Announcement

Collapse
No announcement yet.

Calling all Seniors - aging and MS

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Calling all Seniors - aging and MS

    Hi fellow seniors!

    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
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    #2
    Originally dx'd probable. Now un-dx'd
    It's hard when you don't have a firm dx. So I am just hanging in there.
    I have decided if I should have another attack or obvious flare I am not going to take any of the DMDs. Maybe steroids. But I will worry about that when it happens. Been 11 years since my last relapse.
    techie
    Another pirated saying:
    Half of life is if.
    When today is bad, tomorrow is generally a better day.
    Dogs Rule!

    Comment


      #3
      Hi Seasha,

      Probably a good idea to gather the thoughts all together every once in a while, so here are mine.

      Seeing the word "empowered" in a thread about MS made me smile. But your use of it shows a coming to terms, so to speak, with this affliction. Me too. I'm more confident now than @ first dx (early '08).

      At 61 (62 in spring) AARP says I'm a senior, I understand what doc meant about the "leg up" comment! But have been fortunate. Although I a dx of RRMS, I have no real relapse or remission. So I'm either blessed or going slowly down hill (SP or PP MS?)

      I had / have foot drop, etc. problems for maybe 10 years previous. The pain, tingle, balance etc.... No ON (crossing fingers!). But these things are an acceptable loss considering others.

      I've gained an understanding of humility and try to practice it. Not easy. I've become a better person in a lot of little ways, or like to think so. Still an introvert but ya never know!

      I'm alone. I'm not on disability and hope to reach Medicare without needing it. Still working ( b a r e l y ) in this economy, self-employed. Fortunate to be able to live as I am at this point in time and space.

      Gracefully aging? Clumsily may be a better description, but I'm still growing and like they say... "If you're not growing, you're dying"

      Look forward to others responses to your thread, thanks Seasha!

      Jer

      Comment


        #4
        I'm 54 and use a wheelchair practically full time now. I'm a former dancer, so this has been a tough adjustment for me. I've also been diagnosed for 32 years, so none of this is a surprise, although it doth sucketh.
        “The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
        Diagnosed 1979

        Comment


          #5
          I'm 60 now and have had MS since age 24. I still work full-time in a job that is primarily sedentary, so the foot drop, ON, fatigue and bladder issues are not readily apparent and don't really "disable" me.

          I am not sure if my own RRMS is significantly different from the effects of normal aging. Maybe that is some consolation?

          Comment


            #6
            Yea Jazzgirl. I have a new word-sucketh. LOL

            Getting older can be a bummer. Yesterday when I was at the orthopaedist office, I looked around the enormous waiting room. It was filled with---older people. Why am I suddenly noticing that? I guess because I am now one of those older people. I don't think of myself as older-I am 62. In a room with folks in their 70's and 80's with knee replacements, 62 is pretty young-maybe.

            At least my PCP has quit saying to me_"You have reached that age..." I told him I was only 3 months older than him and I would kick him in the knee if he ever told me that again.

            So regarding my aging, I think that I feel more empowered to say what I think. Not that I blab whatever all over the place but I feel ok about just saying what is on my mind. I have lived a long time. I have earned the right.

            I think I have gained as I grow older. I volunteer at the local hospital and have met a lot of really nice folks. Many of them are older than me. I like talking with them and seeing their continued zest for life. I volunteer in physical therapy so the folks I see have had surgery or other health issues and the older ones always have a smile and a joke and love living. They are good role models for me. In their eyes, I am a youngster. What a compliment!!!

            My recent foot surgery has also been good for me. It has helped me realize how lucky I am. I have a husband who is a total dork about cooking and housekeeping but has taken care of me in his own fashion and we have survived. It's made me think of the blessings in my life and how I am able to get around and do things. It's made me sit down and do some serious thinking.

