If you or someone you know has been diagnosed with ALS
(Amyotrophic Lateral Sclerosis, also known as MND or Lou Gehrig's Disease), I
invite you to join me as I explore and share the many ways we can live a
balanced and resilient life - - all while LIVING with ALS.
I consider you my new friend, because no matter where you live
- - we share the ALS experience.
Sometimes my posts will be humorous and some are serious,
but I try to always make them helpful. Usually, I add lots of links and resources so you can continue
to explore ideas on your own. Remember, as I share my thoughts and experiences with you, I hope
you'll share your comments with me.
About me
Years ago, my professional life involved teaching wellness and mind-body health as well as leading many, many fitness classes. In 1996, I was part of a team that created the St. Luke’s Center for Health & Well-Being; a department of St. Luke’s Hospital, in Cedar Rapids, Iowa. (Read my post about our wellness center here)
We were the first hospital-based complementary and
alternative therapy center in the state of Iowa and offered classes in yoga,
tai chi, Pilates, and meditation. Over time, we grew to add Holistic Nursing, therapeutic massage, acupuncture, Reiki, and even Holistic Physician services. As the center's
Director, my time was spent teaching classes and educating patients, hospital
staff, and the community on the topic of wellness and our unique services. I
spent over twenty-nine years helping others reach and achieve their health
goals.
In December of 2010, when I was diagnosed with ALS; the
challenge for me became one of: how to apply all those wellness and movement experiences to my
new situation - - you could say I became my own special class of
"one!"
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Over the past 11 years, I've written a (free) book about my first year living with ALS, began writing this blog, been invited to speak at ALS-related events, and now write a weekly column for ALS News Today. Throughout, I followed a simple formula for daily living; based on the wellness principles I once taught to others. This formula - - shared through my writings - - supports my goal of living a balanced wellness life - - while living with ALS.
This blog is dedicated to encouraging you to do the same!
Where do you begin?
You can download my book, go to this grand Index of all my blog posts, or use the tabs at the top of this page that list categories for my blog posts.
By the way, I also write about trampoline history!
You can follow the complete history of my father's company: the Nissen Trampoline Company at my blog: Nissen News - - http://www.nissentrampoline.blogspot.com where I have a complete archive of company newsletters beginning with the year 1957.
I highlight the events, people, and athletes who contributed to the success of trampoline as a sport in my blog: Trampoline History Blog - - http://www.trampolinehistory.blogspot.com
Enjoy my archive of vintage trampoline videos on Youtube at: Trampoline History Videos
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| Dagmar Munn ALS and Wellness Blogger |
| "Wellness is more than being free from illness. It is a dynamic process of change and growth. A conscious self-directed and evolving process of achieving full potential." |
This is wonderful...just amazing how you can verbalize these marvelous techniques for all of us in our daily living. Thank you
ReplyDeleteI appreciate your kind words and support and hope you enjoy my future posts! Thank YOU.
DeleteYay! I love your blog, and you are such an inspiration!
ReplyDeleteThank you Christine! I look forward to this year of sharing my thoughts and motivation with you and all my blog readers.
DeleteHi Dagmar,
ReplyDeleteYou are the queen of ALS fun stuff ! We call it A LOVE STORY - ALS.
Wonder if you have an email we could contact you. We are in Redondo Beach Ca. and a few years into the abundant laughable situations. walkindadog@aol.com
Thanks for the "high five!" I will contact you shortly. Looking forward to it!
DeleteHello Dagmar,
ReplyDeleteI feel blessed to have found you! I live in Wisconsin and also have ALS. Is there any way possible to purchase one one your Father's inventions for bouncing? This is truly amazing! Please email me: carole.fusaro@yahoo.com
Thank you - good to "meet" you too! I will contact you.
Deleteis it possible to buy one of you Fathers bouncing invention i have als and i am interested in any kind of exersises that you do Thanks my e-mail is brendachunt1@yahoo.com any info will be appreciated have you ever heard of BioXCell?
DeleteWow, great site--thank you for all your work! Where can I get one of those trampolines? I was also a bouncing fanatic and gymnast and think I could still manage a little supported bouncing.
ReplyDeleteKat - Unfortunately the HealthBounce unit is no longer available from the original vendor. However if you email me on Google+ I can share links to a few distributors who may still be selling them. In general, look for any high quality rebounder that has a bar or hand-hold attachment to use while you bounce.
DeleteThis post was very inspiring. My husband has ALS and i often read a lot of posts about it in hopes that i can learn even more than i already know. I think it is amazing that you were able to overcome your obstacles by coming up with a daily life routine. What a great website.
ReplyDeleteAubrey Holloway @ Primary Care AK
Thank you Aubrey. I hope you have had the opportunity to read my e-book (available as a free download from this blog site) that shares more of my experiences and motivation for others to have a balanced life while living with ALS. Best wishes and regards to both you and your husband.
