Friends,
Thank You!
How do I even begin to thank everyone that put so much energy into making the Day of Endurance such a great event as well as everyone who engaged in it in some way? I still can’t believe I get to be part of such a joyous journey and day with such amazing people. THANK YOU TO ALL!
I also don’t know how to put the day into words when I see everyone come together in such a loving way despite all the challenges we have of living with MS. I’m not on Facebook but I did get a chance to see some of the pictures shared there. It was great to see all the smiles on people’s faces and the love shared the entire day. Al and Marlene who are both in their 80’s living with MS certainly show us how to have fun and share their love.
We all worked hard to do what we “can” do. That’s different for all of us living with MS. We all strive to make physical accomplishments. What goes a long with physical accomplishments? There are so many mental, emotional, social and spiritual benefits when we work toward the physical accomplishments together. It’s really hard to comprehend what’s all going on here. I don’t think anyone will ever know the true impact of the ripple effect that’s happening. “What” we physically do is important but “who” we do it with is what really makes the journey worthwhile, beneficial and memorable. There’s so much love shared on a daily basis. We are so blessed to have each other.
I just love all the different options we have to “just keep moving”. It was fun seeing all the different styles of bikes, trikes, handcycles, tandems, grit chair, walkers, walking poles, etc.
This year, we did something fun. Anyone that did anything more than they did last year, they got to bang on a gong and we would celebrate their accomplishments with them. The gong seemed to be going off all day. That warmed my heart knowing so many people were doing better than last year despite their challenges of living with MS and the heat.
The heat was not real MS friendly. Many of us had neurological burning sensations which turned into neurological pain due to the heat. Personally, I had to put ice in my shoes several times while biking to get the pain to calm down. It worked really well until they heated back up and then I did it again. The heat wasn’t as bad on Saturday as it was on Sunday and Monday though. We need to be thankful for that or we could have had a whole different experience.
So, personally, did I do better than last year? I don’t want this to be about me but I do love it when we all share. Yes, I did better in the swimming, biking and walking than last year. This year I swam 2.4 miles faster than I swam 2 miles last year. Training with Todd and Dawn really helped me. I was swimming with some great people. That got the day off to a great start. For biking, I was able to ride with my son Jacob for the first two laps and my good friend Rainer for the rest of the ride. I ended up riding 113 miles. I had to ride one mile further than last year so I could bang the gong. We finished the bike ride about 7:00pm. Last year, I walked 5 miles. This year I walked 7.25 miles with family and friends. I left the park at 11:30pm, went home, took a shower and slept until 6:30am. By 6:30am I was done sleeping and felt really good yet. I was not stiff or sore at all. I couldn’t believe it. I still say my MS is getting better every year. This Day of Endurance was another good example of that.
I REALLY wish MS wasn’t so different for each of us. I know it’s hard for some people to hear stories like this when they’re working so hard and feeling like their MS is still getting worse. Sometimes I feel like I shouldn’t be sharing my story because it makes others feel like they’re doing something wrong. Please don’t look at it that way. MS is different for all of us and we don’t have it figured out yet. We need to accept that. I do believe if we continue to try different protocols and share our experiences, we will continue to learn from each other. From there, we each know our bodies well enough and know what we can do. Hopefully we can all continue to benefit from each other in some way. I hope you don’t mind me sharing my experience.
I really want to hear from you, whether you are person with MS that engaged in this journey from January until now, a loved one of a person with MS, family member, friend, volunteer, supporter of our mission, etc. I would love to hear from you about your Day of Endurance journey and experience. Please share.
Do you want some good news? From now until January, you get to “Just Keep Moving” to work on a specific weakness or do enough to maintain. Actually, do whatever you want from now until January. In January, we’ll kick off our journey to the Day of Endurance again with the consistent daily training plan and one long workout per week. We have reserved the same picnic area for next year. Our 2025 Day of Endurance will be August 23, 2025. I’m already getting excited for it! 😊
Ed and Adam’s Podcast
This week, Ed, Adam and Ed’s daughter Ava talk about nutrition. Ava is going to school to be a registered dietician. She’s not quite there yet but well on her way.
