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For friends who have kindly followed my dystonia travails I need to give today's update. When I called the neurological department's secretary she told me (in pastoral tones!) that not only was my consultant unavailable but that all appointments in the clinic had been cancelled for April.
Suddenly, holding on for my botulinum injections has a wide-open dimension. Really wide open. Always, in past experience, twisting and aches have accompanied any delay. As I mentioned last time, I am still amazed and grateful that I am not yet suffering these predictable problems.
There can be only two reasons. First, and vitally, prayer has been sustaining me. A tangible awareness of the strengthening power of healing prayer has accompanied me through this. I know many friends have been remembering me. Second, it is extraordinary how I been put on this Parkinson drug following my visit to the sleep clinic at the beginning of March. It is strong medicine which you build up over a month and in its maximum amount it can cause vomiting and extreme tiredness (plus delusion and paranoia). I have certainly suffered the first two side-effects...Carol hasn't noticed that last two yet. However, because it is a Parkinson drug and dystonia is a branch of Parkinson's wouldn't it be a quite wonderful further side-effect if it can hold off my deterioration? Of course, this is all part of the bigger issue of prayer!
Thank you for remembering me through this. All the time now we are hearing of others' distressing situations which put my woes into perspective. We all need to support each other don't we?
Monday, March 30, 2020
Friday, March 27, 2020
Reaching Week 22
Since last Sunday's post, some of you have kindly been in touch about my seriously delayed injections. (PLEASE SKIP THIS if you are not following this saga. And frankly this does seem very personal in light of Covid19's global repercussions). Ever since 1987 when my dystonia disease was diagnosed,and I was included in the first clinical trials at the National Neurological Hospital for injecting botulinum straight into the offending neck muscles, my life has been marked by injections every 12 weeks. This pattern has sent me plodding regularly into clinics in London, Chicago and Cambridge. My annual diary has been scheduled accordingly.
What happens if I have missed by a week or two? I'm in trouble! By the twelfth week I have often felt the beginnings of pain and tautness in my neck with restricted movement. However, my Cambridge consultant has been experimenting. As I have grown older (she noticed that!) she is lengthening the time between injections from 12 weeks to 16 weeks. This has happened now three times and though there was some loss of movement, and I certainly needed injections at 16 weeks, we both rejoice at successfully going longer.
But, alas, my consultant became ill at the beginning of March with the clinic cancelled until further notice! 16 weeks had already seemed a stretch....next week I will enter Week 22. Yet. it has been an extraordinary time of waiting because my expected deterioration has not happened to any degree. I was expecting much pain with twisting by now! It's down to much prayer support and perhaps a coincidental Parkinson drug the sleep clinic has put me onto. Maybe one of God's incidences! I cannot explain it but I am so grateful and, of course, I am hoping the clinic will reopen very soon. Praying friends please keep on adding me to your long lists.
What happens if I have missed by a week or two? I'm in trouble! By the twelfth week I have often felt the beginnings of pain and tautness in my neck with restricted movement. However, my Cambridge consultant has been experimenting. As I have grown older (she noticed that!) she is lengthening the time between injections from 12 weeks to 16 weeks. This has happened now three times and though there was some loss of movement, and I certainly needed injections at 16 weeks, we both rejoice at successfully going longer.
But, alas, my consultant became ill at the beginning of March with the clinic cancelled until further notice! 16 weeks had already seemed a stretch....next week I will enter Week 22. Yet. it has been an extraordinary time of waiting because my expected deterioration has not happened to any degree. I was expecting much pain with twisting by now! It's down to much prayer support and perhaps a coincidental Parkinson drug the sleep clinic has put me onto. Maybe one of God's incidences! I cannot explain it but I am so grateful and, of course, I am hoping the clinic will reopen very soon. Praying friends please keep on adding me to your long lists.
Wednesday, March 25, 2020
Chocolate biscuits!
In our self-isolation, the daughter of one of our church friends very kindly offered to do any shopping for us at our local Aldi. To my utter astonishment Carol begged her to get a packet of chocolate biscuits and some sugar. Of all the things we need! What a parody of life's essentials - you would think bread and milk would be a higher priority. Unsurprisingly, I questioned her judgment.
Well, someone else has ensured we have bread and milk as she explained why these two items were vital. Our temperamental boiler failed a few days ago leaving the house cold with no warm water. Normally it responds to a reboot and adjustment of water pressure. However, I realized with dismay that the whole system had closed down. At first I thought it would be a socket fuse. But after fitting a new one the boiler only fired up for 5 seconds before dying again.
Several hours later our heating engineer arrived with his mate and, after tea (with sugar) and chocolate biscuits, diagnosed a fault in the motherboard. He promised to try for a replacement and if successful would return as soon as possible. So, this explained Carol's desperate need.
Happily I can report that the two engineers returned successfully and sustained by more tea and biscuits they fitted a new motherboard. The gas ignited with a welcome roar as the boiler came to life and brought smiles all round. Carol has always been keen on hospitality....but this rather takes the biscuit (especially since she can't eat them)!
