NMOSD and family: NAVIGATING THE CHALLENGES WITH POSITIVITY

BY LEDA BRESNOV

Managing my initial diagnosis was hard

When I was first diagnosed, it was very difficult. I didn’t know what to expect, what the disease was, and whether I would even live. At the time in 2018 when I was Googling for information, there wasn’t much available. Because of this, my husband and I decided that we needed to be totally open and honest with our children even if we didn’t have all the answers at the time. Our daughter and son were 17 and 13 and it was important that if they had questions, they would come to us.

We live in a small town and before my diagnosis I had been very active. I knew that when people saw a change, they would start talking and second-guessing my condition. I wanted to avoid this, and to be totally open with them (and I also used social media to discuss NMOSD) to avoid people making incorrect assumptions.

At the time, the 13-year-old was particularly scared, and we told him only to trust the information that he received from us.

The Impact of the new diagnosis on my family and how I communicated with them

Before I realised it was NMOSD, and the potential physical impact, I knew that I would fight as hard as I could so that I was capable of being a Mum. This was very much the message I was giving my kids.

After the diagnosis, I was able to give my family more certainty around treatment and management options and reassure them that I had a doctor to fully support me. I also encouraged my husband and kids not to be worried about my disease, and to think of each day as it comes.

It was a difficult time for my kids to comprehend. My daughter found it hard to talk about it, while my son was much better at articulating his feelings.

We had times where we cried together and were totally honest with our feelings. We were always trying to stay positive for the future. It was a very hard time for my husband, who had to become super-man and look after me as well as the kids! I was also very lucky as I had a good network, with friends who had kids the same age – this really helped us.

My advice for other patients who might be in a similar position

For me the most important advice is, do what works for you.

While I’ve always had ups and downs, I have always stayed positive. I see that you have two options in life, you can give in to the negative and the sad side, or you can go the other way and remain positive.

Even when I see people doing things that I can’t do anymore due to my disability, I allow myself to be sad, but I know that this feeling will pass. It’s important to be true to your feelings.

My family and I are now in a very good place, and we have adapted. They are very thoughtful and aware of how to plan activities at times that work for me, being mindful of when I will be feeling my best. Even my children’s girlfriends offer such great support and are not afraid to ask questions.

I am very, very lucky that I have such good family and friends to support me through the ups and downs.

After my diagnosis, we spend much more time together as a family, we really value each other’s company, and my kids still love travelling with us which is a true blessing! 

My tips on staying positive

• Learn to be kind to yourself – the kinder you are, the better the NMOSD will treat you.  
• Look after yourself – I was forced to slow down and I’m grateful for that.  
• Remember the good things – even in the darkest of times, I remember that ‘this too shall pass.’  
• Being grateful – I have gained so much, even though I can’t run or dance anymore.  
• There is hope and a great life ahead.