            So I guess I am still "growing" too. And yes, it is better than all the other options!

            lydialou

            Comment


              #7
              Originally posted by lydialou View Post
              So regarding my aging, I think that I feel more empowered to say what I think. Not that I blab whatever all over the place but I feel ok about just saying what is on my mind. I have lived a long time. I have earned the right. lydialou
              This is what I mean!! This, and what Jer said about "coming to terms" - by living with MS and aging!

              Little did I know what my retirement years would bring! I was forced into early retirement at the age of 60 due to MS - (I am now 62 & on SSDI and Medicare.) I had always thought I'd still be very active and be able to enrich my life by traveling, continued hiking, becoming a Master Gardener and all that entails, among other things.

              I now have had to re-evaluate everything and am slowly adapting and redefining the "newer, but older" me. Yes, age has something to do with this. But MS has dropped me to my "humble" knees. Both of these have helped me become a better, more compassionate person. When I see someone older with problems, I understand what it feels like. Then again, when I see someone older who is the picture of health, I admit that I feel pangs of envy.

              I still garden in a modified way and grocery shopping is considered an exercise and I try to stay positive, but never in a million years could I have envisioned life as it is now. Just shows that NO ONE has the power of a crystal ball!!

              Still in all, I wouldn't change a thing. Maybe sounds a littler strange, but we are the whole of our experiences and I like the whole package here. Older and challenged, but more wiser and adaptable! And loving this crazy life
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                I 've had MS for 16 or so yrs. Rx at 40. (10 yrs of RRMS then the rest SPMS.And have been paralyzed in a wheelchair for six yrs. That...has gone from just my legs to paralysis from my chest down with lots of spasticity and now I am losing the use of my hands and arms.
                Six weeks ago...my face became paralyzed on the right side as tho a line was drawn top to bottom...straight down the middle. I talk funny. drool some, choke some...only one eye blinks...blah...blah...blah. MS and now Bell's Palsy! At 56, on SSDI and medicare my docs basically keep me comfortable. I'm on a couple forums...I do alot of research...somewhat of an "Information Broker"...without my computer I'd go nuts!

                Everytime my MS gets worse...I get scared, I get angry, I cry, and can become a "wicked b_tch" and then I talk it thru with my husband and attempt "re-entry" to a more sane world to work on my coping skills. lol! (obviously venting is working for me, too!) Life goes on and on!

                I had planned for a whole different life...but, the one I've had has been such a "learning experience!" Mostly in a good way. Aging woes along with MS has definately put my life in perspective.

                And lastly...like lydialou, I definately say exactly what I think!!!!! lol!!!!!!!!!
                Lord, keep your arm around my shoulder and your hand over my mouth. Unknown

                Comment


                  #9
                  Aging gracefully?

                  Well, maybe so, maybe not. I'm 61, not diagnosed 'til age 57, but symptomatic back to at least 30, maybe earlier.

                  Planned on retiring at 63, but gave in and left quietly this June, with encouragement to "choose quality of life over a full pension." I am relieved each morning at being able to rise when I want, and have quiet days and naps at will. Fatigue won. Those last two years are a significant loss on the pension.

                  They still call me RRMS. I have no stamina. Pain in ribs if I'm up and about for more than ten minutes. Resting for fifteen to twenty minutes gives me another five minutes to be up and about. I don't think much of this as "quality."I use a cane for confidence if I'm walking alone, otherwise my husband's hand is my best support. I am blessed to have him in my life. We are forty one years together.

                  He is patient and supportive and helps with hard to reach injections. Others are not as in tune with where I am. Some wish I would "get better". Some say I act older than I ought to. But they have said that for years.

                  I have "more than a hundred but less than a thousand" lesions on the brain, and many on the spine. But at diagnosis I had no symptoms, and the neurologist called it "benign" MS. Fatigue and pain and imbalance are "all" I deal with. Oh, and depression.

                  Thinking of a change from Copaxone to something else. Beginning Lyrica for pain tomorrow. Doing the best I can.
                  First symptoms: 1970s Dx 6/07 Copaxone 7/07 DMD Free 10/11
                  Ignorance was bliss ... I regret knowing.

