Today I would like to let you in on a couple of resources I have found helpful in my journey with MS. The first is a website hosted by Dave Bexfield. He is also a boomer with MS, he has a website, a blog and a newsletter. The second is a website,/magazine put out by the American Academy of Neurology. This website , (which I think I’ve recommended before), covers all diseases of the brain and spinal cord. This time I am recommending a special fall 2020 issue they have dedicated to Multiple Sclerosis. They also have their usual Oct/Nov issue covering other illnesses which happens to have Peter Frampton on the cover with his struggles dealing with “inclusion body myositis.”
https://www.activemsers.org/ is the website put out by Dave Bexfield. This is a very helpful resource. We can follow his adventures, with his wife, in traveling, exercising, and pretty much whatever he is up to. He has a wonderful sense of humor and no subject regarding living with MS is off the table. You may cringe, laugh and totally relate to his posts. He is very positive without portraying himself as “an inspiration,” yet he is. I don’t know how else to put it, (read next recommendation). He has all the newest updates on medications and research. He offers discounts on some MS related equipment. I ordered a cooling vest with the discount I received from being a member of ActiveMSusers. I look forward to his newsletters. I really cannot say enough good things about him.
http://BrainandLife.org is the next website, specifically http://www.BrainandLife.org/MultipleScerosis for this issue. It is very informative with articles on why vaccines are important; the different types of MS, “Multiple Sclerosis 101.” They also interview a woman with Primary Progressive MS. I know these publications don’t want to publish negative profiles, I do understand that, but by continually focusing on success stories, it makes me feel less than.
I have conquered a lot, some friends call me their “hero” for pushing through obstacles, and there is so much positive to my story, see Gardening Background, but I also can’t ignore the negative because there is plenty of it and sometimes its overwhelming. I can’t be the only one feeling this way. I remember an ad once that came out on a new medication; they showed a female that went from a wheelchair to walking. I’d like to know the statistics. I was on the medication and it didn’t happen for me.
I wanted this to be a website/blog that cover real time challenges. Sometimes I feel bad, really bad. I haven’t written this week because I was not liking myself. When I am unable to do something, right away I hate myself. This week it was not being able to run to the store on my own and having to wait in the car while my husband runs in and handles whatever needed to get done. It is frustrating. The fact that it had been raining since Friday and I haven’t been out of the house did factor in.
Today is a beautiful cool day and I wanted to work in the garden but my knee is swollen and hurts, so here I am, regardless of the fact that no one has found my blog and that is a bit disappointing, but It is also my online diary and helps me immensely!