Here’s a link:
https://podcasters.spotify.com/pod/show/ava-g4/episodes/Lets-Talk-Nutrition-e2nfdk3
Thanks Adam, Ed and Ava for doing these podcasts together!
Member Spotlight – Ron Agen
Ron helps me a lot on much of the behind the scenes stuff that we do. I call on Ron for all kinds of things. Thanks so much for all your help Ron! I appreciate it as well as so many others even though they don’t realize all you do. I don’t know if you realize it or not but Ron mops all the floors for us every week as well.
Plastic bags needed
Thanks to all for bringing on plastic bags already. That will get Jim started. Please keep them coming 😊
Jim Wuhrmann is back at it again. He found someone to crochet sleeping mats for the homeless so he’s cutting the bags so they can crochet them. There’s a box outside the lunchroom. Please bring in bags if you have them. Let’s keep Jim busy.
How’s Matt Panelli doing on his climb?
Matt Panelli is climbing Mt Kilimanjaro and doing great. He should be summiting the top of the mountain today if all goes well. Matt’s Dad Ed has been keeping me posted daily. I really appreciate that, Thanks Ed!
Matt’s camera man Eddie was taken to the hospital from 15,000 feet. Eddie is doing well but let’s keep him in our prayers. Matt’s Dad Ed shared a post that Eddie posted on Facebook. Eddie has and amazing heart.
Here’s from Eddie’s Facebook post:
It’s 9 am here ..I’m back at the hotel after I was rushed to the hospital …I pushed my body and lungs til I literally collapsed..out of breath and out of energy….🤮 about 15x all together in less then 2 days …I left my guts up on that mountain literally…the Dr..my guide and team decided that under the condition I was in it was time to head back down…I really didn’t want too but it was the right call for my safety and life …I couldn’t keep anything down ..not even water…I got to the lava tower at about 15000 feet and my body said “no mas”….got a shot for nausea and my blood drawn …I’m able to keep my food down now and liquids…this was by far one of the hardest things I’ve ever had to do…at first I was mad sad and disappointed in myself but it’s just one of those things you cannot control …the team is still up there and I’m praying for there safety and well being …their body is climatizing much better then mines did…but it sure does get more difficult with each day you go up…thanks to everyone who was concern when I first posted my first symptoms ..Wow …do we have a story I can’t wait to hear about what else happens up there…just so everyone knows Matt Panelli Antonio Maldonado Chris Godxilla Taylor III are doing amazing and pushing through…so proud of my team …We are family now …family goes through things and look out for each other …and we sure did up there..this experience is not a tragic story trust me it’s a story about 4 warriors who came to capture the story of the toughest warrior who survive cancer and has multiple sclerosis my boy Matt …if I had to do it again I would without a doubt …for now I pray and we wait to put the story together once they come down from the mountain 🏔️….all I can say is that it was beautiful…everything …the people the views…and the challenge….the guy who can …is killing it!
💪🏼❤️🏔️⛺️🦍
Matt will be making a documentary of this journey. Here’s a link to a sneak peak of the initial footage. https://app.frame.io/presentations/7c5de96a-14af-460c-8325-c689ce09440c
We are cheering for you from here Matt!
Our Caregivers Retreat – September 21, 2024
Phil has been working hard to put together another great retreat for our Caregivers. I would love it if all our caregivers would engage in this time together. Here’s a note from Phil. We’ll have more info available to those who sign up.
The cost for this event is covered by MS-Just Keep Moving, Inc. We know how important our caregivers are to all of us living with MS. They do so much for us, we want to do this for them. I hope you will encourage your caregiver to engage in this day with other caregivers.
Here’s a note from Phil:
Hi Dan,
Here is information for promoting Replenish in the newsletter.
2nd Annual Replenish retreat for MS Caregivers
The Redemptorist Retreat Center, Oconomowoc, WI
September 21, 2024
9:30 am – 4:00 pm – Lunch will be served
Register before Noon Friday Sept 6th.
