In the school of God’s grace
We had driven down to Cornwall many, many times, but this time was different. Arthur was touching the kerb as we went across the roundabouts and didn’t seem able to stay in a straight line.
It was all very jerky and uncoordinated. I felt nervous and thought back to a year before when we were again driving a hired car, but this time in the USA.
Again, we had made this journey many times, but Arthur did not seem to be able to judge the space available. On one occasion we found ourselves driving down the road with all the traffic coming towards us. I have had reason on a number of occasions in my life to believe in angels!
Something’s wrong
We were going to visit friends in Cornwall we hadn’t seen for some time. As I followed Joan into the kitchen she asked me what was wrong with Arthur: ‘He seems so different; he’s not his usual exuberant self’.
This was the first time someone else had voiced what we were thinking. Sometimes Arthur’s speech would be slurred and also he would have the occasional fall. It was all so out of character. Arthur had joined the Household Cavalry at age 18, where he learned not only to ride horses but drive tanks and have great control over his body and its movements.
Talking things over with our friends, we decided to leave the hired car in Cornwall and return to London by train. What a relief! Driving the car to the hire company in Truro we were pulled over by the police who wanted to know why my husband was driving in such a zigzag fashion!
He assured them he wasn’t drunk and explained the situation. So long as we promised to drive very slowly and report to the police in Truro once we had handed over the car, they let us continue. Arthur made the decision then never to drive again.
More symptoms
Arthur loved to go for a walk around the streets of New Cross in South London where we lived, using Nordic walking poles. One morning, on waking I went down the stairs and found him sitting quietly in the armchair.
When I looked closer, he had scratch marks on his face, an injured wrist and a possible broken hip. We had five steep stone steps up to our front door and he had fallen backwards down the steps.
Thankfully, the hip wasn’t broken, though there was a cracked bone in his wrist. The doctors talked about keeping him in hospital overnight for observation. By this time our daughter, Debbie, had joined us and seeing her dad distressed at the thought of a stay in hospital went to find the doctor to tell him it would not be the best idea to admit him.
This didn’t work, so I was dispatched to try to persuade the doctor. Walking back to the cubicle, we saw the curtain suddenly pulled back and there stood Arthur, wires removed from his chest, jacket on, walking stick in hand, declaring he was going home!
The doctor turned to me and incredulously asked, ‘Is this the same person?’ It was agreed he could go home, provided we had rails put up by our front steps and the stairs between the ground and first floors of our house.
Diagnosis
Eventually, an appointment was made for Arthur to visit a neurologist, who arranged for an MRI scan.
Impatient for the results, I called the hospital one day and was told to go to our GP who would give me a copy of the results. The results made no sense to us at all. I decided to call my brother, John. John had lectured in medical science at Bradford University before going into the Church of England ministry.
‘Read it out to me and let’s see’, he said. I read aloud, ‘Progressive supranuclear palsy’. Those three words came to dominate our lives over the ensuing three years.
We began to search the internet to find out what this weird-sounding diagnosis meant. We didn’t like what we found.
Progressive supranuclear palsy (PSP) is a rare brain disease. This is what the PSP Association says about it: ‘PSP involves the progressive death of neurons in the brain. It affects balance, mobility, vision, speech and the ability to swallow, leaving many sufferers eventually unable to walk, feed themselves or communicate effectively with the world around them’.
We joined the PSP Association and I asked my dear friend and prayer partner, Tabitha, if she would come with me to my first meeting. The chairman updated us on what progress was being made in PSP research. No drug has been found to date that can successfully treat it. He did say that there was a supplement called Coenzyme Q10 which could help with symptoms.
Everyone sitting around the huge boardroom table introduced themselves and one man stood up and said his wife had recently died from PSP. They had gone together to Switzerland, but he had returned alone. They had opted for assisted suicide.
I was so glad I had Tabitha with me, as I tried to take in all I was hearing. I was tearful as we walked through the Square garden to get the tube train home.
Coenzyme Q10
I reported back to Arthur on the meeting and he asked me to get him some Coenzyme Q10. It can be bought over the counter, but our GP said she didn’t know what a safe dose was and asked us to do some internet research on it.
We found a clinic in the USA that was trialling Q10 with PSP patients. Previously, they had run trials with patients with Parkinson’s disease, and found Q10 taken in large doses to be safe and effective. The usual dose was 100-300mg a day. These patients were taking 2,400mg a day!
The bottle of capsules I had bought were 100mg, and on hearing from this clinic Arthur tipped the remainder of the bottle into his mouth! Our research showed us that taking Q10 with capsules purchased in the UK would cost hundreds of pounds a month.
Arthur had two sisters in America and he emailed one of them to ask if she could find a supplier there that would be cheaper. Christina replied that she had been taking Q10 following heart surgery as recommended by her doctor, and she ordered ten bottles from her supplier, who shipped them over.
She has sent Arthur ten bottles every 3 months ever since, insisting on bearing the cost, saying it was the least she could do. So began our journey with PSP and God’s amazing provision at every turn in the road.
God’s help
Where does my help come from? This is what our daughter Debbie wrote to me at the time: ‘Hi Mum, I know you know this poem, but I thought I’d send it to you again :-), I love you lots, Debs xxx’
Child of My love, lean hard,
And let Me feel the pressure of thy
care;
I know thy burden, child, I shaped
it;
Poised it in Mine own hand, made
no proportion
In its weight to thine unaided
strength;
For even as I laid it on, I said,
I shall be near, and while she leans
on Me,
This burden shall be Mine, not
hers;
So shall I keep My child within the circling arms of Mine own love.
Here lay it down, nor fear
To impose it on a shoulder which
upholds
The government of worlds. Yet
closer come;
Thou art not near enough; I would
embrace thy care
So I might feel My child reposing
on My breast.
Thou lovest Me? I knew it. Doubt
not then
But loving Me, lean hard.
‘Who is this coming up out of the wilderness, leaning on her beloved?’ I love this verse in the Song of Solomon (8:5). It is in the wilderness that we learn to lean on our beloved Lord.
We will come up out of the wilderness, that’s for sure; but if we lean hard, the richer will be our experience and life, and we will come into a closeness with the Lord that could not be achieved otherwise.
Sue McBryan
To be concluded
