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Living with MND on the other side of the world

 

Frank Lyons

Rozelle, New South Wales

Frank is almost 63. He was diagnosed with Motor Neuron Disease (MND, or known outside of Australia as ALS) a year ago. Born in Scotland, he has been married to his childhood sweetheart Rae for 41 years. Frank can no longer speak well, and he emailed me his background before we met at his house. He now uses an iPad and app to communicate, facilitated by his wife.

 

Moving to Australia

Frank: I was born in Scotland in 1952, the eldest of five children. My sister moved to Australia in 1981, and my daughter in 2006. I have other Australian relatives from my great grandmother, who emigrated to Australia in 1925. And so I always wanted to come to Australia.

In 2007, Rae and I were sponsored to work in Australia. While we did not expect to stay permanently, we have been very happy living here. My daughter Ruth lives close by. But Scotland will always be home. My son still lives there, and we returned last year for his wedding. But now, with MND, we are planning a final trip there in March 2016.

 

Being diagnosed with MND

Frank: Not a lot of people know about MND in Australia. It is a little better understood in Scotland, where prominent football players have been diagnosed with the disease.

My symptoms appeared in late 2013, when I first experienced a slurring of my speech and had difficulty swallowing. Soon afterwards a neurologist told me that I had had a minor stroke. I saw a speech therapist, but after several months there was no improvement and I started to lose weight. I then saw a new doctor, and he referred me to the Brain and Mind Institute at the University of Sydney. 

Frank and I are sitting on the couch, and Rae sits on a free floating chair. Frank is propped up in the corner of the couch, his iPad on his lap. He is positioned to look at both Rae and I, but he can choose to gaze at the spectacular view of Parramatta River. He does so as Rae starts to speak.

Rae: I knew Frank was ill. We went to see the Archibald Prize in August 2014, and I could see by his stance – his posture looked curved – there was something wrong. I thought it might be Parkinson’s disease or Multiple Sclerosis… I never thought it could be MND. It was a shock.

Frank: We do not know what causes MND, but I think stress played a role. The final six months of 2013 were overwhelming. I found out my brother had cancer, and Rae and I returned to the United Kingdom in October 2013 to support him – a year before I was diagnosed and around the time I started showing symptoms. Also in the same month I found out that I would be retrenched before Christmas. My brother then passed away in December. I was, however, then lucky to start with my current and very supportive employer, in April 2014.

When told the diagnosis in September 2014, we were about to return to Scotland for my son’s wedding. My doctor later admitted that he nearly didn’t tell me the diagnosis before we left. But confirming the diagnosis gave me the chance to tell my children. It was such a struggle to have to tell them. We did not tell anyone else until after the wedding, but many friends could see that there was something wrong.

After the diagnosis, the only thing I could think of was that 90 per cent of people with MND last between two and five years. I felt like giving up. I told my wife that ‘we are going home’. I suppose I took the same view as my brother had when it became clear that his chemotherapy was not working: he stopped treatment to spend his final time with his family.

 

Adapting to life with MND

I have had consistent and helpful support in the year since my diagnosis. The family is no stranger to neurological disease and movement disorders – my daughter-in-law Hannah has Fibromyalgia, my ex brother-in-law has Multiple Sclerosis, and I have two cousins and an aunt with Cerebral Palsy. And I was given clear support and advice on how to live with MND at the Brain and Mind Institute.

But I struggled to listen. I was in shock; maybe I still am. My wife and I have never experienced any major illness, and there is nothing I can do to get back to how I was. I am challenged by the necessity of adapting to a new lifestyle and taking new medications. Sometimes I agree to try a new drug or a new way, but then I give up. The deterioration of my speech, combined with my difficulty swallowing, lack of appetite and large weight loss, at times make me question why am I doing this. Nothing will actually make me better.

Frank is emotional, and this makes it more difficult for me to understand. Much of this interview is in Frank’s own words, but words emailed to me before I met him. I have used these words to fill in the story he told me in person.

At this point, I decide to ask their thoughts on the Australian healthcare system, which they are now intimately acquainted with.

Frank: I see my neurologist every three months, and I have a clinical nurse Margie on call if we need her. She is always available, and has great knowledge and empathy. I have never been admitted to hospital, I have always been a day patient.

Rae: It has been hard navigating a new system – it is not what we are used to, and we have no background knowledge. We have found the Australian system to be confusing, especially the difference between public and private. We have private healthcare, but we often feel that we pay more for no extra care or service. We have learned to call and ask for help. Looking back, I think we left it too long before we asked for help, that was the result of our confusion understanding who to talk to and what the process was.

Now we receive support from palliative care, community care and occupational therapist, with speech therapist, dietician, respiratory care through the MND clinic. At first, we always had different people coming to our home to help, and there was no consistency. Now we have a permanent person, who comes once a month, and it is better.

Frank: I have technology to help me speak, which is good, but it is not the same as talking. This just depresses me at times. I take many medications, including Rilutek, which is the main medication for MND (and in Australia is available through the Pharmaceutical Benefits Scheme). I also take medication to manage my saliva management, hypertension and blood flow.

I have a PEG tube (I later looked this up. PEG stands for Percutaneous endoscopic gastrostomy, and refers to a feeding tube in the abdomen, used when oral feeding is no longer an option) as I can no longer swallow. I had lost a great deal of weight, and cannot eat much more than soft eggs, soup and liquefied food. The new protein I use in my PEG has enabled me to put some weight back on.

