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Calling all Seniors - aging and MS

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    #61
    Lumps, bumps and aging

    There's that saying about the Golden years that lays it all out.

    Remember that old folks are worth a fortune-with silver in their hair,
    gold in their teeth, stones in their kidneys, lead in their feet, and
    gas on their stomachs.


    Or to that effect :-) Sad, but true. My FIL used to say "gettin' old ain't for sissies". How true. Then what can we say about 'getting old with MS'? Well, the good thing is that we are here and even though aging, we are still here.

    No one said it will be easy. The times are challenging to say the least. Sometimes I can barely stand to watch the news and frankly I no longer think it is my duty. I watch to keep up to date on the rumblings in this ol' world, but I know all I can do is cherish my vote and when the time comes vote wisely.

    My own thoughts is that I don't need someone to promise me freebies. A helping hand when justified is fine.

    Anyway, considering my MS I'm doing okay. I'm not the Grandma I'd wanted to be, but I'm Grandma and can still put cookies in the oven and do a few fun things. I have great sons, a great DH and so why complain? (Okay, yesI do that; I admit it. Heck, I'm grumbling right now because my dern fingers on my left hand will not co-operate andinstead of 'shift' I get the Ctrl key and hence italics....grrrr. The right fingers love to get stuck between the keys or hover in the air 'thinking' which key they want. I used to be a secretary (yeah, dinosaur) and type a lot; hands flying over the key board. Ha, ha....

    No more. Oh well, I did manage to post this! So, I'm just saying 'Carpe Diem' (Seize the Day!)

    Diane D
    You cannot dream yourself into a character; you must hammer and forge yourself one.

    Comment


      #62
      This is beautiful. No regrets

      Originally posted by Echo2099 View Post
      Life as an Adventure

      I'm 59, female, 5 ft. 4in. and weigh more than ever at 140lbs. In 2007 I was DX with RRMS, as of February 2012, I have SPMS. But before 2007, I had a life.... a real adventure.

      I'm told that as a child, I grew up with two beliefs. One... 'don't let it be said that I failed, because I did not try'; so I tried everything. And number Two.... what doesn't kill you, makes you stronger; so I tried very hard to be strong.

      With those two beliefs ruling my life, my parents suffered greatly, both emotionally and financially. As most parents do, they loved me and coached me, worried about my safety and my well being, supported me and encouraged me.

      However, I didn't make it easy on them. Unlike most toddlers, I didn't learn to walk but rather I learned to run...full bore and all out. I was always getting into places and things I shouldn't have.

      By the time I was sixteen, I had been in life threatening anaphylactic shock twice, had a broken arm, a broken leg, a broken clavical, three broken ribs, a broken wrist, four concussions, and two skull fractures. My parents (God rest their souls), suffered through it all.

      Over my lifetime, I've usually had challenging jobs; I loved learning, and I could learn new things quickly and efficiently. If I could have been employed as a student, I'd have been Employee of the year! I taught myself to play the piano, to draw, paint, weld, wood carve, sculpt, and to take photographs. As I said, I liked to learn, so I read as many books as I could to learn whatever had my interest for the moment.

      At one time or another, I was a photojournalist (for 3 newspapers at the same time), a paramedic, a truck driver, a firefighter, a network manager, a taxi driver, a website designer, a pilot, a competive dancer, and a member of a multi-state search and rescue team. I sang in the church choir and at weddings, I was a girl scout and cub scout leader. I was running through life, all out..full bore.

      I drove a long-haul semi across country for a couple of years; I've been in all the continental US except Maine.

      I was an Paramedic. I could work 48 hour shifts, carry a patient, stretcher, and various equipment up two flights of stairs. While living in the Rockies, I was a member of a mountain search and rescue team. I would rock climb and repel off majestic cliffs. I could fly a plane. I could do CPR, start an IV, give meds and use a defibrillator. I could save a life.

      I was a firefighter. I could climb a 2 story ladder on a structure fire and vent the roof with a sawz-all. I could use an axe to break down doors and walls. I could carry a fully-charged 2 inch line into a burning building while wearing 60 lbs of gear. It was a rush, and I had the strength and the will to do it!

      During several natural disasters, including Hurricane Katrina, I spent days without sleep. Our team did search and rescue for people trapped in their homes, for bodies lost to floods, earthquakes, and landslides. I loved when we could save people, and cried when we didn't.

      Not too long ago, I was an artist. Some of my paintings have been on display at area banks, and my woodcarvings and photography have been on display at the US Embassy in Tanzania. I loved not only the physical part of creating but the thought process behind each work. I had a creative mind that could build something unique out scrap.

      I was 'out there'! Not just alive, but 'out there', a part of life, and I could feel it's energy.

      Then MS hit me. I had no strength, no stamina. Hell, somedays I could barely walk.

      Well, ok, I still have a brain...time to learn something new,time to start a new adventure. Use the 'lemons to make lemonaide'.

