Hi Jeff. I still remember the morning in the early 00’s when we crossed paths in the parking garage at the Cal Campus and I asked you about your pronounced limp, which I’d never noticed before. I assumed you’d injured yourself and would tell me it was getting better. I clearly recall how matter-of-fact and open you were in sharing with me your new, devastating, diagnosis. And I recall feeling sad that you were going through this and ashamed for having intruded on something so deeply personal. I watched over the next 20 years as you navigated the daily grind we both understand too well, knowing that yours was so much more arduous than mine because of the extra burden you were forced to carry. I always felt a profound respect for how stoically and professionally you did everything that was required of you and more to be the best at what you do, no matter the difficulties. And though we spoke many times, and even socialized occasionally, we never spoke about it again. Having read this story, and gaining even more insight into what this has been like for you, that respect is now deeper than ever. Be well, Jeff, and keep on keeping on. KB
Jeff, thanks for directing me to this piece. Sorry for your dx, that’s shitty. Human of course, but shitty. Dx could be worse, yes? I don’t mean to minimize. At 73 there are still many things I can do, but so many I can’t anymore. I trained as a dancer to qualify for a RDT credential, (Regisgered Dance Therapy). I never attained that credential but did attain other ones. Along with a BSN and MPH, I was able to work as an ergonomist and loved most of those minutes, albeit some fear in high hazard industry.
You have a lovely family. It seems we both live in lovely places, I love Portland. I feel so lucky that my husband and I took the chance to move away from family and locate hear back in the late ‘70’s. It’s spring now and so much is blooming. The air looks and feels like it did in the ‘70’s and ‘80’s although in that far away time it was July or August, now it’s April, not even May. Sigh, our lovely planet.
I will continue to read your stories. I hope you can smell the redwood today, and maybe enjoy a glass of Chalk Hill Chard, or some chilled white cuvée, or a delightful light red, with whatever comes out of your kitchen at dinner.
Hey Beverly! My middle son lives in Portland. He just moved to a new place a few minutes walk from Discovery Park and he hikes every day!
I have been fortunate to find a good trainer who is helping me figure out the best workout that doesn’t burn the muscles out, while still strengthening the ones that are not affected. It’s a delicate dance indeed. My next story is about my Dad and his deployment in 1963 as one of the recovery docs for Gordon Cooper when she splash landed in the Pacific after the last Mercury mission. Hope to publish it soon!
What a wonderful essay, and as GSN stated, having Kate's writings intertwined makes your words even more impactful. I see this essay is almost 5 years old, so I hope you are still doing ok, and able to participate in hiking and bike riding. What a remarkable story you tell, the perseverance in dealing with your disease... something to be very proud of. Kara is right, you are a masterful writer. I hope we get to see more. I enjoy your posts on Threads.
I grew up in Palo Alto, know the Stanford campus well, went to summer camp at Mt. Herman in Felton, and am an avid cyclist at age 77... although age is rapidly catching up with me.
Incredible essay! I am 56, have been active (too much so) all of my life. I suffered 2 fractured vertabra in Aug and found out I have severe osteoporosis - incurable and irreversible. No, it is not the same, or as severe as your malady - but I do understand what a mind f___ it is for person, formally "immortal" to confront age, time, genetics etc in such a jarring way. Thank you for sharing!
One of the most effective elements of this piece is the interlacing of Kate’s commentary with your own. I found her introductory remarks especially moving. Her impulse to tangle an encounter with dictionary definitions with the threads of pain that come from finding one’s heroes stricken was an apt way to deal with the edges of her loss. You do yours justice as well. Wish you would write more about doctoring. Cheers in 2023 from Hawaii.
Hi Dr. Swisher. I found your substack from your sister's tweet, and I just wanted to say thank you to you and your daughter for writing it. My brother, an avid cyclist and hiker who lives in Colorado, was diagnosed with FSH a few years ago. He's been valiantly fighting, joining trials and taking on a leadership role with the Colorado FSH group, but he also struggles to do the things he loves. I wish you both strength and continued courage. Please keep writing!
Thanks Kori! I really appreciate your reading this and sharing your brother’s story. I would love to hear more. Please let him know that I am always available to share whatever wisdom I have gained and would love to hear about his experience as well. I can be reached at jlswishmd@gmail.com. One of the greatest blessings your brother and I both share is the love and support of our sisters. We are both lucky that way!
Beautiful and heart-breaking and warm. There's a real thread of resilience you show going back to your post-bacc days at Santa Cruz. I'd love to hear more about that as well as any practices - aside from biking - that strengthen your positive psychology muscles...because those are clearly just getting stronger & stronger. My students could really benefit from your insider tips!
Love this piece by you. I’ve been going through a similar process to your diagnosis since right before COVID began. They think I have a mild form of lgmd, but genetics aren’t showing them anything definitive.
