costs and insurance

Money Matters when you have Multiple Sclerosis

Mandy Crest Health Guide April 02, 2009
  • I was raised on the premise that money matters should not be discussed in a public forum. It was best to keep such things close to home.    Multiple Sclerosis and money, unfortunately, go hand in hand, and it's difficult to have meaningful conversation about MS without mentioning money.&n...

6 Comments
  • Lisa Emrich
    Health Guide
    Apr. 02, 2009

    Mandy,

     

    I had not thought to mentally collect all of the items purchased to help assist in protecting quality of life and physical abilities after MS came to roost.  It's interesting how my items (some included below) focus around two issues.

     

    Portable Air Conditioner/Heater for the music studio

    Dehumidifier for the music studio in the summer...

    RHMLucky777

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    Mandy,

     

    I had not thought to mentally collect all of the items purchased to help assist in protecting quality of life and physical abilities after MS came to roost.  It's interesting how my items (some included below) focus around two issues.

     

    Portable Air Conditioner/Heater for the music studio

    Dehumidifier for the music studio in the summer

    Cooling equipment, including various sizes of gel icepacks and clothing

    Two folding 6 inch, battery operated, portable fans

    Lightweight, wicking clothing for summer and sleep

    Large-brimmed hat

    Light-weight, breathable jacket and other various clothing items

     

    Cane

    Sensible shoes

    Orthopedic inserts for shoes, specially made

     

    Annual pass for the county reccenter for access to the swimming pool (although I need to renew and get back in the water)

    Various swimming paraphernalia: flippers, goggles, webbed gloves, bag to hold all

    Select assortment of light hand weights similar to ones used in Occupational therapy

    Specialized finger/hand strength and training tools (extension of OT)

    Wii Fit (received as Christmas present)

     

    Various reaching devices, kitchen tools, writing tools, and one of the most helpful when needed:  an alarm clock just for the living room and afternoon naps

    • momdukes
      Apr. 02, 2009

      Money Matters

      Speaking for myself, I have had to remove the bathtub out of my bathroom, and install a shower stall.  Now I must admit that the shower stall is prettier, and I was able to get a neighbor who does construction work who was more than willing to remove the tub and install the shower stall because he has known us for years.  But not everyone...

      RHMLucky777

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      Money Matters

      Speaking for myself, I have had to remove the bathtub out of my bathroom, and install a shower stall.  Now I must admit that the shower stall is prettier, and I was able to get a neighbor who does construction work who was more than willing to remove the tub and install the shower stall because he has known us for years.  But not everyone is so fortunate.  Now I am in need of a kitchen renovation.  I need a dishwasher in order to help my husband out, I need a deck, so that I will be able to enjoy the out doors this summer, I would need my deck to be screened in or the bugs will take me away.  It would be like wild kingdom out there without the screen for protection.    We hear so much talk about health care reform, but yet there are so many that are still suffering.  When I went and applied for disability, the lawyer that I went to was so honest, and I found that to be rare and refreshing.  She informed me that even though she handles some disability cases but those are not her main targets, unfortunately she has worked on some cases where her client has even died, and she was able to win the benefits.  When she told me this I sensed anger in her mood.  She apologized.  I told her that there was no need to apologize.  To me some things just do not make sense.  Unecessarary suffering, and depriving people of what they need just to live.  We are suppose to be the greatest nation, but yet we have just as much suffering as any third world country, we just diquise it better.  We send money to other countries to help their people in need, and we should.  But I also think, that first we need to really clean up around our own front door.  Provide for those that are truly in need, MS or whatever the illness, make life easier.  You never know what life has in store for you sickness could be around the corner, we didn't know.  If you get us better maybe there will not be such a burden on the healthcare budget, think about it like my grandpa use to say "Run around here with your head knotty and your nose snotty, you had better ask somebody."  We need to look at other nations and the suffering that is going on in their countries.  We will either pay now or pay later, but if we do not take care of our own; we will pay the ultimate price later.  Unfortunately it could happen to you, we hope not, it happened to us.