      I learned about computers and networks. I learned to build/repair computers. I could take small parts and fit them into cramped spaces, hook up a jumble of wires and make a computer come back to life. I understood binary code, and I liked it. I managed a network that provided Internet service to most of the state. I couldn't be in the world, but I was still connected to it, and I made sure everyone else was too.

      That adventure ended about a year ago when my brain turned to mush, when I can barely hug my beautiful husband, when my legs became jello and when my life energy drained away.

      Now, on a good day, I can shuffle out the back door and lift the garden hose to water the flowers.

      Now, on a good day, I can turn my computer on. I can sit for an hour and type on the keyboard and make it readable.

      Now, on a good day, I might be able to hold my camera steady enough to take a picture.

      Now, on a good day, I might be able to use a knife to cut up a vegetable.

      Now, on a good day, I can actually SEE art work and have the presence of mind to appreciate the creativeness and the gift the artist is sharing with us .

      Now, on a good day, I can get out of bed and usually remember to take my meds.

      Now, on a good day, I can give my husband the attention and the hugs he so richly deserves.

      Now, on a good day, when I can think, I remember the 'good old days'. The days of adventure when I could walk without falling, sit without pain, and think without a foggy brain.

      But most days, I'm just too tired.

      Most days, I feel like I need to be defibrilllated.

      I've had an interesting and exciting, adventurous life compared to many women I know. And it is selfish to complain about the pain and disability I have, when others have had it SO much worse and for a lot longer. And missed so many adventures.

      I try to remember a line from a song that goes...

      "If you could, do you think you would, trade it all, all the pain and suffering? Ah, but then you'd miss the beauty of the light upon this earth, and the sweetness of leaving?"

      I don't always remember that I love seeing the light upon this earth, and I don't always remember, that I have, at one time or another, created a little light for someone else.

      Not by only being an artist, or a firefighter, or a medic. But just by Being. By being me.

      But writing this has helped me remember.

      Thanks for listening to my rantings.
      I have worked with hospice for 28 plus years, if all people could achieve this feeling of understanding the human condition at any point of their cycle of life it would be a marvelous thing.

      That being said I am very sorry for all of your losses. I told my family I felt fortunate to be diagnosed at 56....I can only imagine the challenges of trying to raise a family while navigating this disease. God bless them, what courage!

      I honestly have no idea what is coming, but I hope I never forget all I have had.

      Peace.

      Comment


        #63
        My Story

        Hi
        I'm a late bloomer myself. I'm 65 approaching 66 in a few months. I wasn't diagnosed till 2012. I had many other health problems that mimicked MS symptoms. I had a fall in May of 2012 while at a family get together. I told everyone I tripped, but I didn't. I actually experienced what I now know is drop foot.

        After checking all my bones out and being embarrassed, all my friends and family looked at my left eye and became almost hysterical. They said my left eye pupil was so far left you could only see the white of my eye. At that point I still wasn't too concerned. I had had corrective muscle surgery in both my eyes when I was 10yo and the eye Dr. Told my parents that there was a slight possibility that when I became an adult it might have to be repeated. I thought this is what was going to happen.

        Over the years I always had problems focusing and saw double when I was tired, read too much, did too much computer work, ect, ect. I had noticed that the focusing and double vision was happening a lot more often but I just shrugged it off as another crappy age related symptom.

        As far as my difficulty walking....again I had had at least 17 foot surgeries. I don't think there was anything they hadn't operated for on my feet. I lived with pain...lots of pain. I went to a pain management physician. I also had a thyroidectomy due to tumors, so I always attributed my fatigue and temperature sensitivity to that even though most of the time my blood levels showed I was on the correct dosage of meds......plus Father Time was creeping.

        Well as a result of this last fall I went to my optometrist, which in turn sent me to a opthomologist which in turn sent me to a neuro-opthomologist ( did you even know there was one of these?). After an 8 hour battery of every eye test imaginable she said she'd like to have an MRI. I, of course, asked her why and she said something about ruling out optic nerve problems. I still wasn't too concerned and had the MRI done a few days later.

        Exactly 24 hours after the MRI the neuro-opthomologist called me on the phone (NOW I was getting concerned) and asked me if I had a preference of neurologists in my area. I said why would I need one of them. She then recommended a doctor very close to me put me on hold and came back on the line and said I had an appointment the next day. I kept asking her why and she said I'd see the doctor the next day and he'd explain.

        Now this stuff really ticks me off. It's MY body....I payed for the tests and I still can't be told over the phone. Anyway, when I got in to see the neuro he started out saying I'd have to have a blood test to r/o lymes but he was scheduling a sol medrol infusion and then Copaxone. I said "for what". He apologized up one side and down the other. He assumed the other doctor had given me the diagnosis. He said I had so many lesions ...too numerous too count and I most assured had MS and had probably had it for years.

        And then the journey began. My insurance denied the Copaxone, but my Dr. Fought for me and got it covered. Again when I became medicare eligible he again had to fight and again when the ACA kicked in this past January. But between the dr and Teva industries I'm covered.

        ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

        Comment


          #64
          Do you still want replies to AGING WITH MS? from 2009 to 2016?

