By Sharron Mills

Sharron shared her story in a blog last month. Now she tells more of her personal story and offers practical advice for MSA patients.

Tears

There have been very few tears from me. I’m not much of a crier, and I can only think of a couple of times when I let my guard down. Getting choked up has happened a little more often and always when discussing something relating to the grandkids. They are my Achilles heel. Because they care about me so much, I worry about the impact of my illness on them. They have been very helpful and loving when they’ve been needed, and they are soft hearted young people. It is heartbreaking to think of the sadness that I will cause them. The only response I can think of is to create happy memories while we can and to take happy photos for them to reminisce over.

Romance

Bruce and I have been married for forty-three, at times turbulent, years. We don’t argue, but we’ve had some serious rocky patches – his clinical depression, and losing our house and business in the global financial crisis for example. We rolled with the punches. For better or worse, right? Who considers neurological symptoms, not even vague neurological disease but actual symptoms, when they say those marriage vows? Symptoms associated with bladder and bowel dysfunction, personality changes, loss of speech, or inappropriate emotional outbursts… it is not surprising that some marriages buckle and collapse under the strain of MSA. Ours won’t.

In the shower, Bruce has been known to sing, “You can leave your hat on.” He cannot hit a note, but that probably adds to the absurdity and the comedy of the situation. We laugh a lot, usually followed by kisses, and maybe a hug if it’s not going to overbalance me and make us both fall in a heap. Affection is another defense strategy. There are times when I feel ignored, but remembering the kisses and hugs and reassurances of his love at other times gets me through and prevents me from saying something I’ll regret.

I can’t be sure that we can maintain the status quo as things get worse, as they surely will, but our intent is there.

Fighting the MSA Beast

Reassuring someone by saying they are a fighter is not always helpful. We can’t fight what’s happening in our brains. Doctors can help us to treat the symptoms. Exercise helps retain mobility. A high protein diet might avoid or slow the loss of muscle mass, but the disease is relentless. Continuous rapid disease progression can make a fighter feel like a failure. Attributing some other patient’s slower disease progression to their fighting spirit makes those of us who have not been so lucky judged as though we have given up too easily and thrown in the towel. Because the disease is unique to each unique individual, some fortunate few will progress more slowly.

Toileting

I believe this is something that people in general get very curious about, possibly because loss of such personal privacy and independence is something we all fear. Well, there will be no embarrassing personal revelations from me. It has been both confronting and comedic to find myself having to discuss intimate details of my bladder and bowel habits with health professionals who are total strangers in person and over the phone. At least I hope they were all health professionals. I know there are people who are happy to discuss their bowel habits in any company. I was not one of them, not even with Bruce. In my new normal, that has changed. There is no longer any such thing as too much information as medical issues trumps any self consciousness.

Tips

My best tip to anyone who is newly diagnosed is to finish any project, take any trip, write that book, paint that room, do whatever you want but do it now, because next week is not guaranteed. I thought I would have longer to complete some sewing projects and do some furniture restoration. I was wrong. My dexterity, strength and mobility have deteriorated faster than I expected and some projects have had to be abandoned.

My second tip is, do your own research, but use reliable websites such as The MSA Coalition, the MSA Trust, and the Mayo Clinic sites for starters. There is no substitute for education. It helps you to educate others about this rare disease. It also gives you the knowledge you need to advocate for yourself and your own future needs and, I believe, as awful as this illness is, learning more about it takes away some of the fear of the unknown.