Kurt's Coming Home!
After 3 months in the hospital, Kurt is coming home! While this is wonderful news, the next phase of his recovery presents a new set of challenges. Kurt’s health insurance is ending soon. I’m currently looking for work to help support us both. At present, he needs 24-hour care to assist him with the basics of day-to-day living, along with his many physical, occupational and speech therapies. Believe it or not, speech therapy is not considered an essential (and therefore, covered) component of ongoing rehab! Neither is in-home care. Kurt needs some help.
With a leg brace, Kurt is now able to stand for short periods of time, and has begun taking steps with a cane and the help of an assistant. He’s also making steady progress in speech therapy. With time and practice, Kurt has progressed from being able to respond with only “yes” and “no,” to communicating basic ideas with a gradually increasing vocabulary. Not being able to verbally express himself the way he’s used to must be incredibly frustrating for someone like Kurt – one of the most engaged, creative and animated personalities around… but anyone who knows his story knows that he’s already overcome numerous challenges in his life. The amazing thing about Kurt is he never gives up.
Many of you know Kurt through the music he’s been making for more than half of his life. From Six and Violence, to Beyond-o-Matic, Cookin’ with Kurt, SpacEKrafT and other ventures, Kurt’s collaborative and solo projects have ranged from hardcore to space rock and ambient. Not just a musician, his delightfully madcap sensibilities gave us the hilarious late-night local-cable TV show, “Talk to the Hand.”
A huge moment for Kurt was being asked to compose and produce the gorgeously synth-laden soundtrack to the critically-acclaimed film, “Jodorowsky’s Dune,” which was released earlier this year.
Kurt also worked hard in a successful sales career for over twenty years, most recently as vice president of sales for a digital marketing agency.
Most importantly, he’s a devoted father with two beautiful children, Henry (13) and Julia (8). Kurt and I became engaged last year, and I’m so thankful we found each other. I feel honored to be a part of such a loving and creative family.
The road to recovery from a big stroke has no set map. What amazes us all about Kurt is his unfailing optimism and determination to get there, wherever “there” is. He has touched the lives of so many of us, and now is our chance to touch him back (if you know Kurt, you know he’d find that hilarious). Thank you for your love and your support; it really means the world to us.
How you can help…
Some of the things we need help paying for include:
* In-home health aide to help with dressing, bathing,
wheelchair transfers and meal prep
* Ongoing speech, physical and occupational therapies
* Medical appointments and daily medications
* Paratransit services
* Home modifications (ramps, floor decking for outside areas)
I have started a wish list for items we will definitely need. Here are some links for the items below:
iPad - Donated!!! Thank you!!
Drive Medical Deluxe Pivot and Tilt Overbed Table - Donated!! Thank you so much!
Photo Cue Cards - Donated! Many, many thanks!!
STENZOSTRONG bracelets are now available! Please include your address when donating and I will send you one.
It's hard to believe that next month will mark two years since Kurt's stroke. We've learned A LOT - had a few scary moments, many more joyful ones, and everything in between. The only constant is trying to find the time to accomplish as much as I'd like ... including writing regular updates. Facebook is an easy way to share photos and short thoughts, but I want to take a few minutes to paint a better picture of our life at present, and to express my gratitude to everyone who has reached out, included Kurt in their prayers, and helped to support his ongoing recovery. You are truly amazing human beings and wonderful friends.
No doubt about it, 2015 was a challenging year. Like many stroke survivors, Kurt experienced seizures after coming home from the hospital. Medical explanation: as the brain heals, scars form -- this new tissue can trigger abnormal electrical activity that can cause seizures. Or, as one doctor described it, "imagine throwing a hammer into a roomful of criss-crossed electrical lines." Not fun. For a while it seemed as though Kurt was in the ER every other week. He kept a brave face, but it broke my heart knowing how vulnerable and anxious he felt. Meanwhile, the doctors continued to increase his medication with no apparent results beyond turning him into a zombie. Finally, someone steered us to the neurology clinic at UCSF, where they took the time to get to know Kurt, thoughtfully assess his needs, and prescribe the right combination of meds. What a difference. He's now been seizure-free for over six months and his recovery is going stronger than ever.
