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Thread: What would you like to see...?

  1. #1
    Distinguished Community Member Cherie's Avatar
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    Default What would you like to see...?

    What would draw you to a patient education program?
    What content in that program would send you home more satisfied?

    I have been doing programs for several years now on lifestyle changes that can help manage MS symptoms as well as how to make the most of your Dr. visits.

    Is it time to add something on symptom management?
    If so, which are symptoms that you never hear enough on how to manage?

    Thanks in advance for any thoughts you may have on this subject.

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  3. #2
    Distinguished Community Member Sunshine's Avatar
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    Over the years, I have had the pleasure of hearing about the programs you present. You cover all the bases that I would hope to want to hear about.

    Maybe issues of isolation, being handicapped in an able world by someone who gets it, like you do... But, If i recall right, you already have had info on that at presentation, right?

    There is a fun article on what not to say to someone with a chronic illness and what to say....and what its like to be able bodied and not know how to relate to a handicapped person for fear of offending in some way....

    maybe something about becoming an expert at accepting help as a true mark of independence: the irony is that by embracing our need for help, we are more independent than when we fear dependency and hence push away help and further our isolation...

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  5. #3
    Distinguished Community Member Cherie's Avatar
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    I do touch on these things and will continue to. I am also opening the floor briefly for discussions on Medical Cannabis and sharing concerns that I have heard from the Medical Community as well as some experiences some with MS have shared as to what works best for them.

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  7. #4
    Distinguished Community Member Lazarus's Avatar
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    One thing I have thought about a lot. There are many things we do that make life more complicated/difficult for our family, friends or caregivers. In vain and stupid efforts to not use a cane or walker we force everyone to watch over us, gasp as we stumble and even restrict where we all spend time together.

    When using a wheelchair, cane, walker or taking medications on a schedule that frees you for the night it also frees those who love you. I think some of us have a warped idea that it is noble to resist using aids. Maybe a workshop to knock us down a peg or two and encourage us to refocus.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  9. #5
    Distinguished Community Member Cherie's Avatar
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    Linda,
    I LIKE that!! Thank you.

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  11. #6
    Distinguished Community Member agate's Avatar
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    I have a distinct impression that many people find that MS makes a severe dent in their pocketbook. I've read many accounts of bankruptcies, loss of property, used-up savings, and skyrocketing debt thanks to the inability to earn a living wage that many with MS experience--and of course there are the costly medical bills and insurance premiums.

    Maybe a presentation showing ways of getting along with far less money than before MS would help quite a few people. Not just advice on budgeting but what resources might be available--ways to save on utility bills and housing and transportation, for instance. These areas are ones many have to learn by trial and error or by word of mouth--neighbor passing information along to neighbors (which is how I found out about the government-issued free cellphones/smartphones).Surely there could be shortcuts to this kind of assistance when someone with MS is facing a financial crisis.

    The cost of housing is often what breaks someone facing a chronic disability. People with MS can learn more about these resources and learn how get them.

    These resources are here for us in the US. It's a shame that more people aren't aware of them.
    Last edited by agate; 07-11-2019 at 05:17 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  13. #7
    Distinguished Community Member Cherie's Avatar
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    Thank you Joan. I will pass that information on to the powers that be. There are people doing talks and webinars on just that subject. It is not within the purview of a Nursing Talk, however. I do believe it is vital topic to present though. I have cut and pasted your comment (no ID) into emails to both the educational staff at MSF and MS Views and News. Maybe we can put our heads together and get this information into the form of a helpful presentation.
    Last edited by Cherie; 07-12-2019 at 07:33 AM.

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  15. #8
    Distinguished Community Member agate's Avatar
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    Thank you, Cherie.

    If there is one lifestyle change that has meant the most to me, it is learning to slow down. It's a hard lesson to learn for anyone living in this fast-paced time when there are often deadlines to be met. I'd like to see a presentation on the many ways in which a person can and should slow down, even if it mostly boils down to realizing that most tasks and activities can be interrupted/postponed without the world coming to an end.

    If I try to rush anything I'm doing, I'm almost certain to make a mistake, drop or spill something, or injure myself. Just now I have a rather unsightly bump on my head from hitting a cabinet the other day when I was in too much of a hurry.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  17. #9
    Distinguished Community Member Cherie's Avatar
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    Joan,
    I have gotten one answer to my inquiry about the question you posed on finances just a few minutes ago. The word is that resources vary from State to State and within that from County to County and City to City so these resources are VERY dependent upon what is available in a specific location. NMSS Navigators can often help locate resources in a given area as can the MSF offices.

    Oh...and slowing down is important. Too many people want what they had before instead of learning to use to the fullest what they currently have (and sometimes that can be even better if they would just look at what they have rather than what they don't have).

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