Services from the state. Dr. Brian Schmidt who oversaw Honza’s care at Memorial has been a godsend. He has visited Honza several times and has basically taken on the role of his personal physician. We can’t thank him enough. And there is a constant stream of social workers, MediCAL case workers, alternative therapy practitioners, and equipment vendors and installers cycling through. Honza’s friends also come by often and that’s a good thing… but privacy and peace are distant memories.

The physical work of caring for Honza is hard. He is a big boy. Turning him, moving him from his bed to his chair and back again is hard on our middle-aged backs. But the mental and emotional toll is higher. Honza is struggling with accepting life as it is now. He has little control over his life which makes him fight for every bit he can. Since, he has so little that he can positively control, many of his attempts to control things are negative such as being uncooperative or unresponsive. From research and counseling sessions with mental health professionals we know that he is suffering from post traumatic stress and feeling grief over the terrible loss he has experienced.  We are seeing a very good psychologist who we believe is slowly gaining Honza’s trust, but on some days the stress and tension on top of his care giving is almost to much to bear.

What makes it bearable, are the many friends and members of the community who have stepped up to help. First among them is Honza’s girlfriend, Brianna Angell. Since the day he was injured Brianna has been a tower of strength and energy. She has been instrumental in his fundraisers. She comes to visit Honza almost every day. She has learned practically every aspect of his care giving. And she does it all with a smile and a positive attitude which is an inspiration to us all. What a girl!

And of course, such a great girl must have great parents. Brad and Karan Angell have been as supportive to Katka and Stephen as Brianna has been to Honza. They have also been very involved in the fundraising efforts and have opened up their house and heart to us.  So to have Grady and Jane Wann. Grady (Honza’s former golf coach) has been working with Stephen on the Honza Ripa Special Needs Trust and was kind enough to lend Katka one of their cars for two weeks when Katka’s car was totaled in an accident on 101 (not her fault and fortunately she was not injured). And both Grady and Jane are also learning how to be caregivers for Honza and show up once or twice every week to give Stephen and Katka a break. And last but not least, Katka’s sister, Dr. Tereza Hubkova, has been amazingly generous and supportive, having traveled here from Massachusetts a half-dozen times, paid for alternative therapies, researched new treatments and sent us tons of items to help in his recovery.

Hopes for 2010

We didn’t go out this New Year’s Eve. Didn’t feel much like celebrating.  And we are keeping our hopes modest for 2010. We hope Honza continues to make progress in his recovery. We hope we can raise enough money to pay for his daily care, buy a wheelchair accessible vehicle and maybe pay some promising new treatment or therapy. We hope that his mental and emotional state improves and that he can again find joy and a zest for life. And we hope that all of you who have somehow found the time and energy to help us, have a happy, healthy and secure 2010. Please, be good to yourself and to each other so that the world becomes a better place for all of us.

Katka, Stephen, Vojta, Honza

P.S. A personal note from Katka

If you will allow me, I want to express my deep appreciation to my partner, Stephen, who has stood by me and been as equally involved as I am. Every single day, dawn to dusk… trying to find help… looking for solutions… making tons of phone calls…going on car trips…having very little time for himself and his own family he deeply loves and misses. Thank you. There are not many people like you, Stephen. I love you very much. I was lucky to have met you, so were my boys.

Katka

Honza’s Progress

Honza has been making substantial progress on many fronts while at Santa Clara. First some really good news: On Monday, Oct. 26^th, Honza had his tracheostomy removed! He has recovered enough strength and capacity in his lungs so that he no longer needs it. He is also showing good appetite and eating well, although he definitely prefers home-cooked or take-out restaurant food to hospital food. Who doesn’t? The doctors have also removed his feeding tube and he is now eating, breathing and talking normally! These are all huge advances. He now spends hours talking on the phone with his friends and last week when we visited, he wolfed down two soft tacos from Baja Fresh. The improvements in his physical condition, regular counseling sessions with the staff psychologist at Santa Clara and weekly peer support group meetings with others who have suffered similar injuries have greatly improved Honza’s mental outlook.