Well, someone else has ensured we have bread and milk as she explained why these two items were vital. Our temperamental boiler failed a few days ago leaving the house cold with no warm water. Normally it responds to a reboot and adjustment of water pressure. However, I realized with dismay that the whole system had closed down. At first I thought it would be a socket fuse. But after fitting a new one the boiler only fired up for 5 seconds before dying again.
Several hours later our heating engineer arrived with his mate and, after tea (with sugar) and chocolate biscuits, diagnosed a fault in the motherboard. He promised to try for a replacement and if successful would return as soon as possible. So, this explained Carol's desperate need.
Happily I can report that the two engineers returned successfully and sustained by more tea and biscuits they fitted a new motherboard. The gas ignited with a welcome roar as the boiler came to life and brought smiles all round. Carol has always been keen on hospitality....but this rather takes the biscuit (especially since she can't eat them)!
Sunday, March 22, 2020
Worship going zoom
Today was my first experience of worshiping courtesy of Zoom with my local Baptist church in Histon. I know that some of you online aficionados will use zoom frequently and are used to its capabilities, but to my novice eyes it was quite extraordinary to see all these little video screens joining up friends at church. Before the service we were all unmuted and so greetings flew across cyberspace. As worship time drew near we were muted and the four people taking part in the service were highlighted in turn.
We are remarkably fortunate to have a professional IT expert who masterminded the ambitious linking together of videos, power-point, shared Scripture, unison congregational prayer with the sermon. Of course, it wasn't the same as being in church....but it was a truly powerful coming together. And at the end, unmuted again, we shared news. At one point the spotlight surprised me and as I gave thanks for the worship experience Carol asked for prayers as I await a desperately needed neurological injection (over 4 weeks late). Immediately someone requested prayer for me in which the whole church joined All these little pictures of friends sharing together. Quite wonderful.
Technology has brought blessings and curses. This was definitely a great blessing. Thanks to everyone who worked so hard to allow our online congregation to meet today.
We are remarkably fortunate to have a professional IT expert who masterminded the ambitious linking together of videos, power-point, shared Scripture, unison congregational prayer with the sermon. Of course, it wasn't the same as being in church....but it was a truly powerful coming together. And at the end, unmuted again, we shared news. At one point the spotlight surprised me and as I gave thanks for the worship experience Carol asked for prayers as I await a desperately needed neurological injection (over 4 weeks late). Immediately someone requested prayer for me in which the whole church joined All these little pictures of friends sharing together. Quite wonderful.
Technology has brought blessings and curses. This was definitely a great blessing. Thanks to everyone who worked so hard to allow our online congregation to meet today.
Wednesday, March 18, 2020
Saying goodbye to Peter
I am a great believer in home groups complementing church worship. It's where you learn together to pray, listen and love. Our group contained a curmudgeonly member, Peter, whose solid faith in Jesus and love of Scripture and theology, coupled with a strong personality and forthrightness, had a tendency to dominate! For many years he worked at Queen's College on the maintenance crew (- I mentioned him several posts ago as the decorator of Erasmus' rooms). Diagnosed with pancreatic cancer last year he courageously carried on living as fully as possible facing increasing pain with such Christian spirit - full of witness and love. 'I have the victory in Christ' he said.
Just before he died all the members of our group visited to pray around his hospice bed. He was wide awake and though his voice was weak he participated fully as we held hands. Everyone prayed for and with him. Several were friends of long standing whose personal prayers could not have been offered by anyone else. It was profoundly moving. His own prayer about his times being in the Lord's hands and his love for the Lord was profoundly moving too. Next day he slipped into unconsciousness and the day after, with a church friend close by, he went to glory. It was as though our group had shared in a benediction.
Yesterday, Carol and I went to his funeral. One of our group spoke about Peter's life and I learned fresh things about him and his service in the church and community. He also referred to his forthrightness and how these last months saw him mellowing. Our pastor then shared how Peter had instructed him on what to say! That everyone in the chapel needed to be challenged about God's love for them and that it is never too late to be accepted by Jesus. And then Peter had asked for a reading. I have never heard this in a funeral service! It was James 3:1-12 Taming the tongue. About the damage caused by a thoughtless tongue. At his funeral he wanted us to hear him repent about his unruly tongue in the hopes that he had apologized to all the people he had hurt. We all knew about Peter's tongue but what a way to confess and challenge us - all wrapped up in the assurance of God's forgiveness and love. It was a truly unusual goodbye. Bless you Peter for being you.
Just before he died all the members of our group visited to pray around his hospice bed. He was wide awake and though his voice was weak he participated fully as we held hands. Everyone prayed for and with him. Several were friends of long standing whose personal prayers could not have been offered by anyone else. It was profoundly moving. His own prayer about his times being in the Lord's hands and his love for the Lord was profoundly moving too. Next day he slipped into unconsciousness and the day after, with a church friend close by, he went to glory. It was as though our group had shared in a benediction.