Kurt is now able to walk moderate distances with a quad cane, and has recently started a new round of physical therapy. He's focusing on core strength, increasing control over his right leg, and becoming more independent with everyday activities. He's also beginning to have some movement in his right arm and hand, which came as a surprise. Interestingly, this started not long after we set up his music studio and he began playing his keyboards again. Although he's only playing with his left hand for now, Kurt says it's doing double duty.
You may have guessed that Kurt's biggest priority is getting his speech back. He has expressive aphasia, which means that he can read and understand speech easily (input), but has a harder time with speaking and writing (output). As a born communicator and storyteller, this has been incredibly frustrating for him; he knows what he wants to say, but there's a disconnect right before it comes out. Fortunately, he's had a wonderful speech therapist for the past year and a half. With her help and encouragement - and lots of daily practice - Kurt is retraining his brain and mouth to work together. He's making short sentences and his vocabulary is growing exponentially. I can't tell you how gratifying it is to hear him talking and laughing with the kids... we've come a long way.
Recovery from stroke takes time and persistence. My goal is to keep Kurt happy, healthy, and getting the kind of regular, intensive therapy that will help him to regain his speech and mobility. Unfortunately, insurance stops paying for therapy long before the need for it ends; most of Kurt's therapies are now paid for out of pocket. I'm currently supporting us both, as well as paying a caregiver to be with him during the day while I'm at work. It's not always easy, but it's getting better - "one day at a time," as Kurt says. I know how blessed we are to have each other, and the beautiful community of family, friends and healers around us. Thank you for being a part of it.
If you'd like to say hi to Kurt, there are lots of ways to be in touch - just drop me a line and I can give you our contact info. We love to Skype and Facetime, and we love in-person visits! You can also join the Facebook group if you're not already a member. Hope to connect with more of you soon. Until then, take good care of yourselves and each other.
Jen & Kurt
Haven't posted since before the holidays, so I hope you all enjoyed a good mix of merry-making and rest. We had a lot to celebrate this year, especially with regard to Kurt's ongoing recovery. On December 15th, a full seven months since his stroke, Kurt independently moved his right leg forward and walked along the handrail in our hallway! He's been working so hard… just amazing - and emotional - to watch him reach that milestone.
Since the beginning of the new year, Kurt's been doing physical and occupational therapies at an outpatient rehab clinic in Berkeley, building his core strength, increasing range of motion, and bearing more weight on his right leg. The big goals are reducing pain and encouraging movement. Ultimately, we want to see Kurt out of his wheelchair and his leg brace. We know it's going to be a long haul, but the progress he's making helps us to stay focused and optimistic.
Speech therapy is also happening three times a week, with two very talented and inspiring speech pathologists. I'm happy (and relieved) to say that Kurt is really coming along in this area, in the past month especially… every day, lots of new and interesting words, short sentences, and self-initiated conversation. Recent phrases include: "I like it a lot," "Slow and steady," "I don't know what to say," "Feeling is coming back strong," "Man, oh man!," "You decide," and my favorite, "Speech is getting better, but my brain is f--ked up." :-) Trust Kurt to tell it like it is! (Actually, I think his brain knows exactly what it's doing - there's just a new "with-it-ness" in the way he interacts, laughs, and in his eyes… the spark is back!)
I want to thank everyone who has reached out to us in the past few months. I can't tell you how touched we both are by your messages of hope and belief in Kurt's recovery. You're a kick-ass cheer squad and we are grateful beyond words. THANK YOU for being there for us!! I'll post a speech therapy video soon; meanwhile, here's the big moment when Kurt started to move his right leg on his own.