However, developments on the mobility and movement side have been more spotty and challenging. It’s been a sort of “good vs. evil” battle. In this case, it’s the good muscles vs. the bad muscles. Honza has some strength and control in his right hand and fingers and his right biceps muscles. Those are the good guys.  However, he also has what the doctors call “spasticity” in his right wrist tendons and the triceps muscle in his right arm. The spastic muscles are the bad guys because they can uncontrollably and forcibly contract, inhibiting his ability to control the good muscles.

The spasticity is more or less of an issue in his whole body. The spasms are also painful for Honza as they sometimes contort his body and limbs into uncomfortable and awkward positions. The challenge is to inhibit and weaken the “bad guys” so that Honza can strengthen and extend his control of the “good guys”. The doctors are trying several systemic drugs to control his whole body spasticity, and last week tried local injections of Botox to weaken the spastic muscles in his right arm, so that Honza can strengthen and gain more control over his right biceps and the fingers of his right hand. Doing so is of huge importance, because if he can reliably control his right hand, then he can manipulate a joystick controller on a motorized wheelchair. If he can do this, then he will be able to control his own mobility. He had some success last week in doing so, but he’s had some crashes too, when he can’t quite get his hand to do what he wants it to do because of the spasticity. He is like student driver, trying to learn to drive, while someone is uncontrollably jerking the wheel. He can’t dependably control the chair yet, but we are all hopeful he can get there with the proper medication and therapy. And his progress will largely determine how long he stays at Santa Clara. If he shows consistent improvement he will stay longer. If he is unable to progress then Santa Clara will declare his rehab has gone as far as it can and he will be discharged.

His other major physical therapy objective is keeping his joints and muscles from becoming stiff and inflexible. For this the nurses, strap Honza into a “spinning” machine which moves his arms and legs slowly in a kind of a half-jogging, half-riding a bicycle motion, stretching and relaxing his joints and muscles while hopefully stimulating his brain and spinal cord to remember, “Hey, I used to do this.” We have read that Christopher Reeve was a big believer in this type of therapy and believe it directly contributed to his regaining movement and control in his wrists some seven years after his accident.

The Home Front

We have started preparing the house for Honza to come home. He will need a special hospital bed and mattress to prevent pressure wounds and a hydraulic lift to get in and out of bed since he is too big and heavy to lift by hand. He will have a motorized wheelchair and we will build a ramp so he can wheel in and out of the house. Everything but the ramp will be paid for by CA Child Services. We will have to pay for the ramp since CCS and MediCal doesn’t pay for permanent home modifications. Those are the only immediate modifications needed for the house. Initially, his bathing and bodily function care will have to be done from his bed. Eventually the ideal situation would be for him to have a wheelchair accessible shower and commode. But that is not possible in Stephen’s little house, so we will make do for now.

So, the crucial necessities will be there, but there are many other things we’d like to have that he’s currently using at Santa Clara. Honza can talk on the phone with a headset but he can’t dial or answer it himself, so he needs a voice activated and controlled phone so he can make and answer calls. The rooms in Santa Clara are equipped with flat screen TVs that are mounted on arms that attach to the bed and have simple remotes that can be controlled with one finger. They also have voice-operated computers. We would like to provide Honza all of these things, so he can have as much control over his life and as stimulating an environment as possible. Any help would be appreciated.

We have also started investigating wheelchair accessible vehicles. The choices are pretty much limited to full size vans, mini-vans and recently, some specialty vehicles like the Honda Element. We aren’t sure whether it’s better and more cost effective to buy a suitable vehicle and have it modified to his needs or to buy a vehicle that has already been modified by one of the companies that specializes in these vehicles. One thing we have learned is that these vehicles are costly! So, if anyone has some leads or advice on obtaining one of these vehicles, please contact us.