To Register: https://qr1.be/NLQS
QR Code below & attached
Speaker: (These are the key items from her attached bio)As a parent, provider, & trainer for people working with disabilities, Jennifer Nicholson provides invaluable insights, resources, & best practice training for precise program & daily life implementation.
- Jennifer’s practice, Forward Integrated Services (FIS), is staffed by Board Certified Behavior Analysts (BCBAs) who provide training & support for parents & caregivers.
- She is the parent of two teenage sons on the Autism spectrum.
- Her aging father lives with her family.
- She’s the special needs ministry director at Spring Creek Church.
We have room for 50 maximum (Last year we had 15).
Phil Ransom
- 888. 0108
Cardio and Balance Programs
These classes are aimed to get everyone exercising together. I like that word “together” 😊. We’ll need help from volunteers before and after the cardio class on Wednesdays and Fridays to get members on and off equipment. All are welcome and encouraged to join.
Wednesdays
8:30am – 9:00am: Cardio exercise
Location: in the big room using aerobic equipment in front of big TV
Pick your favorite piece of equipment to use, bring a water bottle, and arrive a few minutes early to get the equipment set up to your height.
10-10:30am: Cardio exercise
Location: in the big room using aerobic equipment in front of big TV
Pick your favorite piece of equipment to use, bring a water bottle, and arrive a few minutes early to get the equipment set up to your height.
10:30 – 11:00am Tai Chi led by Ricky
Fridays:
9:30 – 10:00am: New Class! High intensity interval training (HIIT) body weight circuit class. Great for those who aren’t attending Friday morning bike rides and want to get their heart pumping! Geared to intermediate to advanced ability level. Class may be indoors or outdoors depending on weather. Find Dr Kate at the start of the class time.
10:00 – 10:30 am: Seated balance class
10:30 – 11am: Standing balance class
Pick the class / classes you feel most able and comfortable participating in. We will have chairs set up to sit on and/or use for balance support.
Email Dr Kate at kborn1234@gmail.com with any questions.
Friday Morning Bike Ride
Let’s keep riding!
We could still use a few more volunteers on the ride with us. We’re getting a pretty good rhythm going when we have enough and gets a little more spread out when we don’t. Thanks to all for showing up and doing your part!
We’ll be meeting Friday morning at 7:00am at Nettesheim Park in Pewaukee. It’s on the SE corner of Hwy SS and Oak Street. The GPS address is: N26W27495 Prospect Ave, Pewaukee, WI 53072.
Come a little early so you can get your bike out of your car and be ready to ride as close to 7:00 as possible. We’ll ride until about 8:45. Let’s ride and have some fun!
For those who wish you could join us but can’t; please know we have you in our hearts on these rides. We’re riding with you and for you. I hope you too can join us someday.
Educational Sessions
This Friday, August 30th 11:00 am – noon: Wisconsin Adaptive Sports Association (WASA) is returning to host a “TryIt” session to play pickleball!
Friday, September 6th 11:00 am – noon: sharing meeting. Members with MS will have the floor to share what has worked for them to manage their MS and general health. This opportunity was requested by members at the gym to share with each other. No formal presentation will be hosted, but Kate will facilitate discussion if needed.
Friday, September 20th 11:00 am – noon: Neubie progress. Ricky will lead a presentation and discussion on progress members have made on the Neubie and provide a review of the Neubie for past, current, and future users.
Friday, September 27th 11:00 am – noon: muscle atrophy. Kate will lead a presentation on muscle atrophy and what causes muscles to stop working, lose strength, get smaller, and ways to combat atrophy.
Friday, October 4th 11:00 am – noon: Physical therapists, Kimberly Sawall, Emily Hill, and Jennifer Kolesar-Springhetti, from Prohealth Care will review balance tests and the importance of testing balance for walking and translational movement abilities. They will also address fatigue, fatigue management, and assessment of fatigue for people with MS.
Friday, October 18th 11:00 am – noon: Tai Chi. Ricky will lead a presentation and discussion on the benefits of Tai Chi.
Friday, October 25th 11:00 am – noon: Stress management. Deb Graf, psychotherapist, will lead a presentation and discussion on stress management.