It's been a while since I posted an update, and I wanted to share some highlights from the past few weeks. First though, I want to express my sincere gratitude for so many generous donations and encouraging messages. It's hugely comforting to know that people all over are holding us in their hearts and rooting for Kurt's recovery. Thank you all so much. If collective thought has the power to influence outcomes, your positive energy is definitely helping - as Kurt would say, "I never metaphysics I didn't like!" (I know he'll be back to entertaining us with such groan-inducing puns in no time. :-)
Meanwhile, Kurt is making steady strides in both speech and physical therapy. With Kaipo's assistance, he's been using a handrail to practice walking without his leg brace. Our daily routine also includes strength training and stretching exercises. Kurt has recently started to regain control of the muscles in his right hip and upper thigh - exciting news. We're hopeful this trend continues down his leg. Kurt's speech and vocabulary are also improving - he says new words and short phrases everyday, introduces topics independently, has increased focus and recall, etc. It's hard to describe, but everyday Kurt is more… Kurt-like. He's actively trying to make me laugh again, which is hilarious and makes my heart swell 'til it almost bursts.
We've also been enjoying weekends with the kids again - something Kurt really missed when he was in the hospital. The way they've adjusted to our "new normal" is amazing; they're both so relaxed and affectionate and supportive. Kurt and Henry have taken up Jenga, and Kurt's in the lead 7 to 5; my palms sweat when I watch them play, but steady hands clearly run in the family!
Here's a short video of Kurt using the handrail a week ago, and I'll post a Jenga video soon. If you're on Facebook and want more regular posts about Kurt's recovery, please send me a note and I'll add you to the page we created back in May. Much love and thanks to all of you. You are really wonderful and we're blessed to call you friends. Until next time, take care of yourselves and each other.
Wanted to give you all an update on how Kurt's doing since he's been home. I'm happy to say the transition has been so much easier than either of us had anticipated. We're really getting our routine down. It's very peaceful here, so he's finally catching up on some much needed sleep... waking up late, naps, etc. It's wonderful to see Kurt looking so rested and relaxed. In-home therapy has also started and he now has three terrific therapists: Kaipo (physical), Sigal (occupational) and Miriam (speech). Usually the most one can hope for is two sessions per therapy per week, but after their initial evaluations with Kurt, all three therapists requested three sessions per week from his insurance provider. We are thrilled. Miriam saw Kurt twice last week and was amazed by how much he'd improved between just their first and second visits. He's really been doing his homework!
We've also taken some walks to our neighborhood market and to the dog park. Kurt loves being back in the "real world." Today, Henry and Julia spent the afternoon with us and that was a blast. They'll be coming for overnights in a few weeks, so I'm trying to get our place together. It's so good to get back into the swing of things...
I want to give thanks and throw my arms around every single one of you who has donated to Kurt's recovery, sent inspiring and uplifting messages, and shared your funny and beautiful stories about how Kurt has touched your life. I read every single message to Kurt and he's always moved, to laughter or tears... sometimes (usually) both. You are all AMAZING, and we are so very grateful for your love and support.
If you're able to share Kurt's GoFundMe page with friends and family via Facebook and other social media, we would really appreciate it. It could help us reach folks who may not know what happened to him, and where we are now. The link is http://www.gofundme.com/kurtscominghome
I'll keep posting updates here, so please check in on Kurt's progress when you can. 'Til then, take good care of yourselves and each other - we really have so much to be thankful for :)
I need to see Kurt! Please send me the address. Also, words cannot express how beautiful you are, Jennifer. Love you both!
Let me know if you need some synth equipment. I've got a cool midi keyboard, mixer/amp and spare laptop with DAW software to run it all through. While compact you can do some really cool composing/recording with it.
Thank you, Jane and Rog!!!! Much love to you both xxo
Just to make sure three don't arrive at once, Rog and I will donate the iPad.