      Your article is excellent, and lends excellent information which I am going to use.  I know that it will be helpful to many, I am just bothered at how sickness is just thrown to the side in our country not just for MS patients but for anyone who is fighting and illness that causes a life hardship.  But your information will certainly help out a great deal!Kiss

    • Mandy Crest
      Health Guide
      Apr. 02, 2009

      Momdukes:

       

      You've managed to come up with even more expenses related to MS disability -- ones that are not necessarily obvious to the casual observer.

       

      Thank you so much for talking about the state of health care in the United States. We need all the voices we can get in order to get our message out. I believe change is coming. I also believe it...

      RHMLucky777

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      Momdukes:

       

      You've managed to come up with even more expenses related to MS disability -- ones that are not necessarily obvious to the casual observer.

       

      Thank you so much for talking about the state of health care in the United States. We need all the voices we can get in order to get our message out. I believe change is coming. I also believe it will come in small doses, but ANY progress at this point would be welcome. Silence equals acceptance, so let's keep shouting!

    • Mandy Crest
      Health Guide
      Apr. 02, 2009

      So you have sensible shoes as well? I must admit that I miss wearing stylish heels, but I wouldn't attempt them for anything. A little style can't overcome the embarrassment of trips and falls!Wink

       

      I hadn't thought of some of the items on your list. I'm sure there are people who do not have MS who would read your list and wonder why swimming equipment and...

      RHMLucky777

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      So you have sensible shoes as well? I must admit that I miss wearing stylish heels, but I wouldn't attempt them for anything. A little style can't overcome the embarrassment of trips and falls!Wink

       

      I hadn't thought of some of the items on your list. I'm sure there are people who do not have MS who would read your list and wonder why swimming equipment and cooling devises are an MS-related expense. After all, they like to swim and they feel the heat, too.

       

      This is a great opportunity to let people know who badly we can be affected by the heat. Pseudo-exacerbations brought on by heat do not necessarily cause permanent neurological damage, but can cause severe symptoms. Earlier on in the course of my MS, I had the misfortunte of indulging in too much summer sun and paid the consequences. It was rather frightening.

       

      Thanks for adding to the list, Lisa.

  • Anonymous
    Patricia
    Apr. 02, 2009

    Hi Mandy!  This is a timely article as after my husband picked me up from work today, I finally purchased that cane that I have been putting off for so long.  We will be ordering a lightweight folding wheelchair soon as well.  Add to the list, travel costs to my neurologist who is 90 minutes from my home.  I also will be looking into...

    RHMLucky777

    Read More

    Hi Mandy!  This is a timely article as after my husband picked me up from work today, I finally purchased that cane that I have been putting off for so long.  We will be ordering a lightweight folding wheelchair soon as well.  Add to the list, travel costs to my neurologist who is 90 minutes from my home.  I also will be looking into purchasing special clasps for my necklaces and braclets as those are getting hard to fasten. I think a shower chair is in my future as well. 

    On another note, I spent a few minutes today at work speaking with one of my compassionate co-workers who is trying to understand MS.  I explained how exhausting it is to get ready for work in the morning, how I almost need to crawl back into bed and that instead I get up much earlier than necessary, get ready and then rest awhile before heading to work.  It was very interesting then to come home and hear our new First Lady, Michelle Obama, addressing a group in Great Britain regarding her father's struggle with MS.  How difficult it was for him to get up and get to work, and how he needed to get up earlier to accomplish this.  I believe we have the agents for change in the White House now, and I hope and pray that healthcare reform will be on the way.  

    • Mandy Crest
      Health Guide
      Apr. 03, 2009

      Patricia,

       

      Just this morning I said to my husband that I should just give up on necklaces because I have such a hard time with the clasps. You are right -- there are devices that can help and I'm going to have to look into that. Thanks for the reminder.

       

      I didn't hear what Mrs. Obama said in Great Britain, but I agree with you the first family represents...

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      Patricia,

       

      Just this morning I said to my husband that I should just give up on necklaces because I have such a hard time with the clasps. You are right -- there are devices that can help and I'm going to have to look into that. Thanks for the reminder.

       

      I didn't hear what Mrs. Obama said in Great Britain, but I agree with you the first family represents change for health care, and a real understanding of the problems we face. For the first time, I feel fairly optimistic that health care reform is on the way. I also believe that it will come in small doses over a very long period of time, but I'd rather have it come slowly than not at all.

       

      The journey of a thousand miles begins with a single step.