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Desired Support Services for Multiple Sclerosis (MS) Sufferers

Lisa Emrich Health Guide January 11, 2010
  • Last week, I posted Top Ten Common Myths about MS - Busted!! which received a good number of responses.  This is such a tricky disease and it's hard to generalize anything which applies to absolutely EVERYBODY.   I believe that it's tough to know what we, as MS patients, REALLY want from ...

5 Comments
  • Vicki
    Health Guide
    Jan. 15, 2010

    Wow.  So many questions.


    The more we see of wheelchairs and awkward gaits, the sooner we will realize people who use mobility aids are normal people who use mobility aids.  I know aids like wheelchairs are particularly frightening and maybe even repulsive to some, but this is because the aids are still unknown to so many people.The unknown is often...

    RHMLucky777

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    Wow.  So many questions.


    The more we see of wheelchairs and awkward gaits, the sooner we will realize people who use mobility aids are normal people who use mobility aids.  I know aids like wheelchairs are particularly frightening and maybe even repulsive to some, but this is because the aids are still unknown to so many people.The unknown is often the cause of fright and horror.


    I have SPMS, I work from my home office, and I use mobility aids.  Currently, I use a wheelchair, but still consider myself normal — could be wrong.  I do call the NMSS and other local groups when I need to ask about some specific.  I agree with just2tired that things needed are often just simple daily needs like cleaning the house.  I have a woman in every two weeks for a good cleaning and clean up afer myself in between. Let's add to that grocery delivery and gopher services. I think people need help with daily life tasks and functions.  I feel very lucky.

  • Anonymous
    Paticia
    Jan. 13, 2010

    I am 55 years old, female & diagnosed with MS in 2006. After being diagnosed I realize that I've had this disease for much of my early adulthood also but was lucky enough that the symptoms were transient and not debilitating as they are now. 

    It is hard to get any answers as to exactly where I stand with what type RR or PSR. I myself believe the doctors...

    RHMLucky777

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    I am 55 years old, female & diagnosed with MS in 2006. After being diagnosed I realize that I've had this disease for much of my early adulthood also but was lucky enough that the symptoms were transient and not debilitating as they are now. 

    It is hard to get any answers as to exactly where I stand with what type RR or PSR. I myself believe the doctors are vague for a couple of reasons 1) They don't know      2) They are careful not to put you in a category that doesn't fit the criteria for the treatment they will recommend.

    I am not happy the way people with MS are represented on TV because they give the general public a false impression. Such as MS patients can readily and easily participate in MS walks, bycycling events, climb mountains &  stairs such as the Rockafellor Center building. Why don't they show the people who barely can walk, who are unable now to climb stairs, who can't balance a bike to ride it. They all look normal but have progressed to what will eventually happen to most MS patients.

    Tell the story about the person who dedicated their entire career helping people in the same hospital for 18 years to only have coworkers create a hostile working envioronment because they thought she was getting special treatment. Or the story of an MS patient who tried to return to work after being on short term disability from an exacerbation only to meet resistance because her immediate administrator took another job and the administration of the facility seeing a way to get rid of her for good. 

    People still don't get it, the message is not being received out in the real world. People do not understand how this disease changes the lives of those affected with it.

    Stories need to be told just like cancer victims or survivors. Our disease might not be what one might consider a death threat, but it is as devestating as any serious disease.

    I would like to see the MS society involved in making sure these MS centers are doing all they can for the patient. Sometimes I feel all they are concerned with if you come in for your infusion or stay on a MS medication. I've been to two well established MS centers and didn't feel the confidence I should because the doctors never seem to directly answer questions because they don't have the answers. I've complained about new pain i developed and it basically gets ignored.

     I am on Tysabri and a lab result came up positive with the BK virus and nobody knows what it means!? Don't worry though it was recommended that i stay on the medication & not miss an infusion. The drug company who is supposed to be monitering closely this medication was of absolutley no help to me but wanted to have the information to put in their data. I could go on & on. I would like to see more wellness centers along with the MS centers with staffing of PT's who are specialists with people who have MS. We need help stretching and need massages as treatment because of our special needs. The general public does not have enough information & most of them don't know what having MS means not just what it is. 

  • Maris B. Mohr
    Jan. 12, 2010

    Lisa,

    Since I live in Israel there are a few questions I can't answer, but most of them are univeral. Here goes:

     

    1. SPMS

    2. Retired on disability from teaching h.s. in 2002. Since then some private remedial teaching at home, some translations.

    3. Yes: a stick for walking short distances out the house; a rollator for walking longer distances; an electric...

    RHMLucky777

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    Lisa,

    Since I live in Israel there are a few questions I can't answer, but most of them are univeral. Here goes:

     

    1. SPMS

    2. Retired on disability from teaching h.s. in 2002. Since then some private remedial teaching at home, some translations.

    3. Yes: a stick for walking short distances out the house; a rollator for walking longer distances; an electric buggy for getting around our small town.