                  Comment


                    #10
                    Hi Seasha, I'm 66 & been dx for 11yrs. I'm on Rebif.
                    I use a Rollator around the house & a wheelchair when I go out. As I live in the South, that is not too often w/ the Summer as my worst enemy is HEAT!! We had our 1st.cooler day 70,I'm just living for Winter.
                    I'm really kinda boreing as I've been on the same med.from the start & I've had the same Dr. I'm a widow & live w/ my Daughter & family.I'm blessed as I have my own wing in there house, my dear S-I-L built for me.
                    I read,watch T.V., & bird watch ( I won an award for my bird counts) I depend on my 'puter & phone to keep me intouch.
                    I have a total of 8 G'kids & they are such a blessing.
                    I have all the "old people" symptoms,the worst is my knees. After seeing several top Othoro.Dr's it's been decided due to my MS I'm not a good canadate for knee replacement. So I live w/ awful ugly black braces on both knees & legs. After talking w/all of my Dr's I decided not to take any of the pain Rx's so all I use is Tylenol & Lots of ICE.

                    Am I sad at aging? not really,I am content,have come to terms w/ my MS & content w/ my life. I can't lie,I do miss not being able to drive, walk well & come & go at will. Friends are happy to come to me,my 2 Sons come to me.
                    As I'm not allowed to fly( long story,due to MS) my kids & even there spouses,are willing to pick me up & drive me to visit & spend several weeks w/ them, eventho they live in different states than I do.
                    I don't know how many yrs. I have left,only Our Lord does,
                    but I'm happy & do what ever i can to make it happen.
                    I would like to hear how every one copes.
                    God Bless Nona Judy

                    Comment


                      #11
                      Let's eat desset!

                      Hey all - it's great to hear your stories! I just got an email from an old friend that I wanted to share:

                      ***As I've aged, I've become kinder to myself, and less critical of myself. I've become my own friend..

                      I have seen too many dear friends leave this world too soon; before they understood the great freedom that comes with aging.

                      Whose business is it if I choose to read or play on the computer until 4 AM or sleep until noon? I will dance with myself to those wonderful tunes of the 60 &70's, and if I, at the same time, wish to weep over a lost love .. I will.
                      I will walk the beach in a swim suit that is stretched over a bulging body, and will dive into the waves with abandon if I choose to, despite the pitying glances from the jet set.

                      They, too, will get old.
                      I know I am sometimes forgetful. But there again, some of life is just as well forgotten. And I eventually remember the important things.

                      Sure, over the years my heart has been broken. How can your heart not break when you lose a loved one, or when a child suffers, or even when somebody's beloved pet gets hit by a car? But broken hearts are what give us strength and understanding and compassion. A heart never broken is pristine and sterile and will never know the joy of being imperfect..

                      I am so blessed to have lived long enough to have my hair turning gray, and to have my youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have died before their hair could turn silver.

                      As you get older, it is easier to be positive. You care less about what other people think. I don't question myself anymore.. I've even earned the right to be wrong.

                      So, to answer your question, I like being old. It has set me free. I like the person I have become. I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day(if I feel like it).
                      1st sx '89 Dx '99 w/RRMS - SP since 2010
                      Administrator Message Boards/Moderator

                      Comment


                        #12
                        Seasha...

                        some great responses to your thread...!

                        I've revisited simply hoping others would chime in! And rereading the submissions gives me a sense of community somehow, regardless of my MS and my life being different.

                        On age someone said that fruit taste most delicious just when it's season is ending. Love that. And I feel that way.

                        I don't always say what I think. Except here or with old friends.

                        Unless words are very well chosen, at proper time and place, they often end in more or less fortunate misunderstandings.... or just dismissed.

                        And I hate being dismissed. Those who are younger (quicker to anger) can become indignant if they think someone is being unfair to them. So, I'm working @ better communication at age 60 than age 30. Who knew! Still growing, eh?

                        Plus most friends are at the very least 10 years younger so it pays to listen before opening mouth.

                        If you're around "senior years" and out there reading this, come and add your thoughts to Seasha's thread.

