Episode 408: Explaining Your MS to All Those Well-Meaning Family Members and Friends Who Get It Wrong with Kris Inman
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Have you experienced those familiar feelings of frustration when the people closest to you don't seem to get your MS? Do you find yourself explaining and re-explaining things to well-meaning friends, co-workers, and even family members?
Kris Inman's wife, Mariah, was diagnosed with MS in 2020, and, since then, Kris has been Mariah's care partner and an active member of the MS community. This week, Kris joins me to talk about overcoming the challenge of helping your friends and family understand what an MS diagnosis means and what living with MS is really like.
We're also sharing research results that show that someone's age at the time they experience the first symptoms of MS can determine whether they experience a better physical or mental health-related quality of life.
We'll tell you about a report issued jointly by the MS Society in the UK and the Work Foundation at Lancaster University that details specific challenges people with MS face in the workplace.
We'll give you the details about the National MS Society's Fast Forward investment in Neurogenesis, a biotech company developing a proprietary stem cell therapy designed to treat progressive MS.
And we'll share news about the Portable Neuromodulation Stimulator (PoNS), a device that's used in combination with physical therapy to reduce walking problems for people with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The frustration you might feel when some of the people closest to you don't really seem to get your MS. :22
Study results show that the age of MS onset can be predictive of physical and mental health-related quality of life 1:27
A report details challenges faced in the workplace by people living with MS in the UK 4:28
The MS Society's Fast Forward program has made an investment in Neurogenesis, a biotech company developing a proprietary cell therapy designed to treat progressive MS 8:00
Aetna Healthcare has become the third major private insurer to offer reimbursement for the PoNS device 11:00
Kris Inman discusses the finer points of being an MS care partner 14:17
Share this episode 29:13
Have you downloaded the free RealTalk MS app? 29:32
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LINKS
If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com
Become an MS Activist https://nationalmssociety.org/advocacy
Act Now! Contact Your Senators About Medicaid and Health Coverage https://nmss.quorum.us/campaign/127768
STUDY: Age of Multiple Sclerosis Symptom Onset Affects Mental and Physical Health-Related Quality of Life in Opposite Directions https://sciencedirect.com/science/article/abs/pii/S2211034825003037
REPORT: No Compromises: Supporting People with MS to Thrive In and Out of Work https://www.lancaster.ac.uk/media/lancaster-university/content-assets/documents/lums/work-foundation/reports/WF_MSSNoCompromises-SupportingpeoplewithMStothriveinandoutofwork.pdf
Neurogenesis https://neurogenesis-cell.com
The Portable Neuromodulation Stimulator (PoNS) https://ponstherapy.com
Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms
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RealTalk MS Episode 408 Guest: Kris Inman
457 episodes