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    #16
    Another year...

    I saw my post from March of 2018, and it made me sad. I've just used another of dwindling years to learn how to live with this disease. Anyone who thinks it easy, just envision difficulties with things like trips to the porcelain altar in the middle of the night and such as that. Finally after all this time, I get the feeling that I've got it figured out. First, and most important, there is no middle of night. Just another interruption of sleep. Now just roll with the punches, they will not stop, but if they do it may well be a bad sign. Getting everyday activities of like these have been accomplishments I've done by myself. Because most people who say they would like to help with them have no clue. It is assumed that I already have done it.

    Going forward, it is another learning experience that no one can really help me with, since they automatically assume that I've got it under control. This is how do I continue functioning while being completely run down all the time. Get out the rear view mirror and see that I have done this, successfully for a long time.

    Now, today we can interject this coronavirus debacle. I've done some of this, expressed my feelings about things and got suspended from twitter for it. One account; I have two, so no problem. I can still spew anytime I want to there. But, just in time to coincide with spring time weather, when I should be out there moving around, here comes micromanaging governamental types saying "stay safe, stay home". Absolutely the last thing I needed. Oh, and be sure to wear your mask. I refuse to wear a mask. I am confident that I have the antibodies, I believe that I have not had the flu since 1981, which is when I had mono which spawned MS in my case. Now, how could I prove this?

    So I press on, with the goal of getting mobile. All of this virus crap represents just another in a long line of hurdles that I have to clear. And it's cost a considerable amount of time but I'm still here. It is well advertised that "MS keeps people from moving". I'm gonna be the poster child for getting over the hurdles. Keep moving, it may not happen overnight but make it happen. And learn things along the way too.

    Maybe I sound positive here, and many friends have called me a dreamer because of this. It does not hurt to dream. Only to wake up and find that it was only a dream. I don't sleep much, and that may be a good thing after all.

    Dave Hall

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      #17
      Originally posted by Dave Hall View Post
      It is well advertised that "MS keeps people from moving". I'm gonna be the poster child for getting over the hurdles. Keep moving, it may not happen overnight but make it happen. And learn things along the way too.

      Maybe I sound positive here, and many friends have called me a dreamer because of this. It does not hurt to dream. Only to wake up and find that it was only a dream. I don't sleep much, and that may be a good thing after all.
      Keep moving, stay positive, and it does not hurt to dream - well said, Dave.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #18
        Hi Dave
        Glad to see that youíre hanging in there, continuing to advocate for yourself. I am also SPMS but on Ocrevus just in case. Covid-19 has certainly presented us with additional challenges. Connecting with the outside world is hard with mobility issues as it is. It puts us at a disadvantage to start with. Itís difficult to see the light at the end of the tunnel, but itís there!

        Paula

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          #19
          Hello Dave, Yes you do sound positive and I hope you do get over the hurdles and reach your dream.

          I love your line "and learn something along the way". I hope it is good.
          God Bless Us All

          Comment


            #20
            Originally posted by Dave Hall View Post
            But, just in time to coincide with spring time weather, when I should be out there moving around, here comes micromanaging governamental types saying "stay safe, stay home".
            I encourage you to get out in the spring weather. Just keep your social distance from others. And, please, wear a mask. Whether or not you believe you need one, right now, it is the socially responsible thing to do.
            ~ 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


              #21
              [QUOTE=Dave Hall;1524742]
              Originally posted by Dave Hall View Post
              ...since I communicated here. In process of digging through the layers of paper that accumulate, I find some interesting stuff that didn't get read at a proper time; such as when seeing a doctor about eye problems. My vision being doubled is why I can't have a driver license, and I used to drive for a living. Not fun. This diplopia is what got me to an ophthalmologist in the first place, resulting in "finding" cataracts, and subsequent surgeries to repair these.

              I dunno if this doctor can read, but I can and I should have told this doc to look at the chart from my initial diagnosis. I have what is called a skew deviation. Also known as strabismus. Never heard of this, and the causes include cerebellar and brain stem stroke. Which "can be" secondary to MS.

              Things that make ya go: Hmmm...