Finally, we are actively searching for and interviewing for personal care assistants experienced in caring for someone in Honza’s condition. Katka and Stephen both work, so we need essentially full time help and are looking for one or more people who can provide the necessary coverage. If you know of a good reliable, responsible person who would be interested, please contact us. We are open to any age, race, gender, etc. but since his needs are so personal and intimate, it’s really going to be Honza’s choice based on who he is compatible and comfortable with.

Sorry, for the long post, but there was a lot to share. We will post more regularly in the future so that we can keep them more up to date and shorter.

-          Katka, Vojta, Honza, Stephen

Now, he can restart the process of getting acclimated to the wheelchair again. As soon as he can be the chair for 3 consecutive hours with no ill effects, he will be transferred to the rehabilitation unit to begin his rehab in earnest.

In other news the doctors at Santa Clara think Honza’s lung function is strong enough now that they can remove his tracheostomy. This is great news. He can breathe and talk like normal!  No more breathing through a tube stuck in a hole in his throat. The plan is to wean him off the trach over a period of week or so and then remove it.  The doctors at Santa Clara also think they have a handle on what’s been causing difficulties with Honza’s bladder and catheter. It’s not uncommon for people in Honza’s condition to have calcium leach out of the bones and enter the blood and urine. This is what was causing the stones and sediment in his urine and clogging his catheter. They think it can be controlled with medication and by closely managing his hydration.

Team meeting

Last Friday, we had our first “team meeting” with the staff at Santa Clara Valley Rehab Center. It was impressive. Katka, Stephen, Honza, two doctors (both the attending physician and resident), his occupational therapist, psychologist, case manager and a nurse or two were all crammed into his hospital room. Each person talked about their specific treatment for Honza. The short term goal was to get his medical condition stable and up to Santa Clara’s standards so he could be transferred from the trauma unit to the rehab unit. Then they outlined the program goals and timeline for his rehabilitation.

One huge difference from Memorial is that the meeting was held in Honza’s room and he was a full participant in the meeting. Each staff member addressed his or her comments to Honza and checked with Honza to see if he understood, had questions, and agreed with the plan.  It’s clear that Santa Clara is much attuned to the key role the patient has to play in their own recovery and rehabilitation. It was good to see.

After that, there was a lot of discussion about what happens after Honza completes rehab and is ready to come home. That part of the meeting was daunting to say the least. It was the first time we really had to come to grips with the enormity of the task ahead. We left thinking… and have been thinking all week. Oh my god! How are we going to do all of this? Where are we going to find the time, and the money, and the people? Santa Clara will help and they will hook us up with local resources but still it all looks so intimidating and scary.

The staff talked about making the house handicapped accessible, transportation (they strongly recommended acquiring a wheelchair accessible vehicle) and the amount of care Honza is going to need. Basically, barring a dramatic change in his physical condition, he is going to require 24/7 attendance and care. We are going to have to undergo extensive training ourselves in how to care for him. But even if we wanted to, we couldn’t do it all ourselves. We are going to have to find, interview, screen and hire “personal care assistants” to be with him and care for him so we can continue to work and his brother Vojta can continue his college education. And what happens when we want to have a night out or go on vacation? We simply don’t know yet. We do know that we will continue to have the help and support of many in the community and of our friends and family and somehow or another we will figure it out.

-          Honza, Vojta, Katka, Stephen

P.S. Visiting Honza

Santa Clara provides very reasonable accommodations for family and friends of patients who want to stay overnight or through the weekend. There are four one BR suites with full kitchen, bath , TV and DVD player within easy walking distance of the hospital. Each suite has a pull out convertible couch in the living room, so they can sleep up to four. We stayed in one last weekend. Nothing fancy, but they are relatively new, clean and nice. The only downside is there is construction going on close by, but that’s not much of a problem on the weekends. In any case, you can’t beat the price of $30 per night. Reservations required on a first come-first served basis. Call 1-408-885-7995.

