Managing MS
This is a bit of a departure for me. Managing MS: Straight Talk From a Thirty-One Year Survivor
isn't the kind of book I'd typically pick up. So why did I? Well my
Aunt Debbie wrote it. Which also means that any review I give will be
incredibly biased. I want this book to sell lots because I want my aunt
to be successful. She's been wanting to write a book for many years and
with new internet-based publishing, that dream was finally realized.
My aunt is a pretty amazing person. Reading her book was incredibly eye-opening for me. She's been in a wheel chair for as long as I can remember, though when I was younger she was able to walk short distances with the aid of a walker. She can still stand enough to transfer from her wheelchair to the toilet, or to unload the dishwasher, but this has more to do with locking her legs, than utilizing the muscles in them. Whenever she leaves her home, she's in a scooter.
The scooter never felt like a huge hindrance, to me anyway. It was just a part of going somewhere with Aunt Debbie. It took a bit longer to get in and out of the car, and finding a handicapped accessible entrance could get frustrating. But as a kid, I mostly saw the positives. These involved me being allowed to sit on my aunt's lap and steer, or putting something in her basket so I wouldn't have to carry it. Kids are pretty selfish.
My aunt's attitude also played a huge part in this. She was always cheerful. She never grumbled when she needed to be carried or when it was difficult for her to get somewhere. She's the kind of person who looks for a solution instead of focusing on the problem, and she was always able to find one. She was also never shy about insisting that she needed to lie down for an hour or find an ice pack or take some time away from the family. She was always aware of what she needed to stay not only healthy but pleasant.
Of course, I only saw her rarely when I was growing up. She lived in Pittsburgh and I lived in Denver and we visited once every year or two. These visits were filled with food, movies, board games, and outings. They had none of the dreariness of everyday life that can get you down.
After reading her book, I'm even more amazed at how she manages to stay so upbeat. I knew that her legs didn't work. This was always the symptom I was the most aware of, because it was the easiest one to see. But her book outlines a slew of symptoms I'd never even considered. She talks about issues with her bladder, bowel movements, and even sexual function. She deals with near-constant pain and tingling. She has to deal with both depression and anxiety as physical effects of nerve damage in her brain and emotional effects of dealing with all the other symptoms. Heat, humidity, stress, and other outside factors can lead to a worsening of one or all of these symptoms which triggers a spiral that can lead to long-term damage.
None of this was apparent to me as a child, and I think a lot of that is due to my aunt's almost aggressive cheerfulness. She's never shy about telling you that she's in a bad mood, but she manages to not take it out on anyone. Instead she would go somewhere else until she felt ready to socialize again. Her suicide attempt a few years ago shocked our entire family. I am grateful that she included a chapter about it in her book.
I think Managing MS is a great book because it contains a ton of information about what someone with MS deals with every day. The symptoms and their interactions are overwhelming. The drug cocktail my aunt manages is impressive. The awareness she has of her body and how any little thing can trigger a flare up of symptoms just floors me. The fact that she has stayed so optimistic after living with MS for over three decades is simply amazing. I have no idea how she does it; I don't think I could.
In the book, my Aunt Debbie claims that she isn't a superhero. She's just a normal woman doing everything she can to maintain her quality of living. But after reading her story, I'm more convinced than ever that she is Super Woman.
If you're interested in learning more about MS, you should definitely check out my aunt's website at debbiems.com. You can also buy her book from Amazon. It's short, but it has pointers to lots of additional resources.
My aunt is a pretty amazing person. Reading her book was incredibly eye-opening for me. She's been in a wheel chair for as long as I can remember, though when I was younger she was able to walk short distances with the aid of a walker. She can still stand enough to transfer from her wheelchair to the toilet, or to unload the dishwasher, but this has more to do with locking her legs, than utilizing the muscles in them. Whenever she leaves her home, she's in a scooter.
The scooter never felt like a huge hindrance, to me anyway. It was just a part of going somewhere with Aunt Debbie. It took a bit longer to get in and out of the car, and finding a handicapped accessible entrance could get frustrating. But as a kid, I mostly saw the positives. These involved me being allowed to sit on my aunt's lap and steer, or putting something in her basket so I wouldn't have to carry it. Kids are pretty selfish.
My aunt's attitude also played a huge part in this. She was always cheerful. She never grumbled when she needed to be carried or when it was difficult for her to get somewhere. She's the kind of person who looks for a solution instead of focusing on the problem, and she was always able to find one. She was also never shy about insisting that she needed to lie down for an hour or find an ice pack or take some time away from the family. She was always aware of what she needed to stay not only healthy but pleasant.
Of course, I only saw her rarely when I was growing up. She lived in Pittsburgh and I lived in Denver and we visited once every year or two. These visits were filled with food, movies, board games, and outings. They had none of the dreariness of everyday life that can get you down.
After reading her book, I'm even more amazed at how she manages to stay so upbeat. I knew that her legs didn't work. This was always the symptom I was the most aware of, because it was the easiest one to see. But her book outlines a slew of symptoms I'd never even considered. She talks about issues with her bladder, bowel movements, and even sexual function. She deals with near-constant pain and tingling. She has to deal with both depression and anxiety as physical effects of nerve damage in her brain and emotional effects of dealing with all the other symptoms. Heat, humidity, stress, and other outside factors can lead to a worsening of one or all of these symptoms which triggers a spiral that can lead to long-term damage.
None of this was apparent to me as a child, and I think a lot of that is due to my aunt's almost aggressive cheerfulness. She's never shy about telling you that she's in a bad mood, but she manages to not take it out on anyone. Instead she would go somewhere else until she felt ready to socialize again. Her suicide attempt a few years ago shocked our entire family. I am grateful that she included a chapter about it in her book.
I think Managing MS is a great book because it contains a ton of information about what someone with MS deals with every day. The symptoms and their interactions are overwhelming. The drug cocktail my aunt manages is impressive. The awareness she has of her body and how any little thing can trigger a flare up of symptoms just floors me. The fact that she has stayed so optimistic after living with MS for over three decades is simply amazing. I have no idea how she does it; I don't think I could.
In the book, my Aunt Debbie claims that she isn't a superhero. She's just a normal woman doing everything she can to maintain her quality of living. But after reading her story, I'm more convinced than ever that she is Super Woman.
If you're interested in learning more about MS, you should definitely check out my aunt's website at debbiems.com. You can also buy her book from Amazon. It's short, but it has pointers to lots of additional resources.
Comments
Post a Comment