DeleteDagmar , happy to have found your blog ,as a fellow pALS it is always great to connect with those that have taken a positive and inspiring path to share. We have also chosen to follow a path to help our fellow pALS and are working on the funding and development of the 1st ALS Patient research app @ www.alsneversurrender.org .. we believe every person matters and hope to involve as many pALS as possible ! Look forward to reading your past posts and enjoying many more new posts to come !
ReplyDeleteHello,
ReplyDeleteI'm a long ago friend that wants to send you his thoughts and prayers. Those days of beating your father at Spaceball I will always cherish. Best wishes. Ron
Hi Dagmar,
ReplyDeleteI was diagnosed in March 2017. I enjoyed reading your book and I'm also reading your Blog. You are an inspiration and I've learned a lot about this disease from you. My husband and I have done a lot of research. For us every day is an adventure and we laugh quite often. The support group that I attend doesn't share much information. I ask questions but no one wishes to answer or share, it's a little discouraging, but I don't let it get me down. I have a very positive attitude (as many have noticed and said). I do a some exercise, read, and sewing. I use the walker in the house (trying to avoid running over the dog). I'm fighting on not using the fancy schmancy mobility chair until my legs tell me no more. Thank you from the bottom of my heart.
BTW, I don't like wearing the Storm Trooper shoes either, where did you get your shoes, I would like to dance in style.
Hello - - Welcome to my blog posts. I am happy to learn that my book and writings have been of help. My shoes? I bought 3 pairs from Hotter Shoes https://www.hotter.com/us/en They have "style" (not orthopedic) and come in many widths. Don't let the price stop you...they are worth it - - and last for years. I bought the style "Shake." But they have free shipping and returns and are very helpful on the phone. Good luck! Also, don't miss that I am now writing a weekly column for ALS News Today. Just click the link on the upper right of this blog. Dagmar
DeleteHi Dagmar.....greetings from long past...national Summer Paleastrum in N MI. I looked you up because I was in Canton, Ohio, & I thought you came from there. Anyway, I found you here. And now I know why. I walked this journey with my husband for 5 years. I trust that you have the support you need. You’re now on my prayer list. I remember the day you were brought to camp. You were a brave & courageous girl. I’m sure your blog is helping those who can appreciate your spirit. Tomorrow I’m going to an ALS meeting & I’ll share it with the others. Your family’s generosity at camp touched many lives. Most of the equipment was donated by your dad. I’m thinking about the fun we had as you let me learn to braid your hair every morning. Funny what one remembers. Wish you a best day today.��
ReplyDeleteValerie, hello!!!! So sorry to learn about your husband. I am glad you found me...! I will connect more with you via Facebook...did you know there is a group for NSP campers? :-) Hugs to you across the miles!
DeleteHi Dagmar!
ReplyDeleteThanks for this wonderful and informative blog. I am a slow progresser PALS, trying to provide reliable information about ALS at my personal blog named Living with ALS. Actually it's written in Turkish but the Google translate can be helpfull. I have learnt many things visiting your blog. I hope your journey will be joyful and long.
Alper
hi Dagmar, thank you for your blog, i am from Holland and we do not have inspirational blogs as yours. In Holland they all are so depressing not positive. I am so happy to have found your blog. I tryed to think positive but could not do that on my own. i have read about your mindfullness and are trying to do that. Also i am doing exercises and i feel better doing them.
ReplyDeleteAstrid
Hi Dagmar
DeleteI am hoping my 1st blog went thru as I am new to this and had to sign in
Do you feel with supplements, good foods and exercise my sister can stay functional for longer?
I’m praying she is one of the people that progresses slowly amd the medication helps her along
It’s so sad to think she will be paralyzed and live that way for her remaining years
Look forward to hearing from you
Hello
ReplyDeleteMy name is Michelle
My sister was diagnosed 3 weeks ago with ALS
You are an inspiration and I’m so happy for you and to hear there could be hope to feel better in your world 🙏🏻
What advice can you give me for my sister?
Should she join a wellness center?
Keep exercising until her muscle is taken away?
Any vitamins you believe has helped you?
I want her to have a fighting chance against a disease there is no fight for
Praying for a cure to end this for all💙
I remember the trampoline centers!! Nards, in Amarillo, Texas was one of the first in country where he taught many young men and women how to compete competitively. Many of his students went on to college via a scholarship thanks to Nard!
ReplyDeleteRectangular Elite Trampolines UK
I live in Amarillo so when i saw Nards my ears perked up! I have been following Dagmar for a year now and love her advice. As a nurse, i see the clinical side and her pearls of wisdom has helped me tremendously in staying more positive while my family and I cope with this disease. I see my calling now to help provide guidance and inspiration to those in my community who have been diagnosed with ALS.
