DENIM Blogs

In our blog series, we are handing over to our wonderful Patient and Public Involvement and Engagement (PPIE) group members. They share their experiences of using NIV, and what it is like to work alongside our researchers to help shape a more inclusive NHS system for people living with MND. 

At first, I recoiled at the very thought of NIV, but now I would be lost without it.

The Motor Neuron Disease Clinic at The Royal Stoke Hospital has different specialist teams. One area is Sleep and Ventilation. This department started an investigation into how well I was sleeping. The somewhat alarming conclusion was that I had severe obstructive sleep apnoea in addition to MND! The treatment would be to use a non-invasive ventilator (NIV) at night. I didn’t like the prospect of wearing a mask all night. Also, I felt that I wasn’t experiencing symptoms like falling asleep often in the day or feeling drowsy. So I rejected the offer of an NIV machine.

The turning point

An incident one evening changed my mind. After my evening meal, I fell off my chair, cut my head on the corner of the sideboard and ended up on the floor, unable to move, and with my face in a pool of blood. I managed to grab a phone and call for an ambulance. The call handler asked several questions; one sticks in my mind, “How much blood is there, a mug full or less than a mug full?”

The upshot of all this was that I changed my dining room chairs for ones with arms, and I decided to accept the offer of the NIV! I was convinced that I had fallen asleep sitting at the table, and that sleep apnoea was to blame. In addition, every time I started working at my desk, I became sleepy. I collected my NIV machine from the hospital on the 5th of July 2023. After instruction, I’ve used it every night since.

Getting used to NIV

There were, of course, a few teething problems. One morning, I awoke to a mask with blood in it. I had bitten my cheek. There were several symptoms that affected the use of the NIV. The saliva secretions would almost fill the bottom of the mask. I remember dabbing them up several times before deciding to finally put on the mask. The main problem initially was that the full-face mask, covering my mouth and nose, made a wound on top of my nose. The District Nurse dressed the wound, and the GP was involved. After consulting the helpful Sleep and Ventilation Team at the hospital, a different mask was suggested, one that covered my mouth but fitted under my nose. I still use this (F40) mask today.

At first, my NIV was set in CPAP mode, which meant that the flow of air was at a constant pressure. The NIV machine was checked at the regular MND clinics, and any problems were discussed with the ventilation nurse and with the consultant doctor. About a year after starting to use the NIV, I started to become drowsy in the day again. It was decided to change the CPAP mode to one where a pressure was set for breathing in (IPAP) and a different pressure for breathing out (EPAP). This mode is still in use today, although the pressures are checked and changed if needed.  Also, a second NIV was provided for use downstairs in the daytime, and in case a backup machine was needed if the nighttime NIV developed a fault. Throughout this period, I had the help and support of the MND Specialist Nurse who visited monthly.

My involvement in the DENIM trial

The opportunity to be part of the DENIM Patient and Public Involvement Group has been so rewarding. DENIM is such a good example of where a research project can help people with MND     . I have been fortunate to have the backing of the Sleep and Ventilation Department at The Royal Stoke Hospital, together with the MND Coordinator and Specialist Nurse. If there is an equipment problem, I phone the NIV Helpline and leave a message. A return call lets me know that a new mask or other item will be sent in the post. I’m aware that not all NIV users are so fortunate. DENIM sets out to deal with that inequality.

There is, of course, more to be done. The potential for NIV to enhance the quality of life for MND patients is huge. It might even extend life! So, DENIM matters for the whole MND community.