MS progression – some feel is like a punch in the gut.

I read an article today on a MS Facebook site. The man was talking about how it felt when he went to his neurologist and was told that his disease is progressing and he has new lesions. He described how it felt like a punch in the gut. He is only 31 and has relapsing remitting type. Unlike mine which I expect progress because it is that type (and is somewhat uncommon and the speed and debilitation of my progression makes it very rare) is type you would not expect a fast progression. It is only 31 and seems like he is unable to work though that was not real clear in the article. He also had discussed it with others and their comments on his site that they felt the same way. A punch in the gut. When I was first diagnosed my doctor said that I had a good prognosis for the type I had in the age I was. He thought I would be able to still be walking by the time I retired. This did not turn out to be true. Progression was unbelievably fast. Every six months or so I had to find a new way to adapt some physical loss. I walk with a cane as long as possible. A manual wheelchair did not work because of the weakness in my hands. Using a walker work for a while but then the weakness in my arms meant that wouldn't work anymore man to start thinking about a power chair. This is a whole different level. Ramps round the house and figuring out a way to all the chair. Like I said a whole different level physically and financially. I could no longer go upstairs to our bedroom. I started sleeping on a futon bed in what used to be our master bedroom. We really wasn't that big so I slept in there alone with my wonderful cat, Macy. She kept the company and I think this is about a year before we decided to find a ranch that can be modified fairly easy for me. I again could sleep with my wife. Is so comforting to me to her breathing when I wake up in the middle of the night. Somehow I know everything is all right.
So I have digressed a lot on the subject that started with. You do that a lot more lately. I used to read our children Winnie the Pooh books. We love Tigger and Winnie the Pooh is very sweet especially when you described himself as a bear of very little brain. I feel like that is what I am, as a man with very little brain. I know there cognitive issues with MS and that my brain is actually shrinking. Sometimes I feel like the witch in Wizard of Oz and gets wet and yells about it mouthing her. So back to my original is subject. Used to feel like physical losses with MS were like a punch of the gut. Have been to so many that now they just break my heart little more. I read about all these people who have diseases and they are described as courageous in the obituaries and warriors while they are alive fighting their particular disease. I'm no longer either. In my case and MS has won. I am a full quadriplegic and my voice and breathing are affected by weakness in my diaphragm. I'm trying the drug Ocrevus which is infusions every six months. It may have slowed the disease a little but if it works it will be too little too late of my case. I really needed something five years ago. I will try one more year of it and if I don't see something tangible I won't continue it. So I'm so glad that there are people who still have good attitudes, are optimistic and do everything he can to keep the disease at bay. God bless them and their big hearts. Well I'm going to sign off now because my mouth is getting wacky and I'm having trouble forming words correctly. Thank you again for reading my blog.