Dr. Mark Nguyen and Dr. Marsha Bluto are his new “bosses.” So far we are impressed in that they really seem to be knowledgeable and have confirmed some things we suspected. For instance that his lack of appetite and nausea may be because he was being overfed through his feeding tube (in attempt to load him with nutrition to support healing of the bedsore). Honza passed his swallowing test, so now he will only be tube-fed at night and will eat regular food in the daytime until he is strong enough to forego the feeding tube entirely. They said his respiratory functioning is adequate and there’s a good chance he can do without a trach as he gets stronger. And the doctors agreed he had spent far too much time in bed and hadn’t gotten nearly enough physical therapy which was contributing to his body being tense, achy and overly sensitive to touch.  When they are satisfied that everything is under control and Honza is stable and able to tolerate 3 hours of “exercise” in the wheelchair, they will transfer him to the rehab unit where he can begin actual rehabilitation.

But even though he’s not yet officially in rehab, we can already see positive changes. Honza has his speaking valve in most of the time now. So, communicating with him is much easier. He can even talk on the phone now. Yesterday, one of his best friends called him from Germany, and they talked for a long time, even sharing some laughs. It was great to see. So, now you can call as well as write. He loves to get cards and letters too. Here is his new mailing address. They always cheer him up, so please, drop him a line.

Santa Clara Valley Medical Center
Rehab Trauma Unit #2K121
751 South Bascom Ave
San Jose, Ca 95128
Ph 1-408-885-2229

Honza also enjoys having visitors, although it’s a good idea to call first. Daily visiting hours are noon-8pm. Weekend visiting hours are more flexible. If you would like to visit Honza, but need a ride back and forth to Santa Clara, give us a call and we’ll try to work something out.

Some helpful hints

The hospital campus is large and there is lot of construction going on. But there are numerous kiosks with “you are here” location maps. The rehab trauma unit is in building K, 2nd floor. However, we expect that in another week or so, he will be transferred to the rehab unit, which is in building F, ground floor.

The best access is from South Bascom Ave.  Park in the multilevel parking garage located in the center of the complex. The drive doesn’t take more than two hours, but still, it is quite a drive. We will be visiting most weekends and would be happy to carpool with others if possible. There are simple but affordable accommodations on the hospital campus that are available to family (and friends) that can be reserved on a first-come, first-served basis.

A final note

It was so great to see Honza genuinely laughing at his last day at Memorial “party”. Thank you, to everyone who came to say goodbye that night.

H, V, K and Stephen

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We have heard this so many times before we are in the mode of “I’ll believe it when I see it.”Nevertheless, he is scheduled to be transferred from Memorial to Santa Clara on Thursday, Sept. 24th. Katka will be going with him and staying at least overnight. We will write another update when she returns with her first impressions of Santa Clara. The rest of this update was written before we learned that his transfer was actually scheduled.

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Honza has been making great progress in being able to be taken out of bed and placed in a specialized wheelchair that can support him. He can sit in the chair for about 1 ½ hours now. It’s quite a project to get him out of bed. First they tried to use a kind of hydraulic lifting device, but strapping him in and lifting him that way was very painful for him. The hospital staff found it was much easier to just kind of lift him by hand and gently place him in the chair… but it takes 3 people to do it! We wonder how we will handle it when he gets home. But, what a great thing it is for him to finally be able to get out of bed. Yesterday, he was outside the hospital walls for the first time since he was admitted in mid-June!  Breathing fresh air, feeling the sunshine on his cheeks. He wanted to see the REACH helicopter landing on the roof. We realized he had never seen the hospital from the outside and didn’t really know where he had been all this time.

The nurses and doctors check the wound before and after each session in the wheelchair. So far, it’s looking good and hasn’t caused any problems or showed any signs of re-opening. Santa Clara sent a nurse on Monday, to evaluate Honza for transfer to Santa Clara, and it looks good pending approval of some paperwork from California Children’s Services. We are anxiously awaiting that, because it was a paperwork hold-up that delayed his transfer months ago and the delay is what enabled the pressure wound to develop in the first place. Hopefully, it will be done quickly this time and he can be transferred early next week.