What are the resources that you most recommend for someone at the beginning of the journey you’ve been on? Diet, exercise, any resources that could help delay damage would be greatly appreciated. My neurologist was basically like no treatment, no cure, see you next year. As a person accustomed to action and agency, I would love to feel like I can help at the margins, and I’m not a dr, so combing through the snake oil online is a nightmare.
Thanks Allie. My neurologist who I greatly admire pretty much told me the same thing. For most dystrophies there is no cure nor medication one can take. Exercise is always good provided you don't overtax the affected muscles, as the mechanism of several dystrophies is a failure of the repair process. But you do need to strengthen and stretch accessory muscles. Personally, I ride my e-bike a lot, and hike as much as I can. I should be better at low weight high rep training, but my work schedule is crazy. Lastly keeping weight off is a good idea for mobility. That's about it! Aside of course from having a good attitude and a positive outlook. A little Pollyanna, but true.
Thanks so much for the response. Do you have a recommendation on a type of dr who has helped you navigate things like orthotics, stem cells-to do or not to do, proper vitamin supplementation for muscle health? I’m 39 and hoping I can maintain as much muscle health as possible until better therapeutics are available.
Weight isn’t an issue and I do Pilates 4/5 days a week which helps me feel better. I also love my acupuncture, which I receive once a week.
My orthotist is named John Allen at Allen Ortbotocs labs in San Rafael. He is amazing. I have AFO's on both legs made by Ottobock (Walk-on Trimmable). I occasionally wear a thoraco-lumbar support due to the abdominal dystrophy. I eat a balanced diet, and try not to drink too much. I don't take supplements. As I wrote in my story, I was about your age at diagnosis and it has been slowly progressive, but not at all terrible. I have had to adjust my expectations though, and enjoy what I can do. Keep in touch amd let me know how you are doing!
Thank you very much. I appreciate the perspective and the responses. When you’re first being diagnosed there are so few resources, and they all seem so bleak that it’s very heartening to hear your positive perspective and that you’re still working at 61.
Sooooo moving ... I so admire your courage, your strength & your humor. You never know what someone is going through, even when they're a jovial wisecrack ... So much respect to you, Dr. Swisher.
Hi Jeff. I still remember the morning in the early 00’s when we crossed paths in the parking garage at the Cal Campus and I asked you about your pronounced limp, which I’d never noticed before. I assumed you’d injured yourself and would tell me it was getting better. I clearly recall how matter-of-fact and open you were in sharing with me your new, devastating, diagnosis. And I recall feeling sad that you were going through this and ashamed for having intruded on something so deeply personal. I watched over the next 20 years as you navigated the daily grind we both understand too well, knowing that yours was so much more arduous than mine because of the extra burden you were forced to carry. I always felt a profound respect for how stoically and professionally you did everything that was required of you and more to be the best at what you do, no matter the difficulties. And though we spoke many times, and even socialized occasionally, we never spoke about it again. Having read this story, and gaining even more insight into what this has been like for you, that respect is now deeper than ever. Be well, Jeff, and keep on keeping on. KB
Jeff, thanks for directing me to this piece. Sorry for your dx, that’s shitty. Human of course, but shitty. Dx could be worse, yes? I don’t mean to minimize. At 73 there are still many things I can do, but so many I can’t anymore. I trained as a dancer to qualify for a RDT credential, (Regisgered Dance Therapy). I never attained that credential but did attain other ones. Along with a BSN and MPH, I was able to work as an ergonomist and loved most of those minutes, albeit some fear in high hazard industry.
You have a lovely family. It seems we both live in lovely places, I love Portland. I feel so lucky that my husband and I took the chance to move away from family and locate hear back in the late ‘70’s. It’s spring now and so much is blooming. The air looks and feels like it did in the ‘70’s and ‘80’s although in that far away time it was July or August, now it’s April, not even May. Sigh, our lovely planet.
I will continue to read your stories. I hope you can smell the redwood today, and maybe enjoy a glass of Chalk Hill Chard, or some chilled white cuvée, or a delightful light red, with whatever comes out of your kitchen at dinner.
Hey Beverly! My middle son lives in Portland. He just moved to a new place a few minutes walk from Discovery Park and he hikes every day!
I have been fortunate to find a good trainer who is helping me figure out the best workout that doesn’t burn the muscles out, while still strengthening the ones that are not affected. It’s a delicate dance indeed. My next story is about my Dad and his deployment in 1963 as one of the recovery docs for Gordon Cooper when she splash landed in the Pacific after the last Mercury mission. Hope to publish it soon!
What a wonderful essay, and as GSN stated, having Kate's writings intertwined makes your words even more impactful. I see this essay is almost 5 years old, so I hope you are still doing ok, and able to participate in hiking and bike riding. What a remarkable story you tell, the perseverance in dealing with your disease... something to be very proud of. Kara is right, you are a masterful writer. I hope we get to see more. I enjoy your posts on Threads.