                        Jer

                        Comment


                          #13
                          Seasha

                          I've read and by-passed this thread a few times because I don't want to bring down the mood of most posting here....but here goes I have been diagnosed for 21 years and believe it was around 14 years prior. Secondary progressive for many years. The past six years I've used a powerchair full time, unable to take one lousy step. If I hang on for dear life, my feet will inch backward enough to toilet and get back in my chair.

                          A big part of my MS journey has involved pain....all over. It was thought to be fibromyalgia, but as time has passed, I believe it's good old MS pain as it seems to be at every nerve ending. No medication helps so I just take my two Aleve everyday to kind of take the edge off. Anyone else? Don't think it was mentioned by anyone here.

                          Another huge problem is my bladder issues. It's pretty hard going anywhere when there's no control. By the time I realize it's "potty time", it's too late. So, I'm house-bound except for doctor appointments. It's really difficult wrestling my stiff, spastic legs into a car and most people really don't want to bother. I have three adult "kids" and the one who helps the most (transportation) is my son and DIL. Two daughters -- one about an hour away, the other across the country, no help from either. Barely a phone call except when they need something.

                          From the immobility, I'm dealing with my second episode of cellulitis in my calves. This is really yucky with drainage, etc. My legs are so heavy it's almost impossible to lift them to put on pants. Yes, I sit and cry alot from the frustration. Living alone, divorced after 24 years and the same year diagnosed, the joy of living has gone out of my life. Six gkids but am unable to see them often. One ggkid on the way.

                          My birthday is next week, #68, and I wonder how much longer this torture will continue? With no hope in sight, I'm ready to meet the Lord now. See.....I told you this would be depressing. Sorry, but we're not all so accepting and pleased with our lot in life. "Golden years"???? Bah, humbug.

                          Comment


                            #14
                            Ah, foggyrose~~

                            Contrary to what you say about bring down the mood of this thread, I'm glad you checked in and spoke from the heart. Your honest and raw statements are what so many of us feel at times!!! It's hard enough going through the aging process and top that with progressive MS, it's a double whammy.

                            So many of us tend to downplay our harder experiences of living with MS (and aging). So many folks, family included, don't want to hear of the pain we go through - emotionally and physically - and we in turn don't share these issues as it is viewed as a burden. Well, I don't anyway and that's why I come here. I too have overall pain many of my days, so you are not alone in that!!

                            I am glad you do have some kids who care to check in with you. I also have a child nearby who only calls when something is needed!! My other two live far away. So, what to do? Can you get some outside help with you everyday needs? You could search the NMSS online or call them and see if there are helpers in your area. I've heard of some who come to your home merely for companionship.

                            Just remember that you have friends here and please check in again. With so many of my friends "giving up" on me (is it fear or not being able to do what we used to do together?) I find that folks here who I'll never met in person touch me in ways that are irreplaceable.

                            Happy Birthday greetings to you, my MS friend. You DO have so much to offer in this lifetime by way of experiences, humility and wisdom, so never, never forget that!!

                            Be well and try to stay lifted
                            Seasha
                            1st sx '89 Dx '99 w/RRMS - SP since 2010
                            Administrator Message Boards/Moderator

                            Comment


                              #15
                              Dear foggyrose,

                              Thanks for giving a frank assessment of your life with MS in the senior years. My road isn't as hard right now. There is pain, but it comes and goes. Mobility is poor but not close to the issues you are facing. So it is easier today... tomorrow who knows?

                              Seasha speaks of her golden years on "not lamenting what could have been, or worrying about what will be." She is right. Even when there is no music in our life we have to continue to listen.

                              I have allowed my "blues" to drown out everything else at times, so much so, that I couldn't hear answers to my own prayers. There is ALWAYS something or someone upon which the day brightens.

                              It took 60+ years to realize that most often it was not the things I thought it would be when I was young.

                              Thanks very much for your sincere post. And have a good Birthday!

                              Jer

                              Comment

                              Working...
                              X