Thanks to a good cooperation between Honza’s Aunt Tereza (she is an M.D.) Stephen and Dr. Brian Schmidt (who is overseeing Honza’s care at Memorial) Honza has been prescribed a new medication, that should help reduce some of his nerve sensitivity, muscle spasticity and nausea while stimulating his appetite.  He actually asked for some solid food the other night which is a great sign. We hope for more food requests like it used to be at home. “What’s for dinner?” “Can I eat this?” Do we have any more?”

I realize that there are still many people, even friends and acquaintances, I bump into around town, who have not heard what happened to our family. I wish there was a way I could somehow get out the word to everyone. Because the more people know and talk about it, the more likely it is that some helpful idea, person, or research will surface that will prove vital in Honza’s recovery. This has already happened several times and we are always open to anything that might help.

K V H and Stephen

Katerina

One immediate benefit of the wound healing is that yesterday, Honza was transferred from the vibrating, forced-air bed to a new soft foam bed where he can easily be elevated. You could not believe the difference it makes! The old bed was very noisy. Now his room is so much quieter and more peaceful. Finally, you can hear you own voice while being there and we can read aloud to him without having to almost shout to be heard.

Now the physical therapists can position Honza so he is sitting almost “upright” and move him to a declined wheelchair for a few minutes each day. Once he can tolerate sitting for at least two hours, without the site of the bed sore being affected, he can be transfered to Santa Clara to begin rehabilitation.

Also on the positive front, last weekend, Honza’s Aunt Tereza from Massachusetts visited. Tereza is a M.D. She did some great research she shared with the doctors at Memorial that resulted in them making changes in Honza’s  nutrition and medications which should help reduce some of the problems he has been having with his digestive system and urinary tract.  Thank you so much, Tereza. We are so fortunate to  have you!

We know these are small steps, but after so much time of making little or no progress, moving forward feels great!

Katka, Vojta, Honza and Stephen ]]> http://honzaripa.org/?feed=rss2&p=101 11 http://honzaripa.org/?p=96 http://honzaripa.org/?p=96#comments Fri, 11 Sep 2009 04:14:01 +0000 admin http://honzaripa.org/?p=96 First off we would like to apologize. This update is almost a week late. We know that many of you log on regularly and wait for each new update.  It’s late not because we have been so busy, or there is so much new to report. Rather it’s just the opposite…

Katka speaks:

It is September. Most of Honza’s friends are back to school… college, JC, or their last year in high school. They are excited about the changes in their lives, new school year, new friends, new challenges, new schedules, new environment… And they are so great and do keep visiting Honza in his hospital room, where we encounter the opposite. Each day is the same, same room, same walls, same bed, same schedule, nurses walking in and out throughout the day, treaments, meds….a few visitors.. It’s been 3 months now. Will it ever change? That and other questions must be on Honza’s mind a lot. “What does my future hold?” “Will I ever be able to move? How will be my “new” life? How will I overcome this huge change? Will I ever … ?” I wake up with similar thoughts myself about my son. The weight of the fear seems often unbearable. How much more intense must be his own fears and feelings? I simply can not imagine.

We are facing the harshness of reality. No real improvements. No real changes. The nausea, the pain medications, the muscle spasms, tubes coming in/out ,the noisy machines 24 hours/day… The only progress is that the pressure sore seems to be healing and even that is painfully slow. I know, we have written about all this before. Well, it is just the facts. Weeks seem to resemble one another sometimes. Honza needs change of environment, peer support, exerrcise, plan, hope, psychological support… We all do. We really hope it will happen soon.

Thank you for staying with us on this long journey.

Katka, Vojta, Honza and Stephen

We are currently reading the Paralysis Resource Guide, a book published by the Dana and Christopher Reeve Foundation. The books purpose is to inform and educate about paralysis and its affects, and offer a comprehensive catalog of the available resources. The reason we mention the book is because we were struck by a citation from Dana Reeves at the beginning of the book, because it so accurately describes what we are experiencing… and it is some comfort to know we are not alone and not crazy.

