2. I can't think straight.
3. But as I've spent more time in warmer climes, I tolerate heat much better than I used to.
How does summer heat affect you and your #MultipleSclerosis #autoimmune #ChronicIllness #Disability ?
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I always hear a punk rock song: DUM-DUM-DUM-DUM tap-tap, DUM-DUM-DUM-DUM tap-tap (Well, you've got to do something! :)
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune
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There are few treatments for progressive MS and those have side effects. But there's a new oral treatment on the way. Only don't ask me how to say the name!
Here's tolebrutinib: multiplesclerosisnewstoday.com/tolebrutinib-multiple-sclerosis
BTW is anyone out there like me, unable to take current DMTs?
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune
4 reactions Napa community rallies to deliver new kitchen to bakery owne...
It's surprising when you open up about your condition. When people see that you are trying your level best, often they rally to your side.
I used to hide my diagnoses. Even when I long passed the point where something was obviously wrong, I would stubbornly push ahead and insist that it was an old football injury. Doing so actually made my life harder, and harder on those around me. I became exhausted with everything and no longer cared what people thought.
When I just started telling people, leveling with them, just matter-of-factly, things were so much better. It felt like a weight lifted off of my shoulders.
But the surprising part was when people would just start coming up to me with support. I never looked for any, never wanted any, still don't. But people, even in small ways, will do nice things to support, or to support others who they know are struggling — they have told me so. They have brought up people in their lives going through the multiple sclerosis experience. And I think that sometimes just telling people what it's about, instead of brushing them aside or staring them down (I've got a lot of practice with both), humanizes it to them, brings it home even more.
People dear to me have even surprised me with bigger things, like accessibility home makeovers or repair projects (building a covered porch, converting a bathroom, pouring a small, accessible concrete landing). I've argued with them not to do so, but after a point I've also learned that it's better to stop fighting others away and accept their heartfelt support graciously.
MS life can be such a struggle, and people can be hurtful. It's tricky but important not to wall ourselves off from the rest of the world. There are plenty of supporters waiting for you out there too.
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune
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We're so glad to have this now with my wife and her post-surgical shoulder. Since she insists on still #Caregiving for me, with her now using the red nylon sheet called a "slide sheet" makes moving me around much easier and safer, thank goodness. If you’re a caregiver, or know a caregiver, then you need to know about this one.
I reviewed it here: wheelieoutthere.blogspot.com/2025/07/girl-its-so-worth-it-th...
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune
5 reactions 
Go to this website for videos, info, supports and parenting resources.
www.nationalmssociety.org/understanding-ms/newly-diagnosed/p...
There's a webinar this week but it's already full. Next week I'll post the video online.
Together we can do this.
#PediatricMS #MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune
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Living with POTS can be challenging, often impacting many aspects of daily life—including the ways you’re able to work, attend school, or pursue goals and opportunities.
What has your experience been like? How have you adapted?
Is there anything that has helped—or that you think would help—you better manage your condition in the workplace, at school, or while working toward personal goals?
Share the good, the tough, and your reality with us in the comments below.
#PosturalOrthostaticTachycardiaSyndrome #ChronicIllness #Spoonie #COVID19 #autoimmune #ChronicPain #ChronicFatigueSyndrome #Migraine #Fibromyalgia
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We all medically rely on electricity: AC, mobility devices, ventilator, CPAP/BiPAP, medical devices, mattress pump, etc.
Check with your utility company as some power companies offer a Medical Backup Program and/or Medical Power Discount that gives discounts on utilities and provides a whole-house backup battery or generator at no cost or a discount if you have a medical need.
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune
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with neurologist Deja Rose, MD of the Cleveland Clinic and Emory University.
Sign up — secure.nationalmssociety.org/site/Calendar
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmunewith neurologist Deja Rose, MD of the Cleveland Clinic and Emory University.
Sign up — secure.nationalmssociety.org/site/Calendar
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmunewith neurologist Deja Rose, MD of the Cleveland Clinic and Emory University.
Sign up — secure.nationalmssociety.org/site/Calendar
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmunewith neurologist Deja Rose, MD of the Cleveland Clinic and Emory University.
Sign up — secure.nationalmssociety.org/site/Calendar
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune
6 reactions 
The newest meds and research aim to stop and reverse damage to the myelin tissue that coats and protects the nerves of the spinal column. You can think of the myelin sheath like the coating on electrical wires that lets them conduct signals properly. Read about the strategies to stop the damage at the earliest possible time and even to repair that coating.
Let go my wires!
www.nationalmssociety.org/news-and-magazine/momentum-magazin...
#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune
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