Tagged: Newly Diagnosed Advice Thoughts
August 9, 2019 at 4:42 pm #18050
Wrote this column this week – it was a reply to member Jono who asked the question in the ‘Living With MS’ section about a month ago.
Please add any thoughts/advice that you think would help. There are patients joining all the time and when they are newly diagnosed advice would no doubt be welcomed.
The format I chose is what I know now I wished I’d known then….
August 12, 2019 at 5:14 pm #18054
These are good tips John. As a second generation MSer, I watched my dad do battle in a time before drugs. He could still (kind of) walk when he passed away at 75 from cancer. He was an inspiration to many. From my parents I learned the importance of staying positive, staying active and eating a relatively healthy diet. I believe these are the foundations to success. And don’t smoke. I have been fortunate to have been successful with this approach since my diagnosis 28 years ago.
As the child of a parent with MS, I would add don’t worry about the little things. Your kids will still learn to catch a ball, even if you can’t teach them, and they will grow up with an understanding and compassion that will far exceed that of their peers.
August 12, 2019 at 5:16 pm #18055
When I was first diagnosed I felt relief at first because I knew what I was up against. It took longer than 2 years to diagnose me with Primary Progressive MS. I listened intently to my doctors’ advice for treatment options. (This is in 2007). Back then there was no DMT’s (disease modifying drugs)for PPMS. But now there are quite a few. Your choices are many now.
What would I do differently if I were diagnosed now?
Become or stay active: swim, yoga, walking etc., depending on your ability level. Keep a structured diary so you can get an idea of what is changing as time goes on.
Think outside the box: I changed my diet 5 years ago and it’s made a huge difference in my progression keeping it stable. I wished I had done that sooner. Now I eat Paleo/autoimmune diet. Attitude also plays a major role with MS. It’s easy to feel sorry for yourself but I learned as time went on that I was my own best advocate. Surround yourself with positive people. I am blessed with a close family and friends to lean on when I need help. Don’t let pride keep you from asking for the help you need.
Listen to your body. As John says everyone with MS is different.
August 13, 2019 at 7:41 pm #18076
August 13, 2019 at 7:43 pm #18077
August 13, 2019 at 7:44 pm #18078
August 13, 2019 at 7:47 pm #18079
August 14, 2019 at 8:13 pm #18084
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