My MS Journey: Hello fellow sojourner in... - My MSAA Community

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My MS Journey

ReformedRosie16 profile image
10 Replies

Hello fellow sojourner in life with Multiple Sclerosis. I am a 58 year old woman who was diagnosed with MS in 2007. I know that I had this disease for at least 20 years before my diagnosis. Because it took so long for a correct diagnosis, my MRI shows much damage to my brain and CNS (central nervous system.). As a result, I have been in a steady progression of disability and physical pain. I am still walking - but just barely and for very short distances. I continue to work once a week with a physical trainer who urges me to continue walking daily, at least as much that I am able. She also creates programs that target muscle groups that are displaying weakness and fatigue. I faithfully workout with her programs daily, even when I have to force myself to do so. I am always surprised to find that I usually feel much better after excercising. But it is often hard to persevere through the pain. I wonder if there are others of you who have discovered the same?

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ReformedRosie16 profile image
ReformedRosie16
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10 Replies
jimeka profile image
jimeka

Hi Rosie, I am 60, and like you there has been a steady decline over the years. I have just given up my part time job as it was becoming harder to write, use the computer etc. Walking is becoming more challenging, and frustrating as I used to walk miles, and have walked many mountains in Europe. I used to love walking my dog, but now have to watch someone else do it for me. MS is a cruel disorder. We have to make the most of a not so good situation. My body today feels as though it has been ran over by a bus, I put it down to a change in the weather, yesterday was warmer and not very windy, and I felt OK. I walk better with my walker, but I still drag my right foot, and trip up a lot. I have taken up crafts, I find it is a challenge to the brain. Try and find something interesting to do it will help, I find if I keep the brain occupied, it lessons the impact of the ms. Keep your chin up, cheers Jimeka

MrBigCat profile image
MrBigCat in reply to jimeka

Hi Rosie and Jimeka, I'm 60 too and was diagnosed 3 years ago. Initially I was diagnosed with a bad back cause my back was so stiff but of course that was just symptom of the MS. Now I have difficulty walking and these days I'm scared to leave the house for fear of falling or getting so fatigued. I used to love to walk and hike, miss it so much but I do walk up and down the hall in my house.

ReformedRosie16 profile image
ReformedRosie16 in reply to MrBigCat

I like your photo. I too have a big cat but she is female. She is my constant companion as I move from room to room in my home. I did go through a driving course and got hand-controls so that I could still drive my car, but my husband asked me to stop driving because he was afraid of me falling as well. I am now confined to walking in my home or on my gravel driveway (which is quite a challenge with a rollator!). I likewise experience the fatigue whenever I have a "good" day and attempt to do too much because they are so seldom. Hang in there. My MS doctor's office tells me there is a new drug down the pike which is supposed to repair myelin damage that is supossed to come available around the end of this year. Maybe we'll get some of our walking back with it....

MrBigCat profile image
MrBigCat in reply to ReformedRosie16

Thank you for your kind words and sharing your experiences with me and this community. It helps me gather my strength to work with these difficulties.

ReformedRosie16 profile image
ReformedRosie16 in reply to jimeka

Thank you. Like you, I was and avid walker, and I loved to ride my bicycle for hours. I am taking on-line courses to continue learning and challenge myself. Thank you for your encouragement.

ReformedRosie16 profile image
ReformedRosie16 in reply to jimeka

Thank you for your reply. I do agree with you about MS being a cruel disease. Yesterday I had a great morning at church, feeling like I could tackle anything. But by the end of the day, I had trouble even standing for a few minutes. The only thing I can count on is the unpredictability of this disease. One thing that I do is take courses online. I love to continue learning and since I cannot do many of the things that I used to do (running, bike riding, hiking, and playing the piano to name a few) I am able to still study. I am a Christian and I take online courses on theology and growing in my faith. I truly enjoy the time I am able to contiue learning and study.

Grandma-Rita profile image
Grandma-Rita

I was 54 when I was diagnosed with MS - I also have trouble with walking, Two years ago I joined a gym and got a personal trainer. It's an expense but I continue with it, it a push I need to keep me going. There are many days I would rather stay home but I go. I need to do more walking on my own but it is difficult hopefully joining this site will give me a push. I use to race walk and I know those days are past. I have two granddaughters that mean the world to me. I am now 67.

ReformedRosie16 profile image
ReformedRosie16 in reply to Grandma-Rita

Good for you! I agree that sometimes it is difficult to get motivated to exercise. But, the benefits always outweigh the cost. i always feel so much better after I complete a program that my athletic trainer creates for me. I agree it is an expense - but I know I would not be walking today if it was not for my trainer pushing me. I have no grandchildren yet - just a grand-puppy. (My daughter's "child" for now.). i hope that I am as active as you whenever I turn 67!

karenmbloom profile image
karenmbloom

I am 56, dx at 48 and told I had lesions 10-12 yrs old. I fought like hell but lost use of my legs w/in a year. Sight returned and I'm considered stable (spms) since nothing more since loss of my legs. I worked 5 years as a paraplegic and finally gave in and am on disability now for three years. I never dreamed I could consider myself having a full life being a full time wheeler - but I do. Had to learn how to deal w/learning to drive w/my hands after getting special vehicle and was fortunate to have means to build a house custom for wheelchair living. MS is a monster. I lost my legs but refuse to lose my faith. My 84 yrs old father lives w/me, I'm divorced 20+ yrs, and my son lives a mile away w/his wife. They are making me a grandmother next month.

ReformedRosie16 profile image
ReformedRosie16 in reply to karenmbloom

I agree with you, Karen, that keeping your faith is crucial for living with this disease. Since I can no longer work, drive, or exercise, i have been taking theology courses online to grow in my faith. I am able to handle the frustration of falling so much, of the pain and disability of MS knowing that God is sovereign and still in control of my life - since I am no longer. I hope that you also find joy in becoming a grandmother soon. God bless you.

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