    4. Only internet sites, forums, etc.

    5. I believe most people would benefit if municipalities made street crossings and building friendlier to people with physical disabilities.

    6. ditto

    7. Friendly internet sites and places to meet, learn from and socialize with other MSers who understand what I'm about.

    8. blank

     

     

     

     

  • just2tired
    Jan. 11, 2010

     

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    RHMLucky777
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    Hello Lisa!  I love it when you ask questions!  I will do my best to keep it short and sassy!

    1. What form of MS do you have? (ie. RRMS, SPMS, PPMS, PRMS)  Well, one doc says I have RRMS, but my primary care doc says SPMS (as do I).  I am never without pain or displaying some symptom or other like drop foot, jerking head, kicking, etc.

    2. Do you work outside of the home? (yes, no)  No-although my employer State of WA Dept of Corrections did make many efforts to accommodate me.  SO I sort of medically retired, and on SSI and Medicare.

    3. Do you use mobility aids most of the time? (yes, no, what type of aid) Yes, I use my canes the most, but I am so glad I have a motorized wheelchair for shopping trips, events, etc.  What a lifesaver!

    4. Have you ever taken advantage of ANY support services of NMSS, MSAA, MSF, MSfriends, etc? (yes, no, please explain)  Yes, the MSAA (or was it the NMSS) sent me some nice items to help keep me cool and I bought some of the MS ribbons and magnets fir gifts and for myself.

    5. What support services do you need RIGHT NOW which would make your life easier?  Well, I could really use some help cleaning the house.  My walls need cleaning as does my carpet and other things.  But I live in a rural area and cleaning services are not available down here.  There is one cleaning service about 30 miles away, but way to expensive.  So I have a deal with my older granddaughters to come one or two weekends a month to do the heavy cleaning for me providing I have the money available to pay them.

    6. What support services have you needed but which were NOT available to you?  Since my husband makes more than poverty level, and I make too much in SSI, I cannot get help for paying for disease-modifying therapies.  The co-pay with my Part D insurance is $500+.  We cannot afford health insurance for my husband at work, much less putting me on a policy.  Therefore I had to quit my Copaxone therapy about 18 months after starting it.  I have not had any MS modifying medication since 2005, I only have medication for pain.

    7. What support services have been MOST helpful and meaningful to you?  Just being able to be in all the forums and MS websites has been a tremendous help over the years.  I can usually get an answer to my questions, plus I share my experiences with everyone else and when I am able to help someone, it is the most satisfying feeling in the world!

    8. What would you say to the president of NMSS about how MS affects your life?  All of us out here with MS are dying.  Not the way cancer kills, but a little at a time.  I die a little every time I have to have someone try to guess what I am trying to say, I die a little every time I have to tall my family I can’t go there or do this because the consequences would be too much at that time, I die a little every time my limbs start misbehaving in public, the list is endless.  BUT every day I LIVE – I live because I am learning something new every day, I live because I can help others like myself, I live because I can stay home and just snooze with my cats, I live because I have more time and love to give my husband than I did when I worked full time, I live because I can still laugh at myself, I live because I can dance in my wheelchair, and I am thankful that I have MS, Fibromyalgia, COPD, Osteoporosis, Osteoarthritis, Chronic Fatigue Immune Dysfunction, et al because I would not have learned or loved or lived as extraordinary as I have with them.  Yes, I have to be careful, stay away from folks that are sick, I have to use a sippie cup because I an forever spilling and knocking drinks over, I have to pick and choose the times when I CAN go see a movie (have to wear ear plugs) or visit the kids or go shopping or even vacuum, and another list that is endless.  I also believe, I just know, that I will be cured.  I have learned patience – something I have never had much of, tolerance, forgiveness and that love is everywhere, you just have to open your eyes.  Ain’t LIFE grand????  It sure is!  Even when life sucks it is still grand – just because!

     

    Love and Light to All,

    Jan

     

    PS-Well, you asked...

     

  • momdukes
    Jan. 11, 2010

    I have relasping Remitting MS I think, it is the mildest kind, if there is a mild kind. The other questions 1 & 2 do not really apply to me just yet.  Right now I am pretty self sufficient.  But there is one thing that I would love to see the MS Society and the others attend to.  That is helping people with MS get approved for disability...

    RHMLucky777

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    I have relasping Remitting MS I think, it is the mildest kind, if there is a mild kind. The other questions 1 & 2 do not really apply to me just yet.  Right now I am pretty self sufficient.  But there is one thing that I would love to see the MS Society and the others attend to.  That is helping people with MS get approved for disability quicker than a 2 or more years wait.  Some things just do not make sense.  They know, we are not going to get any better. they know, SSI knows, and the doctor knows that there is no cure for this diese.  It does not get better with time only worst.  Once a person has been DX it should be approved toot sweet!  They repersent those of us with MS, we support them, they need to reach out and return the favor.  Just my thoughts.  sherry/smomdukesKiss