Coping With Multisystem Atrophy

I was on a trip to Ca. with my husband of many years, and we had to come home. I had suddenly lost control of bladder, bowels, blood problems, bleeding, clotting. We got home, went straight to our local hospital. I had four transfusions, due to bleeding and other problems. Although, these problems with my blood was other diseases, I still had become more sick, with new symptoms. I was put into hospice, and my husband was told three to ten days, and that was it for me. Well, as you can see, I am writing this story. I got out of hospice. (two full months tthere).

Since I have had Aspiration Pneumonia incontence [incontinence], blood bacteria from backed up kidneys and bladder incontence [incontinence]. I cannot look up nor down anymore, for my eyes quite doing such easy things, as they should, but don’t. When I try to smile, I shake and grimmace, but still I try a little grin when I can. I have a very slow digestive system now, and eating doesn’t seem to make my life easier, but I still try. My swallowing is limited, but I do use “Thick-it” which helps with thin liquids.

Multiple System Atrophy is rare and cannot be totally diagnosed until death, but can be pretty much ruled in when you have most of the criteria. High blood pressure laying down, and low when standing up. I am very careful and slow to get up, and sleep with my bed raised up six inches, and we purchased the temperpedic bed with head and leg controls, so that makes my sleep much better. My thinking is slowed, and I burn much of what i try to cook, so when alone I make sure I microwave only. That is important to do things to make it safer for you and your family. I am in an electric wheelchair, which helps me from falling, suddenly, and without warning. My husband does most of what I use to do as a wife and mother of two sons. Now, we have five grandchildren, and visits from them, and much love helps me daily.

I hope my sharing helps someone else. I know MSA is very difficult to diagnose. We now know I started symptoms at fifty-two and am now fifty-seven. My mother had Progressive Supra-nuclear palsy, and she passed after seven years with PSP. She was my hero and mentor. The doctors were surprised that I would have gotten any problem like my mom, since it is very rare to share these neurological diseases, but since and due to mom, it helped to find out what was happening to me a lot more timely. Again, so rare that I would have problems too. It is like one in a hundred thousand that I would have a disease like my mothers, so the odds made it difficult for about five years, until more and more neuro problems began to show up.

Time is shorter, but it is that way even for the healthy..gotta put it all together some days, and just know how much you are loved, and how much you are still capable of loving others.

Take care and hope this helped, sharing my story with you. Therese