Marlene’s journey with MND

Marlene Sim (69), from Forfar, was diagnosed with Motor Neurone Disease (MND) in September 2016. One year after her diagnosis of the terminal illness she reflects on how life has changed for her and her family.

Marlene, originally from Aberdeenshire, moved to Forfar 30 years ago with her husband, Bob (70) and children Andrew (35) and Ashley (31), for Bob’s work at a hydro-electric company. Here Marlene worked as a primary school assistant for 18 years, before retiring at 60.

About a year before her diagnosis Marlene started to notice something wasn’t quite right, “I had had a couple of falls but just put it down to being clumsy. Then Bob said to me a few times ‘stop dragging your foot when you’re walking, pick it up’ and I just couldn’t. I liked walking a lot and I was finding it more difficult as time went on. So that’s when I think I realised something was wrong and decided to go to the doctors to get it checked.

“I spent a year having tests done because as we know there is no test for MND. It was a process of eliminating everything else.

“I think I had an idea of what was wrong – I’d thought of all the scenarios possible. To be honest it actually came as a relief to get a diagnosis and to finally know that something was wrong. The not knowing was worse.

“To this day I am still surprised at how well I am handling the diagnosis and how accepting I was at the time. I think knowing that it was nothing I did, or could have prevented, has helped. I’ve lived a healthy lifestyle; I don’t smoke, I eat well and exercise so I couldn’t blame myself.

“We are so fortunate that our family; Andy, his wife Lorna, Ashley and her husband Nathan, are caring and supportive. We are lucky to have many friends who give us help and encouragement.”

As a new grandmother to five month old Harry, Marlene tells us about the challenges she has faced, “One of the hardest things to deal with recently is that I can’t hold my grandson, Harry, because my arms are too weak. I know when he gets older I won’t be able to play with him.

“However, I try to take the approach that there’s nothing I can do to change what’s happening. I just do my best to live my life as normally as I can.

“My progression has been fairly slow up until recently. I now notice I get tired much more easily and each day presents itself with another small challenge to overcome.

“I am more worried about Bob and how his life is changing. I haven’t needed too much support so far but I know that is going to change and Bob will have to become more hands on. I find that very difficult to accept.

“I love gardening but I have had to stop altogether now. I just instruct Bob on what to do but I know he doesn’t really enjoy it, so I think we’ll get a gardener soon. I want Bob to continue doing the things he loves, like golf, instead of what he has to do to help me. It’s important for him to get some time-out.

“The NHS recently provided me with a wheelchair so I can get out and about locally. I still go to my church meetings but have had to give up my duties doing the flower arranging and arts and crafts.

“Every day you just lose something else or can’t do something the way you used to. My life is now full of compromises.

“Although I am a positive person it is still scary; not knowing what is coming and how I am going to progress because everyone with the condition is so different.”

Marlene is grateful for all the support she has received from the charity, MND Scotland, and the NHS.

“I saw my MND nurse within four days of being diagnosed which was fantastic, and she organised for all of the other specialists to come out and visit me. For the first month I didn’t have a free week day.

“We have just had a wet room installed in our house. The council were going to take three months to the approve this but I don’t have that kind of time, I needed it straight away. So, I spoke to MND Scotland and they very quickly and efficiently provided us with a grant to go towards the cost of the adaptations, as well as another grant for decorating the bathroom once the wet room was in place.

“MND Scotland also provided me with a scooter for six months when I was diagnosed, until the NHS was able to source a wheelchair for me, which was great to keep me going. We have used the charity’s complementary therapy service which is really relaxing, and although I can’t get on a table anymore the therapist is able to give me a shoulder and arm massage.

“Bob and I had a lovely break away at the charity’s accessible chalet in Oban. It’s great to get a change of scenery and the accommodation was perfect for our needs.

“The staff at MND Scotland have been just superb. They are always on the other end of the phone with the answers you need or they’ll get someone to call you straight back who does know the answer.

“To say thank you for the support I wanted to give something back, so my family and I took part in the Strathclyde Fun Run in May for MND Scotland. We raised about £2,000 and had a ball at the event. It was amazing seeing everyone come together to show their support.”

Craig Stockton, CEO of MND Scotland, said: “MND Scotland is here to help families just like Marlene and Bob across the country, who are affected by Motor Neurone Disease. I am proud that our staff and services have been of benefit to Marlene and that we can continue to provide support during this difficult time.

“Raising awareness of the illness and the impact it has on people’s lives is also vitally important, so I’d like to thank the Sim family for sharing their experience and helping raise the profile of MND.”

If you have a story you’d like to share, please get in touch with Niamh Callan and Craig Watson in our Communications team at communications@mndscotland.org.uk