“When someone is first injured, it’s very disorienting.” “It’s doubly difficult because right after a spinal cord injury there are so many medical problems that crop up. Immediately, the body is bombarded with infections… urinary tract infections, pneumonia, skin breakdown. It can look very bleak and overwhelming. And yet, if you can focus on one thing at a time, such as the person needing to get well or being healthy enough to rehabilitate, a great deal of hope can come from that focus. Once you get to that phase, there will be much forward progress.”

We are not there yet. But we are focused on that goal.

Honza’s Medical Condition

Dana Reeve’s comment is all too familiar to us. The latest “complication” is that Honza is suffering from chronic urinary tract infections which cause him extreme discomfort. While, they are relatively common in patients in Honza’s condition, what is uncommon in his case, is how quickly they return after treatment with antibiotics. However, during a “CATSCAN” which is part of his normal routine, doctors discovered that Honza has developed both kidney and bladder stones! Geez, give the kid a break! According to the doctors, the bacteria can “hide out” in the stones. So, they decided to perform a “scope” to remove the stones and flush out his bladder in the hope that will reduce the incidence of urinary tract infections. We’ll keep our fingers crossed.

Re: his pressure wound: According to the doctors and the head “wound nurse” the pressure sore is very close to healing. The wound is smaller and the deeper layers of dermal and muscle tissue has healed. It just needs to form an epithelial layer to cover the site and prevent any bacteria from re-entering. Once that happens, the next step is for the physical therapists to place Honza in the sitting position while carefully watching the wound site. Other than the bi-hourly shifting of his prone position from one side to the other, it will be his first position change in 10 weeks!  The goal is to increase the amount of time he can sit up each day till he can sit in a wheelchair for 2-3 hours at a time. When he can do that, he will be ready to go to rehabilitation in Santa Clara. How fast that happens will depend on his pain tolerance and wound status. We do hope to be close to the end of his Memorial hospital stay.

Honza is also fighting strong muscle spasms in his arms and legs – what the physical therapists call “abnormal muscle tone”. The brain isn’t sending a signal to contract but somehow the spinal cord injury causes a mix-up in the nervous system and the muscle thinks it is getting a message to contract which causes the muscles to tighten an stiffen. It’s another common problem in paralysis that can be triggered by a simple touch and be extremely painful for Honza, which compromises his physical therapy.

Well that’s the latest. Once again, we want to express our thanks and appreciation for all your cards, letters, fund raising efforts, donations, for sharing your own personal stories with us.

Katerina, Vojta, Honza and Stephen

This week, I received a collection of personal stories written by my sister Tereza, an M.D. trained in Prague and Boston, MA.  The stories relate her experiences from years of practicing medicine in a traditional hospital environment. In them, Tereza reveals how she became convinced that a more holistic approach to medical care is needed.  Tereza believes in the need to not only treat the body, but also the mind and the spirit. She has been mobilizing resources from all over the country to assist Honza’s recovery using non-traditional means to help his mind and spirit heal, as well as his body.  We are very supportive of these efforts and would welcome those with expertise in these areas to contact us if you would like to help.

On the medical front, the doctors tell us that the pressure wound is almost healed. They think maybe another 7-10 days and it will be fully healed, and he will be ready to be transferred to the Santa Clara rehabilitation center. We hope they are right this time…

Other than that there is nothing much new or different to report. Physical therapy continues and Honza shows slight improvements in range of motion but still isn’t capable of what the therapists call “functional movement”. I.E. the ability to move any of his limbs with enough control to perform some function, such as pressing a button, or moving a mouse. He is slowly but surely eating more, but continues to suffer occasional bouts of nausea and is not eating enough to get all the nourishment he needs, so he is still on a feeding tube.

An upcoming fundraiser event: a special yoga class lead by Nancy and Jenn at Parkpoint Health Club in Healdsburg with a potluck following, will be held on Friday Aug. 28th  from 5:30 to 7:00 PM.

Katka is working on an editorial for the Healdsburg Tribune to thank the community for all they have done, which should be published in the near future. ]]> http://honzaripa.org/?feed=rss2&p=76 3