              I've come back from the pile again. This has been a few years running, and as updates go, more news that's not fit to print. Somewhere in this long and rambling series of messages, I indicate a lack of faith in medicine. Boy, did that one ever get more evident. Most recent doctoring event was an annual site visit. First one that I can remember, but that's not important right now. The insurance company that has my medicare supplement sent a doctor. I found his info, and just about fell on the floor. Nice gentleman, might have an idea of medical stuff, physician search says "general surgeon". Okay, gonna amputate this MS thing, eh? He's 93 years of age, drove himself here, has an office (allegedly, I have no idea where this office might be.) In all honesty I had to be impressed that a doctor, who did his first residency at The University of Cincinnati Medical Center the year that I was born, is still able to practice, keep certified, etc. etc. etc.
              Short story getting too long, all he needed to find is that I have blood pressure, and can somewhat move around. I pass!
              On a brighter note I have discs with MRI images that I took dating back to 2011. The quest to find a neuro continues. Other news and changes may well show up in another post on another board here. For now, I have to view this as a positive, even though a doctor without a clue (MS who?) is sent to see me, and only fill in the blanks in a spreadsheet.
              Not giving up, but I still need to find better ways of managing this stupid disease. I don't post too often here, but I use as many words as I can come up with when I do come in here.
              Well, I am back, again with a laundry list of stuff to pontificate on. I dunno if anyone would have a clue of how to keep up with my scatterbrain, and if you can please reply somehow. We can both find some clues.

              I am torn. I would love getting on my bicycle, get on the Route 1 Turfway bus, go to the transit center and just freelance from there, but here in NKY, we are quarantined by some "virus" thing. Talk to me about viri, I have the anti bodies thanks to EBV to just about any virus I could find. I've not even had the flu since 1981. Still, I get stuck at home; if it were not for Doordash, I would have starved to death a long time ago. Even managed to get the rent paid so as to have running water, heat and a/c with internet access reliably for some time.

              Going forward, what can I do? The bus says: Essential trips only. Any restraunt within a mile of me says: Drive through or pick up only. Maybe I get a car? Cannot afford it. Curb side pick up? Yep, need bicycle and backpack (I have these).

              Every state in the union says "One functioning eye is required to pass eye test. Daytime driving only." Might work, I don't like expressways anyway. Thanks to my skew deviation, my pupils no longer react to light. So, if the sun is up, I put on dark goggles? Along with my mandated face diaper, I look like a thief.

              Needful to say at this point; I am frustrated, and jaded. Every time I get to a point that I think I can get out of "the comfort zone" and move forward, something else comes to anchor me down. I have not given up, just keep jumping over hurdles, and after I clear one, there's another. I'm surviving on two hours or less of sleep now, I'm not real sure how much longer I'm gonna last. On a brighter note (!) Doordash is delivering stuff that helps me sleep a little. So far so good!

              Comment


                #22
                Hi Dave ~

                It looks like the pandemic has certainly caused you some extra challenges and hurdles to deal with.

                Good to know that you can have your food delivered, thankfully.

                Hopefully your quarantine will be lifted soon, and things in your area will reopen as well.

                I'm sure you are looking forward to getting back on your bike. I used to be an avid bike rider too, and loved every minute of it.

                In any case, with the pandemic and all of it's challenges, I guess we have to keep reminding ourselves that 'this too shall pass'.

                Wishing you the strength and peace of mind to carry on, Dave.

                Take Care
                PPMS for 22 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #23
                  Originally posted by KoKo View Post
                  Hi Dave ~

                  It looks like the pandemic has certainly caused you some extra challenges and hurdles to deal with.

                  Good to know that you can have your food delivered, thankfully.

                  Hopefully your quarantine will be lifted soon, and things in your area will reopen as well.

                  I'm sure you are looking forward to getting back on your bike. I used to be an avid bike rider too, and loved every minute of it.

                  In any case, with the pandemic and all of it's challenges, I guess we have to keep reminding ourselves that 'this too shall pass'.

                  Wishing you the strength and peace of mind to carry on, Dave.

