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    #1

    Patients with MS

    I know I have posted about this before but it is really difficult for me to remain positive about the long term outcome of this disease when so many of the patients I care for with it are in such bad shape.

    Irritates the crap out of me when posters here are all hearts and flowers as if MS is just a blip on the radar. Yeah please tell that to my bedriden, total care, demented 50 year old patient.
    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
    Anonymous
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    #2
    Do you work at a nursing home, Jules? That's where you will see the worst of the worst. . I've had the disease for 32 years, and while I can't really walk anymore, I still take care of all of my ADLs (activities of daily living for those who don't know) .

    I'm not a nurse, but I quit nursing school a year before I graduated. I honestly don't remember ever having one MS patient.
    “The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
    Diagnosed 1979

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      #3
      Originally posted by jazzgirl View Post
      Do you work at a nursing home, Jules? That's where you will see the worst of the worst. . I've had the disease for 32 years, and while I can't really walk anymore, I still take care of all of my ADLs (activities of daily living for those who don't know) .

      I'm not a nurse, but I quit nursing school a year before I graduated. I honestly don't remember ever having one MS patient.
      Hi Jazz,
      I had so many on the neuro unit and now in psychiatry also. Maybe I'm seeing a disproportionate number of younger people with severe cases but it wears on me especially when I come here and it sometimes seems like people just don't seem to get what an awful thief this disease can be.

      I'm glad to hear that you are hanging in there and the ability to perform your ADLs is huge. Had a woman this weekend in her late 50s that looked and moved pretty good with her walker (ha can you believe I had the nerve to write that she looked good?) but when I interviewed her it was clear the diagnosis of cognitive disorder r/t MS had taken her mind.

      Love nursing and most days I can not believe that I get paid to do what I do but MS cases just hit too close to home. Thanks for "listening".
      He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
      Anonymous

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        #4
        I agree

        Originally posted by Jules A View Post
        I know I have posted about this before but it is really difficult for me to remain positive about the long term outcome of this disease when so many of the patients I care for with it are in such bad shape.

        Irritates the crap out of me when posters here are all hearts and flowers as if MS is just a blip on the radar. Yeah please tell that to my bedriden, total care, demented 50 year old patient.

        I totally agree with you about this!!! Even though I haven't been directly involved with patients, I've worked in health care for 20+ years & just reading the documentation related to advanced cases of MS is heartbreaking & extremely frustrating since we haven't come up with a cure for it (yet.) I just left a part-time job because it was wearing on me (emotionally) & many of the patients were in the late stages of MS. My other job deals with a different patient population so I get to forget about it for at least a little while. This disease is not to be taken lightly, though.I'm definitely sure about that.

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          #5
          unfortunate

          Your are unfortunate to be in a position that you are going to seeing some of the worse cases of MS. Rather then being mad at the people paiting flowers about MS and how it is just a blip on the radar, you need to use that as a positive thoughts, rather then what you are seeing.

          That is where you need to focus. Think about the other patients that you are seeing. You are seeing some of the worse cases with those diseases too. Think of the numbers of that do do well with their disease. I know it is not easy, but you got to find the way to look at the positive.
          God Bless and have a good day, Mary

          Comment

            #6
            Originally posted by Jules A View Post
            Hi Jazz,
            I had so many on the neuro unit and now in psychiatry also. Maybe I'm seeing a disproportionate number of younger people with severe cases but it wears on me especially when I come here and it sometimes seems like people just don't seem to get what an awful thief this disease can be.
            Maybe we get it, but we want to keep the head up high. A few weeks ago when I was in the hospital, I joked with the nurses, I cared for the older woman in my room, I cared for the man one room ahead with alzheimers that used our free bed as a toilet *g*. And I was always on the run .
            I will have enough time to be scared of what will be when it is near. Who knows? Maybe not the MS will bring me down but cancer (my greatest fear). Maybe a car will kill me tomorrow. You can't know and why should I worry and worry and forget to live a happy fulfilling life now?

            Greets,
            Karin
            "If you have never said "Excuse me" to a parking meter or bashed your shins on a fireplug, you are probably wasting too much valuable reading time." (Sherri Chasin Calvo)

            Comment

              #7
              Originally posted by Jules A View Post
              I know I have posted about this before but it is really difficult for me to remain positive about the long term outcome of this disease when so many of the patients I care for with it are in such bad shape.

              Irritates the crap out of me when posters here are all hearts and flowers as if MS is just a blip on the radar. Yeah please tell that to my bedriden, total care, demented 50 year old patient.
              RIGHT? i am a homecare nurse,i see 6pts.,daily,and do u know how many i administer salumedrol 2? and some of them are soooooooooooo bad. real bad. I cant do this anymore,its making the ms i have worse.

              Comment

                #8
                Jules and I have discussed this subject before, I liken it to a ford dealer mechanic saying fords are no good because most of the cars he has to work on are fords, his observation is one sided, I am sure there are thousands of people with MS out there that have little to no problem and certaintly not lying in a hospital or nursing home.

                I personally know one man who was diagnosed in early 90's and has had one ON attack in that entire period, with no meds for it either. he is a carpenter and climbs ladders and around roofs all the time.

                Not saying all Ms'rs are like that as it would be like me making the same type of observation you are making I understand many have major problems.

                My concern is that newbys coming here for guidance are going to have the **** scared out of them and thinking they are going to end up a physical vegtable. Is it possible yes is it a guarentee No. As I have said before nursing home nurses see people with diabetes who have lost limbs but does that mean everybody with it will?
                Plan for the future, but not too hard; it’s not your decision anyway

                Comment

                  #9
                  I was dx in 1992, before they had dmd's for this. I worked on a medical floor and saw many many patients with MS. It scared me then as being newly dx, and seeing what the disease can do.

                  Now, 20 yrs later, I am just feeling how MS can work. I had a very pleasant 20 yrs. I didnt understand MS fully until this past October when I had a huge flare and then again in December when I had another huge flare which has now left me with right sided weakness and tremors and walking with a walker.

                  Its like I was just dx, because all these sx, and none of them are going away this time. Now I feel like I have MS. If I would've let those MS patients condition influence me, I would've given up hope all those years ago.

                  As you must know, MS affects everyone differently. Just because the end stage was like that for them doesn't mean it will be the same for you, me, anyone. Positive thinking is some of the best medicine for this disease.

                  Call it flowers or whatever, but I am determined to look at this in positive light, because if I don't, Id be miserable and give up. I dont look at what I can't do anymore, I look at how I've changed the way I do things.

                  I dont work anymore, but Im not useless. This disease takes so much from us, but Im determined that it won't take my positive attitude!

                  Comment

                    #10
                    pjs, that was so well said, got me a little choked up.
                    RRMS 2005, Copaxone since 2007
                    "I hope to be the person my dog thinks I am."

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