Future topics could include: emotional health, nutrition, yoga, tai chi, wellness topics, safe use of gym equipment for your body, best exercise for you and more. What topics would you like to see? Please let Dr Kate, Joan, Traci, Ricky or Dan know.
Let’s get together! – New Hours
We’ll be getting together from 8:00am – noon on Wednesday and Friday mornings at the gym. I hope you’ll join us!
Wisconsin Metal Parts – Westmound Building
MS-Just Keep Moving, Inc.
W228N791 Westmound Drive
Waukesha, WI 53186
Prayer Group We’ll be having our prayer group Wednesday from 11:00am – noon.
I just love the way we share, pray and laugh together while we witness prayers being answered weekly. It’s truly amazing!
Thanks goes to God and to everyone that joins us. Let’s get together to share, listen, talk, give thanks, and pray however God leads us.
MS-Just Keep Caring – Our Caregivers support group will be the first and third Friday of each month from 10:00 – 10:30am. The next one will be Friday, September 6th 2024. If you’re a caregiver of someone you love with MS, please join us and share your experience of caring for your loved one. This has been very helpful for many. Thanks to all who participate!
Our Facebook page is private. That means you’ll need to join if you want access to all our fun and progress. We’re now at 541 members. That’s awesome! https://www.facebook.com/groups/2639832389489709
Our Facebook page is active and fun. Lots of people are doing more and sharing their journey on Facebook. Feel free to join, post and share your experiences and comments.
There were some awesome pictures, videos and comments shared again this past week. Thank you to all who are sharing!
Thai Massage with Ricky Heldt
Ricky will be here on Wednesdays doing Thai Massage. Ricky will be taking Fridays off for a while. Perhaps through the summer.
There is a sign up board to be used to accommodate your needs for your exercise plan. Some people with spasticity need to be massaged / stretched out before they can exercise. Some people need a massage after a hard workout to loosen up their tight muscles or relieve pain.
We have limited spots for massages, please be considerate of people that need the massage the most in order to do the exercises they need to do or recover from the exercises they just did.
You can pick the time slot that works for you.
Reiki with Linda Linda will be here on Fridays doing Reiki. Many people say Linda’s Reiki work is “magical”. We’re thankful for Linda sharing her gifts and talents with us. Feel free to let Linda know you’d like to do Reiki with her. She also has a sign-up sheet.
Inspirational Humor with Adam Wollert
We’ll be having our inspirational humor zoom call with Adam again next Tuesday. Adam is a gift to all of us. Thanks to all who joined us today!
Please join us if you can.
Tuesdays @ 1:30PM
Here’s the link to join us…I hope you do!
Join Zoom Meeting with this link
https://us02web.zoom.us/j/9431389152?pwd=bWlYbFNaazVnM1M1cWxWMitlODdXUT09
Meeting ID: 943 138 9152
Passcode: 3qP2hu
Phone: 1-312-626-6799
Let’s reach out
I encourage you to share a smile and encouragement with someone. Perhaps you could call someone that you have not talked with for a while just to say hi and see how they are doing. We all could use a little extra love and encouragement.
MS is tough. Let’s have faith, remain calm, be flexible, help each other and learn as much as we can about the challenges of each day as we make good choices.
Let’s keep moving, smiling and loving 😊 It helps!
In God We Trust…we are in good hands.
Dan
Our Website: http://msjustkeepmoving.org/
P.S. With the Day of Endurance last weekend, I didn’t get out with the camera much this past week. I did get a couple pictures though. I thought these two sandhill cranes looked quite comfortable together.
The yellow weeds surrounded by the purple ones caught my eye.
This praying mantis was out doing its thing.
I caught a nice sunset in our backyard on Sunday night
With a beautiful sunset like that and a camera, you can move in a little closer to the grass and get a little different image.
If you step aside a little, you get another perspective of the same sunset…pretty cool 😊
For those who can’t get out and enjoy nature due your challenges with MS…my heart is with you. You are with me every time I’m out there. I enjoy being out there and I also enjoy sharing with you. I know how hard it is not to be able to get out and enjoy nature. Let’s enjoy nature and God’s beauty together this way.