I grew up in Palo Alto, know the Stanford campus well, went to summer camp at Mt. Herman in Felton, and am an avid cyclist at age 77... although age is rapidly catching up with me.
Incredible essay! I am 56, have been active (too much so) all of my life. I suffered 2 fractured vertabra in Aug and found out I have severe osteoporosis - incurable and irreversible. No, it is not the same, or as severe as your malady - but I do understand what a mind f___ it is for person, formally "immortal" to confront age, time, genetics etc in such a jarring way. Thank you for sharing!
One of the most effective elements of this piece is the interlacing of Kate’s commentary with your own. I found her introductory remarks especially moving. Her impulse to tangle an encounter with dictionary definitions with the threads of pain that come from finding one’s heroes stricken was an apt way to deal with the edges of her loss. You do yours justice as well. Wish you would write more about doctoring. Cheers in 2023 from Hawaii.
What a heartfelt and vulnerable essay. Wishing you all the best.
Hi Dr. Swisher. I found your substack from your sister's tweet, and I just wanted to say thank you to you and your daughter for writing it. My brother, an avid cyclist and hiker who lives in Colorado, was diagnosed with FSH a few years ago. He's been valiantly fighting, joining trials and taking on a leadership role with the Colorado FSH group, but he also struggles to do the things he loves. I wish you both strength and continued courage. Please keep writing!
Thanks Kori! I really appreciate your reading this and sharing your brother’s story. I would love to hear more. Please let him know that I am always available to share whatever wisdom I have gained and would love to hear about his experience as well. I can be reached at jlswishmd@gmail.com. One of the greatest blessings your brother and I both share is the love and support of our sisters. We are both lucky that way!
Beautiful and heart-breaking and warm. There's a real thread of resilience you show going back to your post-bacc days at Santa Cruz. I'd love to hear more about that as well as any practices - aside from biking - that strengthen your positive psychology muscles...because those are clearly just getting stronger & stronger. My students could really benefit from your insider tips!
Your piece should remind us all to treat Strangers Passers-By gently. Courtesy at check outs,
on Customer Service Lines (no matter how annoying) and random encounters.
No one knows what they are currently dealing with, and few are without.
We can add or subtract from their day.
Love this piece by you. I’ve been going through a similar process to your diagnosis since right before COVID began. They think I have a mild form of lgmd, but genetics aren’t showing them anything definitive.
What are the resources that you most recommend for someone at the beginning of the journey you’ve been on? Diet, exercise, any resources that could help delay damage would be greatly appreciated. My neurologist was basically like no treatment, no cure, see you next year. As a person accustomed to action and agency, I would love to feel like I can help at the margins, and I’m not a dr, so combing through the snake oil online is a nightmare.
Thanks Allie. My neurologist who I greatly admire pretty much told me the same thing. For most dystrophies there is no cure nor medication one can take. Exercise is always good provided you don't overtax the affected muscles, as the mechanism of several dystrophies is a failure of the repair process. But you do need to strengthen and stretch accessory muscles. Personally, I ride my e-bike a lot, and hike as much as I can. I should be better at low weight high rep training, but my work schedule is crazy. Lastly keeping weight off is a good idea for mobility. That's about it! Aside of course from having a good attitude and a positive outlook. A little Pollyanna, but true.
Best of luck!
Jeff
Thanks so much for the response. Do you have a recommendation on a type of dr who has helped you navigate things like orthotics, stem cells-to do or not to do, proper vitamin supplementation for muscle health? I’m 39 and hoping I can maintain as much muscle health as possible until better therapeutics are available.
Weight isn’t an issue and I do Pilates 4/5 days a week which helps me feel better. I also love my acupuncture, which I receive once a week.
My orthotist is named John Allen at Allen Ortbotocs labs in San Rafael. He is amazing. I have AFO's on both legs made by Ottobock (Walk-on Trimmable). I occasionally wear a thoraco-lumbar support due to the abdominal dystrophy. I eat a balanced diet, and try not to drink too much. I don't take supplements. As I wrote in my story, I was about your age at diagnosis and it has been slowly progressive, but not at all terrible. I have had to adjust my expectations though, and enjoy what I can do. Keep in touch amd let me know how you are doing!
Thank you very much. I appreciate the perspective and the responses. When you’re first being diagnosed there are so few resources, and they all seem so bleak that it’s very heartening to hear your positive perspective and that you’re still working at 61.
It helps to have a job I love and a very supportive family and group of friends. I hope you read some of my other stories! I have a few coming soon.
Sooooo moving ... I so admire your courage, your strength & your humor. You never know what someone is going through, even when they're a jovial wisecrack ... So much respect to you, Dr. Swisher.
I like being a jovial wisecrack! Thanks Maria!