John's story

John, who lives with Primary Progressive MS, tells the MS Trust why he thinks the Advanced MS Champions programme could benefit people living with advanced MS.

The first thing I must say is that I have been very fortunate with the impact of having Primary Progressive MS and the impact of having it during a pandemic.

My Primary Progressive MS appears to have a very slow progression. Symptoms have been getting worse over the years but very slowly. The positive thing about having a slow progression is that I have time to find and try solutions that work for me. As I gradually find I cannot do things, I have adjusted what I do so the impact is softened.

I have several MS symptoms. These are, in order of living impact: fatigue, mobility (foot drop and balance), bladder urgency, pain in limbs and, finally, cognitive issues.

When I worked in the city, walking to the railway station and then sometimes having to stand for 30 minutes on a train wore me down. I found two solutions to this. One was my very reasonable employer who allowed me to work from home on some days and the other was the Access to Work scheme who supplied me with a powered wheelchair. My employer also allowed me to park at the office. A reserved car park space in the centre of the city of London is a very rare thing.

Before the pandemic, I had agreed with my employer that I would work from home three days a week. As soon as the pandemic started, they told me to just work from home every day. As my employer started to plan the return to the office, they told me I could just permanently work from home.

Working from home resolved so many problems. My commute is now to the next room. Mobility between my desk and the meetings I have to attend is zero as all meeting are now virtual. My bathroom is always close by and because I am not driving or carrying a laptop around then the limb pain, while it is always there, is not so aggravated. Then without all these symptoms being so present, I find the cognitive impact is reduced. Access to Work also put me in contact with an organisation called Genius Within who helped me develop strategies for coping with my workload.

There is, however, a negative side to working from home like this. While my immediate team colleagues have quickly got used to me being remote, I think my disability has become invisible. When people meet me in person, they can immediately see that I am a disabled person - the wheelchair is a bit of a giveaway. But now people do not see it and can start to forget. Now I am not looking for sympathy from colleagues, but it can help if everyone has a general understanding that I may sometimes need to press the pause button occasionally. Sometimes I am not up to attending an 8 AM meeting with my team in Hong Kong and then working late with my team in the United States. This is enough of a problem for people without a chronic condition.

Having Primary Progressive Multiple Sclerosis can also make me invisible to my healthcare team. There is only very limited access to Disease-Modifying Drugs for Primary Progressive MS. There are some treatments for specific symptoms that I was offered several years ago but most of these seemed to have side effects or intended effects that were worse than the symptom they were treating. They did give me Fluoxetine (Prozac) that I took for a while, but in one of my annual appointments, I asked the Neuro if this drug actually does something for PPMS or if it just makes me not care so much that I have it. She said it was the latter, so I stopped taking it.

The only prescription item I now have and am frequently very thankful for is my sheath and bag. This simple and non-invasive solution to bladder urgency meant I could drive 50 miles to my office and sit in endless long and boring meetings without worry. Of course, now working from home this is hardly needed. In the last year, I have only used it for two trips out to get vaccinated. The sheath and bag solution was provided by my continence nurse but once the solution was provided and I had advice on how to strengthen my pelvic floor muscle we determined I need only contact her should I need to. My only other 'treatment' is 5 vitamin D tablets every day as advised by my first MS nurse. So where does this all leave me with my healthcare plan? I only see a neurologist once a year. I can call my MS nurse should I need to, but I am doing alright.

This lack of interaction with my healthcare professionals has presented major problems. I noticed the lack of access to healthcare when, around a month ago, my situation did hit a bump in the road. My short-term medical driving licence expired. I had to call my MS nurse to find out who my current neurologist was, and I had to call my GP practice to find out who my GP now is. I have never met either of them. It was no surprise then that the DVLA required a medical examination. This, in the middle of a pandemic, turned out to be a telephone examination but then my driving (what little I do now) is fine. I am on DLA (Disability Living Allowance) and I have been waiting since 2013 for the 'invitation' to replace it with PIP (Personal Independence Payment). Like with the DVLA, I am not sure how the 'machine' that processes my PIP claim will understand how someone with a severe chronic condition can have so little current interaction with the healthcare system. Here is where I could really need the help of an Advanced MS Champion, a familiar face with who I can have some continuity of contact.

While I should be, and am, grateful that my disease has hardly changed and my solutions are working well for me, I have had very little contact with any healthcare professionals. Even my “are you still alive” annual Neuro appointments stopped in 2019. It was cancelled and I have heard nothing since. Yes, I could give them a nudge. I have even considered having an appointment with myself and sending them the result as they usually send to me and my GP after my annual appointments. I guess during a pandemic they probably have better things to do and there are almost certainly other patients more in need of their assistance, but I cannot imagine how this lack of access must feel to people in more need than me.

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