I know most if not all of you have heard the expression - "Watch what you wish for. You just might get it" (or similar). I can attest this is true.
During the time my wife and I have been dealing with this disease, I have often commented on the lack of interaction and contact between people dealing with it. With an estimated 4.6 people per 100,000 population, that does not give a large group to interact with. My wife and I are yet to meet in person another patient with MSA, except for a MSA national conference and support meeting we went to a few years ago. This was in Tennessee (we live in N.C.), "promoted" nationally, and even at this event there were only ten or twelve patients.
Through this blog, my other "all purpose blog", facebook, and the various forums on MSA support and awareness pages; I have made contact and "met" eight or nine patients or caregivers of patients with MSA over the past six months or so. It has been great to communicate, even distantly, with people that can share and understand exactly what you are going through.
Now for the downside and the reason for the title of this disease. In the six months or so I have "known" these people, two of the people afflicted with this terrible disease have succumbed to it.
The contact I was wishing for (and enjoyed when it occurred) becomes itself a reminder of how insidious and relentless this damned disease is. One fourth of the people I have "met" that have this disease have died within six months of our first contact!
Damn I hate this disease. Bless everyone that is suffering from it - patients, family, and friends - even those that only meet like this.
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I've thought of that. I know it can't be easy. I'm sure, in a way, you might be looking at what could happen in the future. And, this disease is horrible. I pray for you, your beautiful wife, and the friends you've made daily.
ReplyDeleteI hate the disease, too. I just hate it.
I love you.
Holli
God bless you also. I'm sorry for your loss. I feel your pain and hate that this disease has been for you as I am now crying as I read your posts. My mother has MSA also and has had this horrible disease for 6 years. She is 65. I am her caregiver and her only child. I have a caregiver during the day to be with her while we work. Thank God I have a supportive husband and 2 sons. Also, 2 of my mom's 3 sisters and 2 cousins have been supportive in helping occasionally. It is so heartbreaking seeing the cruelness this disease has. I have tried everything possible for my mom that the doctors have said we could try, I even tried stem cell treatment, but it didn't work. I don't know how much longer she has but know it will get worse. I'm always hoping and praying for a miracle.
ReplyDeleteThank you for sharing your life with MSA.
Joyce
Thank you very much for your blog. As a caregiver of soomething who has MSA, it is as comforting as it can be to know that theres someone else out there who understands. MSA is hell.. and it shall be damned~
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