                  Take Care
                  Thanks, Koko. I posted this on a large glass of Kentucky Straight Bourbon, maybe that was obvious. Now that I have run out of it, I am wide awake, but not much more coherent. Coffee might have been better.

                  I mentioned the driver license, and automobubble. Seems you can live in this "quarantine" if you never get out of your car. Oh well. I can't afford a car, food clothing and shelter at the same time. It became a best bang for a buck item to "live on the rails", bicycle to travel between stations and long stay hotels, and balance these two items carefully. I did in the past drive some incredible long road trips, then went to work in public transit. Never really liked long road trips, a couple hours in and I got tired, or bored. Driving in transit was nothing like a long road trip, a long route was an hour or two one way, layover long enough for a piddle stop and a sandwich, then an hour or two back the other way. I loved that!

                  Call this a dream for retirement. Given that bills are never gonna stop going up, and my pension is never gonna go up, the reality is I have to live cheap. There has to be an answer. And I will keep going.
                  Dave

                  Comment


                    #24
                    [QUOTE=Dave Hall;1527212]
                    Originally posted by Dave Hall View Post

                    Needful to say at this point; I am frustrated, and jaded. Every time I get to a point that I think I can get out of "the comfort zone" and move forward, something else comes to anchor me down. I have not given up, just keep jumping over hurdles, and after I clear one, there's another. I'm surviving on two hours or less of sleep now, I'm not real sure how much longer I'm gonna last. On a brighter note (!) Doordash is delivering stuff that helps me sleep a little. So far so good!
                    Sorry to hear about the hurdles this COVID thing is throwing at you. Yeah; just keep jumping over hurdles, I guess. Thinking about you.
                    ~ 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


                      #25
                      Back again after a significant hiatus. I've learned a few things about how we attempt to get around hurdles of this sort. The question of the comfort zone. In order to grow, one has to leave their comfort zone. Herein lies the difficulty. First, what really comprises a "comfort zone". For my part, it involves having a place to park and rest, that is warm, or cool, depending on the weather. It is nice to have internet access, so as to manage money (if there were any) and the appointments that might come up. So far, this is not a priority, my own belief that secondary progressive MS, described as "end stage", is not very well managed. Spasticity that goes along with any brand of MS is my biggest hurdle. One which I don't find many effective means of managing. Leads me to a self managing procedure which does not involve pharmaceuticals. Lots of coffee, increases the conduction, and means much more pain. But movement is achieved. Then comes the pain management. It's not necessary to describe how I do this.

                      All that somewhat under control, I am still torn. How to move forward? I cannot afford to live anywhere. I past posts in here I have described how family was willing to "help". Until the money amounts came into question. But in the seven years I spent trying to make that work, the things that I identified as ones that I had to do and learn were things that no one could help me with. How to function, a shower, a trip to the bowl? All these little things that are "assumed" to be under control, I was learning to do with legs that wouldn't bend, and at the same time all the fun items that go along with MS affecting these bodily functions, etc.

                      So, now that the bulk of these items have become automatic to a point, back to moving forward. I have in past messages here put out the scenario in which I travel by rail, and get to a point that I stop off and get a long stay room for a few days, or weeks, whichever could be cost effective (I.E. cheap) but to date, I don't get too much feedback on this. It requires movement on my part, and that is the rub at this point. Given all the virus hurdles, transportation doesn't look easy. Have I found my comfort zone to escape from?

                      I seem to find more and better questions everywhere I go, but I would like to get more communicative. I log on here once in a while, chat some, and toss out a message that is very long and wandering. I look forward to any thoughts and replies.

                      Dave Hall

                      Comment


                        #26
                        It sounds like you are still facing numerous challenges. Family doesn't seem able to give you the support you need. I suggest you begin looking for outside resources to help you.

                        Perhaps you could get referrals old agencies that could help connect you with an agency that could help.

                        Perhaps begin by contacting your local nmss, a senior center, even a primary care physician or a therapist. Any of these might be able to refer you to an agency that could help you evaluate your needs and possibly resources. If you consider a therapist, social workers (LMSW) are often skilled in fitting "person and environment".
                        ~ 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

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