DeleteHello from Iowa. I am thinking of all the days at Stars Gymnastics. You have always been an amazing inspiration which has followed you through your life. My dad used to talk about George from their high school days. Dad remembered George jumping off his garage onto what was then a make shift Tramp. Dagmar your writing is so good and I couldn't be more proud of you. Life is good in Iowa. Tammy sends her best from Georgia. She and I have been working together since 2006. Just wanted to say hellow, Love as always, Joanne (joanne@jmllcia.com)
ReplyDeleteMy husband is suffering with MND. Can I get details of AFO. Which type is good?
ReplyDeleteWeight less AFOs are available or not?
Any other option to control foot drop?
Please respond.....
Hello Thera, I have written about my AFOs and even include a photo of them here: https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html
DeleteCurrently, wearing AFOs are the standard treatment to help with foot drop.
Please give some tips for MND management for a better life
ReplyDeleteHello Thara, my whole blog is dedicated to sharing tips for living with MND/ALS... just check out my index page to choose among many topics: https://alsandwellness.blogspot.com/search/label/Blog%20Index
ReplyDeleteHello I’m happy to have found you. I was diagnosed in September 20 20 after a year and a half of testing. Covid didn’t help that timeline. I was very active form but as I kept falling it may be a bit fearful of doing things. I am now using a walker inside my house, in a wheelchair when I go out. The wheelchair is a current change but I find I have much more energy to me joy myself when I’m out with my family and friends. I always look at the sunny side of life and realizing that this diagnosis my daughter who lives in Virginia, I live in California, has been out every six weeks for two weeks at a time. I love spending this time with her. I also have many more people coming from across the country to visit. I have Kaiser insurance and have gone to two clinics for ALS patients. I have some in-home care. My life has definitely changed due to my balance issues. I Would be interested in clinical trials we don’t know where to begin. So any help you could give me a love those lines I wouldn’t appreciate. Thank you
ReplyDeleteHello Deborah, here are 2 good sources for information on clinical trials:
Deletehttps://iamals.org/get-help/als-signal-clinical-research-dashboard/
https://bionewsclinical.com/patient-community/
Hello,
ReplyDeleteMy sister was diagnosed with ALS . In August it will be two years. She is failing a bit however it appears to be slow progressive. Our father had cerebral atrophy with deterioration of spine. I find it difficult to believe there's no connection. Reading the beginning of your journey was as if I was ready hers. She has been falling lately. Her breathing and speech ,eating and walking with braces and walker. She is losing her will to fight. I would love to order a trampoline and shoes from your suggestion.would it be possible for you to email her. She was interested when I told her your experience. She needs outside encouragement. Drs tend to be doing and gloom sometimes. Please let me know if this is possible. Thank you. Godspeed on your journey......
Beth
Here are some recources about the rebounder I use: https://www.activefun.com.hk/products/health-rebounder-bpod/
Deletehttps://www.reboundforhealth.com/
Hi, your blog is very helpful!
ReplyDeleteMy name is Sam and I am 59 and have ALS. I was wondering if you experienced any difficulty speaking, my speech is deteriorating and would like any insight to any help or advice you can provide. Are there any supplements or a specific vitamins you've found helpful?
Thank you, Sam
Hi Dagmar I was diagnosed with ALS ,last March ,Bulbar ALS,my speech is affected,but so far nothing else,I remain completely independent,I am on a cocktail of meds ,Riluzole,RadicavaORS,and the brand new one Relyvrio,so far so good no side effects ,my question to you what meds are you on ,I enjoy reading your blogs thank you for helping me stay positive.sincerely Suzzie Mikolajczyk
ReplyDeleteHello Suzzie, I'm glad my blog is helpful for you! I have been taking only Riluzole for the past 13 yrs. That's all. Best wishes to you!
DeleteHello Dagmar
ReplyDeleteI hope you still go well.
I also was diagnosed with ALS, 14 months and counting...
Cheers for all the writing you do, thanks!
Hello Dagmar, I’m not sure if you remember me, but I was a chiropractor back in the good old days in Cedar Rapids when you were there. I was just thinking about you and hoping you were well so I thought I’d look you up. I’m now a nurse practitioner living in Wisconsin. I hope you are well! Kori Schumacher (last name would have been Engelkes when I was there).
ReplyDeleteDagmar, I am trying to get some insight into getting a colonoscopy done. I was diagnosed with ALS in Oct 2023. Except for my sleep apnea, I have no loss of eating/drinking/swallowing. I have only found one reference to risks of this procedure and it seems to focus on the affects on breathing. I thought I read somewhere, but I cannot find it, that you were told to forego this procedure. Any insight would be great.
ReplyDeleteBTW, I lived in Vail, AZ for 10 years, but that is long ago (10 years).