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Hard day. When I say I ignore it, I am just hoping it goes away. MS is a serious messed up disease. I don't poke or prod, just quietly take it and try to curse it away. I wonder if you all also have done like me...When I was first diagnosed it was very difficult for me emotionally and out of sheer fear - that I couldn't comfortably be around or engaged with anyone who had MS and especially if they were clearly disabled, that was my biggest fear. Please don't take this the wrong way, I just… read more
Answer Summary
Members responded with deep honesty and compassion to a post about fearing MS progression and once avoiding others with the disease, with many... Read more
Well said do not give in. I live in Ireland and just returned from wonderful St Petersburg Florida. I walked my God Daughter down the aisle at her Beautiful Wedding, without my walking Stick I might add. I’m home in Ireland after six days away, a tough Journey with Two flights and long wait overs in Tampa and Newark.
Two long bus Journeys and no sleep or rest for almost 24 hours. I did it and am now feeling real tired, my legs won’t do what they did yesterday, my mind and Body seem to be fighting each other. This is the First time I I feel I have those MS Symptoms. I was diagnosed 3/4 years ago just completed a Strong Course of Mavenclad. I’m 75 years of Age. I thought I was tough and able to deal with My MS diagnosis.
Just to mention Both My Parents Mother and Father sadly passed ,2 Brothers and 1 Sister All had or have MS. Now Me. Six from One Irish Family. I’m told this is Unheard off, Anyone out there with numbers alike. I guess I pushed too far with this Trip, I’m hopeful to visit Australia in September to visit my 2 sons and My wonderful Grand Daughters. So I am determined to not give up and fight on.
I was a Professional Golf Caddie for the Second Part of My Career. Walking 5/6 miles per Day most Weeks. Now it’s a Struggle at times to Walk 500 Yds. I just want to tell my Story and to help other Folks in a Simla situation. Don’t Give up and Dream Big.
Hope I can keep in Touch with you all from Australia in September.
God Bless you all and Stay Safe in this unpredictable World we all live In.
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Okay @A MyMSTeam Member, my friend! We need to step out of this rabbit hole that we are in!
Yes, this condition forking sucks! It came out of nowhere when we are in the prime of our lives and it takes our capabilities away like a crow on a carcass, little nibbles at a time. First, a foot drop here and there, a few years later and you’re tripping and falling all over, then you’re using a cane, then a Rollator, then finally a wheelchair.
But the progression of this condition is Nucking Futs! Who knows what’s in store for each of us? Everyone of us has a different path. As someone who was once an incredible gymnast, I am sure you feel the loss more powerfully than some of us, but your path forward is YOUR path and is going to be different than my path and every other path.
Stay strong and keep fighting. Jim Valvano said it best. Don’t give up! Don’t ever give up!
Writing may be on the wall but fortunately I don’t speak that language.
@A MyMSTeam Member, Shannon, I cried when I read your words. I was the same, did not want to meet anyone with MS, internally screamed at the thought of disability. I avoided anything to do with the subject of MS, instead busying myself with helping others as this was something I was more comfortable with.. It’s ironic as I had spent my life immersed in disability - family members, career - yet I felt that any acceptance of my situation was weakness and to be honest abhorrent.
thirty years after diagnosis and slowly, slowly I have learned, am still learning, to accept. I now know that I am still me, I can say to others that I have MS. I have learned through this MS family that acceptance is not weak and that we are warriors together.
Shannon, thank you for putting into words what I couldn’t say. The writing may be on the wall, but we can edit that text - let’s write what WE want on the wall 💜
Ok ...... I went to two MS meetings when I was first diagnosed 30 years ago. My mother encouraged me to go back to the second meeting. After that I said I was never going back because I did not want to end up like those people. We all fear what we cannot see. But work with what you have. Don't give up. MS is not all doom and gloom. It has taugh me so many things about my body, and my mind. Compartmentalising is very helpful ... put MS aside and and what else is doable? Neuroplasticity ... you can retrain your brain ... learn different ways to do things... yeah it takes effort but doesn't everything? Life is a choice ... CHOOSE LIFE! DON'T LET FEAR BE YOUR LIFE!
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