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As we All Know MS Sucks.

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    As we All Know MS Sucks.

    Well went to Shepherd Cnter for my Tysabri yesterday. Saw the Nurse Practioner. Got an RX for Baclofen and they talked about Ampyra as well. They also filled out the paerwork for me to take to my county Tag Office for a Handicapped Permit. I am okay with the Baclofen. Not really sure about the Ampyra. Do not really want the Permit. I feel like getting the Permit would be giving in to this horrible disease. Any Thoughts?

    #2
    I have no experience with Baclofen or Ampyra.

    However, I do have a handicapped parking tag. I use it very seldom. I live in a somewhat small community (under 20,000) and we don't have huge parking lots. It is useful, though, when I go into the city to attend a concert or go to a large shopping mall and all of the close parking spots are taken. I feel like I need to conserve my energy for the walking that is to come.

    I don't use my parking tag just to get a spot adjacent to the door when there are others that are not a long long walk away. I like to save them for those who need them more than I do.

    Sometimes, though, I've used it when we go out to eat at the cafe at the local golf course. If it's a busy golf day, the regular spots that are close are all full and there are three empty handicapped spots right by the door. I assume that most of their golfers are not disabled, and I don't even feel guilty taking a handicapped spot when there is one empty regular spot close to the door. I'm guessing that the next non-handicapped person to pull into the parking lot will be glad that I left it open.

    It's also useful to load or unload a vehicle and then move it to another spot when I'm done to leave it open for someone else.

    I didn't ask to have MS. I am on SSDI and I have it for a reason. I don't feel guilty about using this perk occasionally if I respect those who need it more and not over-use it when I don't really need it.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    Comment


      #3
      Yeah. I did not ask for MS either. It was a really cruddy Christmas present. I will get the Permit, but I will not use it unless I go somewhere that I will need to conserve energy. When I go to Drs usually my famly goes with me so if I need it they can just drop me at the door and then go park.

      Comment


        #4
        Good for you. I have two and keep one in the glove box in my car in case I need it and the other one in the house in case I wish to take it with me when I'm riding with someone else. It's nice when I need it.

        Just a piece of advice. Mine is permanent, but it needs to be renewed once every five years (used to be every three years, I think). In other words, as long as I renew it prior to its expiration date, it's good forever. But, I didn't realize, the first time, that if I did not renew it prior to the expiration date, I'd need to go get my doc to sign the form again. Because I didn't use it often, I didn't feel any urgency to take care of it right away, so then I had the inconvenience of getting the form signed again. Wish I'd known that before.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          I use my permit often! It is just a little thing that makes my life a bit easier from the many other things that aren't quite so fun.
          Brenda
          Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

          Comment


            #6
            Hi lukeduke,

            I feel like getting the Permit would be giving in to this horrible disease.
            It's not giving in. Using a Handicap Placard and/or Plate allows you the ability to continue doing what you need or want to do without using all of your energy to get there.

            After I was diagnosed I made a comment (jokingly) to my Neurologist about using HC parking. He said you really need be using HC parking, get me the form and I will fill it out. Umm, that was not what I was expecting or wanting to hear. For pete's sake I was only 24 years old So, at 24 years old I had a HC placard and used it. I still use the Placard but it's in my husbands vehicle and I have HC plates on my vehicle.
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment


              #7
              Thoughts

              Baclofen? It and I did NOT agree, but a lot of people see benefits. Fampyra (the Canadian name) is excellent. I truly see a difference taking it. It makes my walking that much easier. I really notice when I miss a dose. Although I'd really rather not be taking any meds.

              As for the parking pass, I get why you feel it's giving in. When I was presented with a cane at age 32, I thought "hell no!". I had to use it for balance and honestly I was depressed for about a month. I remember feeling like I was somehow accepting this new level and giving up on getting better.

              The cane actually gave me back a lot of freedom and energy though. I no longer had to spend so much time hiding my walking issues and just trying to get from point A to point B.

              I imagine a parking pass would make your life easier the same way. If you get one, it doesn't mean it's forever. It's just for right now.