          I will be 68 in a few months. I've had MS for 24 yrs. I also have secondary progress MS so I no longer take MS drugs. Just treat symptoms with pills. I did NOT have hardly any pain for the first twenty or so years! I always wondered why so many people with MS had pain when I had very little. Oh I had many issues and life ofcourse was different but I did NOT have pain like I do NOW! It hurts to walk. I hurt inside. My spasms are starting behind my left ear and goes down my left arm and so it actually hurts when I draw. (I sometimes consider myself an artist) and I've always been better at drawing than painting. But now it hurts to draw with my left hand especially in my arm, shoulder and left side of face. I paint with my right. But lately I've been staying inside alot and not painting at all. I've always recommended it for folks with ms because it helps the pain but now I don't even feel like walking over to my eisel. Ive gained weight and cant seem to lose. I really sound
          depressed, don't I? But I don't want any more drugs. They say getting old is not for
          sissys...well, try aging with MS too... pmst1

          Comment


            #65
            A Senior with PPMS

            Hi Seasha,

            I’m 68. I was diagnosed in December 2005 with RRMS. Diagnosis was changed to PPMS in 2007. I stopped working and went on Social Security Disability in 2011 at age 63 (when I turned 66 my status moved from disability to social security). I’m on Medicare and supplemental insurance.

            During the almost 11 years since my diagnosis, I’ve been blessed with slow progression. My visible symptoms involve a very weak left leg with the right one starting to lose function as well. My left hand is only marginally useful. I can no longer hold a fork to cut my food. I have a little tremor in my smile. My invisible symptoms include fatigue (both mind and body numbing fatigue), neuropathic pain in my lower back (since 2006), spasticity and intermittent numbness. Other things, such a bladder urgency, could be more age related than MS related. It’s hard to tell, isn’t it?

            The world treats me well, even though this is not the retirement I envisioned when I was 55 and running 35 miles a week. I get around the house using a walker while outside the house I use a Pride Scooter. I think I will discuss getting a power wheelchair at my Neurologist appointment in November. I am married to a wonderful woman who somehow doesn’t mind caring for her ever needier spouse. We spend a lot of quality time with our five grandchildren and our friends. I can still do some cooking (if I carefully plan ahead) which I enjoy.

            Life is pretty good for me. Some days I’m sad but those days are still relatively few. I hope I can continue to find “work-arounds” for MS in the coming years.

            Jim-T
            Jim DX RRMS Dec-2005, PPMS Jul-2007

            Comment


              #66
              Wow! I'm so glad this thread is still alive! It's been quite awhile since I posted last, but I reread all these posts today and see the significance of how important it is for us to stay connected. Some of you haven't posted for awhile and I'm wondering how you're all doing?

              Me - of course I'm on the decline with MS and aging. There's no getting around it. I sometimes look in the mirror and see my mother. Bless her - she's almost 95 and gets around better than I do! I visited her when my dad passed away last spring. She's in an assisted living facility and I felt right at home with all the wheelchairs and rollators.

              This sometimes sets my mind wondering how long before I need this kind of help. But usually I still focus on the here and now and what I can still do. And as Jim-T says, find work-arounds because they are there! It's surprising how much use I've found my rollator can do besides getting me to point B.

              My happy news is we gained three new babies this summer, but the sad part of SP and the aches and pains of aging is that I can no longer carry and walk around with them. Maybe I should devise a way to carry them safely in my walker

              I hope you all are doing as best as you can right now. Would love to hear from those who've been around and those who are new

              Take care, try to keep moving and doing what you still can!
              Seasha
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #67
                Still going after 26 years, 69 yrs old, ppms.

                Hi Seasha:

                My Ms began in the early 90's with left dropfoot, finally diagnosed after 4 years by LP in 1995. I am a 69 year old Male. When diagnosed, I started going to the gym 3 x per week, about 45 minutes. I firmly believing that has been my saving grace. Sure, I have MS but I have my positive attitude both mentally and physically. I have MS but MS doesn't have me. I've gone thru canes, scooters, and now motorized wheelchair.

                I have always said that as soon as I purchased my first motorized wheelchair I stopped being handicapped. Sure , I needed to make additional accomodations, but I have the ability to move without tiring, except my butt. That is always an issue.






                Originally posted by Seasha View Post
                Hi fellow seniors! F
                Just wanted to talk with others who are older and have MS and our unique situation of aging w/ MS. I have SP and wonder how many others have this progression process going on - or not.

                My doctor said something to me last visit about me having a "leg up" on aging. While others my age are dealing with new aches & pains, bladder problems, body falling apart and all the other issues, she said I've already experienced this. Kind of like "felt this, done that"!! It made me laugh

                Have a lot of you had MS for years? Are you retired now? On disability? On Medicare? How is the world treating you? Have you lost or gained in any way? Feeling empowered or given up? Gracefully aging

                Would love to hear from you. Think we all can relate as we old timers still have a voice and have wisdom to pass on!!!

                Stay well and stong!
                Seasha

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