I have a B Pap machine to assist my breathing at night and an electric pillow lifter, as I can no longer lie down. Rae and I no longer sleep in the same bed together... there is simply not enough space for Rae to sleep comfortably.

Rae: I think Frank could eat a little more than he does, but he chooses not to. It is psychological. He chooses not to use the thickener that is added to water to help him swallow. I know he stays hydrated through the PEG tube… but I miss the company at the dinner table. Being able to try new food and cooking together was a real pleasure. It is another part of our life that we have lost.

Frank: MND is more variable than I thought possible, and no one else experiences it in the same way. For me, it is hard to eat. I don’t want to. It is depressing.

The first time I couldn’t swallow it was very scary. It happened in the middle of the night, and I could barely breathe. I don’t like going to restaurants any more either. I can’t eat the food – I’ve had to spit it out in the past – and I have no appetite. And I can no longer enjoy a Guinness or a gin and tonic.

Not being able to speak is exhausting. I can use the iPad, but it is not the same. MND NSW has free communications apps to help people communicate. The artificial voice sounds robotic, but if you upgrade and pay you can choose the accent that speaks, although there is not a Scottish one! But it helps me at work, and in this interview. I can pre-program questions and comments.

Rae: I miss Frank’s voice. We could have recorded Frank’s voice and programmed that into the app, but now we can’t. When he still had his voice we didn’t know what we would need.

We have engaged with MND NSW. We attended an information evening, but at that stage we both felt we were not ready to face up to things.

We are usually always together when we leave the house. We no longer walk, we drive everywhere, and we have a disability parking permit. Frank has to wear a collar to keep his neck up, but that creates its own problems, as it restricts his breathing and swallowing so he sees no reason to go out. It is a catch-22. We found a collar with a new, experimental design from a university in the United Kingdom, but it has not been able to get enough funding to be made yet.

Frank: It affects the family as well. My daughter, Ruth, is very strong, very independent. She doesn’t say much about MND, or the future. She talks about how to manage on a day to day basis, but none of us talk about the future. She has other stresses in her life as well. Her partner’s mother has cancer, and he is living overseas to care for his mother at the moment. Ruth has a lot to deal with.

Rae: Frank was feeling very low earlier this year. Depressed, and maybe angry. He has never been the type of man to show his anger or argue back before… although now he can’t physically argue back anyway. Francis and our daughter-in-law Hannah flew in from Scotland to surprise Frank in July. It was beautiful.

 

Planning for the future

Frank: People expect me to be in a wheelchair, but I still work part time. My employer has been fantastic in many ways. They pay for a return cab each day so I can make it to the office. When I was first diagnosed I emailed everyone in the office. One colleague told me that she had a relative with MND. In hindsight, working for this employer has been a good outcome.

But even though I have this support, I will be retiring given my condition.

People have a negative perception of MND. I am normally a positive person: you can’t just sit in the dark the entire time. But there are dark days. I get frustrated. I think that is selfish. But living with MND is hard. I have no motivation to do anything, and although I know that is so hard on Rae, I struggle to change. They say only one per cent of people with MND live for ten years.

My life is at an end, but it has been a good one.

I ask if their roles have changed since MND entered their lives. Rae laughs.

Rae: As far as home goes, I do everything. I know Frank keeps most of his energy for work, but I get very frustrated when he does not even make a cup of tea. Frank could make an effort to do more, and people tell him to try and plan, but Frank does not recognise the need, he thinks ‘why bother’.

I do tend to nag him but call it ‘tough love’. I try to motivate him. But he has said many times ‘I just don’t want to be here’. Before he got the PEG fitted he wasn’t eating and we had a constant battle of wills. I once asked him if he was deliberately not eating as I knew he just wanted to fade away. His reply was an emphatic ‘no!’.

People have dropped away. All of a sudden, they don’t call anymore. Frank can’t talk anymore. And there are other ways, like email and text message. I am a member of a women’s fitness club and I am very fortunate to have made friends, which is a great outlet and they are all very supportive. This helps me immensely.

This is clearly distressing for both Rae and Frank. This brings them both close to tears, and I admit, myself as well.

Frank: Rae and I, we had planned to retire and travel. But I just want to go home now, to Scotland. Rae wants to stay in Australia.

Frank stops at this point. Perhaps he has nothing to say, or perhaps there is nothing to say for a man whose body – but not mind – is failing him.

Rae: We don’t talk about the future. There is no cure, so we focus on managing each day. But we have to look at the dark side. We need to talk about a carer’s plan, our future lifestyle, and Frank’s wishes.

I was offered carer’s support, but I am not ready. Perhaps in the future I will be.

Frank: I do not want to think about what will happen when I get worse. Even going home to Scotland is a challenge, I have to consider whether I should give up the lifestyle I have in Australia, even though it is expensive. 

My attitude puts stress on my wife and daughter, I always put myself first. While I have had to change my lifestyle to assist me, and I have the support to continue to do that, it is still a challenge. I have a terminal illness for which there is, at this stage, no cure. I have to deal with it, but I am trying to do it my own way.

The continuing decline is the biggest challenge. Rae and I adapt, but sometimes I struggle. Physically, I know I am what I am, but emotionally, I just want to go back to the way I was.

I want to go back to who I was.

Frank and Rae hug me when I leave. They do not have many friends here as most are back in Scotland. I think they enjoyed my company, even though I am a stranger.

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