              Those are my thoughts

              Comment


                #8
                Handicapped Permit

                In my state, you can't get a tag/plate unless you can't walk a certain distance, which I can. I would really like to get one because I have trouble when it's really hot and humid out, and also in the winter because my balance stinks and I'm afraid I'll fall. Oh well! I'll survive. Just moaning about nothing!!!

                Comment


                  #9
                  Nah, it is not giving in. It is helping yourself.
                  You don't get many breaks with this disease. Take the few favours that are available.

                  Comment


                    #10
                    Just because you have a handicapped parking permit, doesn't mean you have to use it. On good days I park and walk and, on rough ones, seek out the blue stalls.

                    Of course, you have to take into account that much of the time the handicapped spaces are full. What I find bizarre is that the hospital has the same percentage of spots allocated for wheelchair access as the grocery store. And, as you can imagine, they are always full.

                    I got a permit long before I was diagnosed because of arthritis in my knee but only used it when I would have had to climb stairs. Once in awhile some angry old man with a temporary placard will glare at me for taking his spot. If he only knew. If he only knew.

                    Comment


                      #11
                      I hear what you are saying and I felt the same as you until about my second year of this 'hell'. I was diagnosed in 2009 and started to 'fail' about 2 years later. My job went away, immediately after I announced my diagnosis to my boss. I was on very minimum amount of pills. Now, I take baclofen 3 times a day. I tried taking Ampyra and it wasn't a good fit for me. I couldn't take the stomach upset. I use the parking placard and am grateful for it!
                      I think that you are 'using it until you lose it', and that's fine. Do all that you can now. But take advantage of the 'parking placard' and any other benefit that you can. MS sucks and it will rear its ugly head and 'bite you' in the 'toukas' when you least expect it. Good luck

                      Comment


                        #12
                        Not Giving In

                        I don't feel like the handicap parking tag is giving in at all. My main issue is dizziness and a year ago it was really affecting my driving. So I quit. I also started using a cane at the same time. I felt worse about that and stopped for a while because I didn't want to grow dependent on it. Well, now I have to use it all the time and I am glad that it enables me to get around better. Use everything you can to make life easier in this horrible situation!

                        Comment


                          #13
                          Hi Luke,
                          I can only echo the sentiments that others have shared here. I know that you now have a new family, there are days when you are going to need that extra little help. And if a handicapped parking space gives that to you, take it. On days when you don't need it, tuck that placard away.

                          One of the MSW volunteers, BobOP has used Baclofen for a long time, and is actually an advocate and I'm sure can answer any questions you may have about it.

                          Good luck with everything.

                          Comment


                            #14
                            Hi Luke,
                            I agree that you should take the benefit a parking pass would give you. Conserve energy whenever you can.
                            i haven't tried baclofen but have been on ampyra for a few years. Never had any side effects from it and it helped me keep walking for sure. Recently I felt it wasn't helping anymore. It used to be if I missed a dose I would know pretty quickly. My legs would ache and fatigue very easily. Now I always feel that way so thought it wasn't doing anything anymore. My doctor had me stop taking it to see what happened. Within a couple of days, I couldn't walk up a short set of stairs. Had to sit down and get myself back down them. Needless to say, I'm back on it.
                            It doesn't work for everyone but worth a try.

                            Comment


                              #15
                              Take all the help you can get

                              I resisted every step of the way at first. When my neuro said I needed a walker, I said no way, until I fell a couple of times. When I was prescribed a wheelchair, I cringed, but I quickly discovered that it really helped to conserve my energy, and I could get out and do a lot more with my family. I don't use it all the time, mainly when I'll be out for a while. Same way with the HC tag, by the time it was offered, I didn't hesitate to accept it, and I don't hesitate to use it. Heck, I AM handicapped, and I'm not ashamed of it. It's not something we chose, after all, who would?

                              I take both Ampyra and Baclofen. Both work well for me, though Metaxalon helps me more than Bac. As others have said, I can really tell a difference when I miss a dose of Amp. I pretty well am confined to the wheelchair then. I think it's worth a try, you can always quit it if it doesn't work for you.

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