Yesterday, Carol and I went to his funeral. One of our group spoke about Peter's life and I learned fresh things about him and his service in the church and community. He also referred to his forthrightness and how these last months saw him mellowing. Our pastor then shared how Peter had instructed him on what to say! That everyone in the chapel needed to be challenged about God's love for them and that it is never too late to be accepted by Jesus. And then Peter had asked for a reading. I have never heard this in a funeral service! It was James 3:1-12 Taming the tongue. About the damage caused by a thoughtless tongue. At his funeral he wanted us to hear him repent about his unruly tongue in the hopes that he had apologized to all the people he had hurt. We all knew about Peter's tongue but what a way to confess and challenge us - all wrapped up in the assurance of God's forgiveness and love. It was a truly unusual goodbye. Bless you Peter for being you.
Sunday, March 15, 2020
When anxiety was great.....
Today's daily devotional reading, Psalm 94, (Encounter, Scripture Union) contains much lament about a world in which much is going wrong. It's full of questions: 'Why?, How long?' as the writer obviously struggles with doubts and pain. Accompanying bible notes rightly say how we must never forget the biblical tradition of lament because questions like 'Why?' are as authentic as Hallelujah! Celebration is not the whole story.
Today feels as though we are living in a season of lament. Already in several countries Covid 19 has brought death and destruction. With everyone else we wonder what will happen as the UK prepares for its spread. I suffered a major asthma bout yesterday and immediately Carol waved a red flag. Yes, it's passed but all this talk about being in the vulnerable age group with pre-existing health problems does raise anxiety. And some immediate hopes and plans have been dashed. We have just learned that plans to visit our family in the US (who we've not seen for a year) and other friends have to be postponed indefinitely. No more flights to the US. So many other hopes like going to church and meeting up with others are threatened.
In the psalm there are two wonderful verses (18.19):
Today feels as though we are living in a season of lament. Already in several countries Covid 19 has brought death and destruction. With everyone else we wonder what will happen as the UK prepares for its spread. I suffered a major asthma bout yesterday and immediately Carol waved a red flag. Yes, it's passed but all this talk about being in the vulnerable age group with pre-existing health problems does raise anxiety. And some immediate hopes and plans have been dashed. We have just learned that plans to visit our family in the US (who we've not seen for a year) and other friends have to be postponed indefinitely. No more flights to the US. So many other hopes like going to church and meeting up with others are threatened.
In the psalm there are two wonderful verses (18.19):
When I said, 'My foot is slipping,'
your love, O LORD, supported me.
When anxiety was great within me
your consolation brought joy to my soul.Carol and I repeated these verses to each other. 'How appropriate it is to hear this now,' said Carol. Yes, our good Lord remains true to us in his love and consolation through our laments.
Sunday, March 8, 2020
83 types of sleep disorder
I know I post about some odd incidents. Some of you may have endured an overnight stay in a sleep clinic. I experienced one this past week. My doctor thought my increased weariness is due to a sleep disorder and after tests I was admitted to the newly opened, classy, NHS Royal Papworth Hospital. On arriving each of us was given a hotel standard room with TV, Wifi, ensuite etc. The leaflet had illlustrated a patient with straps around his body and head - holding various electrodes while he slept peacefully.
Admitted at 6:30 pm, I was in my pyjamas by 8:00 with four attachments to my feet. Then at intervals other electrodes were fitted including nine to various places on my head, finishing with the gadget that would normally supply oxygen to the nose (but I guess was about my snoring). A battery pack was mounted around my chest with leads feeding into it from everywhere including an oxygen monitor on a finger. Each time staff were pleasant and cheerful and when I was finally trussed up one of them said I should take a picture. I wondered if I could possibly sleep with all this stuff on me. 'Oh, you will', they assured me.
They claimed the equipment would provide the most sophisticated analysis possible at the current time. They would also video me. One nurse told me there were over 83 different types of sleep disorder. Really?! To say I slept fitfully would be an understatement. The next morning I was unpacked, given porridge, I ordered my lunch sandwich and then waited for the results which a consultant would give me sometime in the afternoon.
On arrival he appeared to have limitless time to spend with me. He asked about my history and my assessment of my night's sleep. I burbled on that it had been a poor night because of the discomfort and I felt something of an imposter because so many others I know have poorer sleep. At last he spoke - apparently I had shown one of the worst nights recorded in the unit! He said that leg electrodes would always show movements and up to 15 times an hour was usual. However, in my deep sleep I reached levels of 112-115 per hour. No wonder sleep's not been restful. Of this I was blissfully unaware!
I now have the chart showing details of my disastrous night as well as a prescribed course of treatment. If it's not too personal I may share later if I get down from 115 movements!
Admitted at 6:30 pm, I was in my pyjamas by 8:00 with four attachments to my feet. Then at intervals other electrodes were fitted including nine to various places on my head, finishing with the gadget that would normally supply oxygen to the nose (but I guess was about my snoring). A battery pack was mounted around my chest with leads feeding into it from everywhere including an oxygen monitor on a finger. Each time staff were pleasant and cheerful and when I was finally trussed up one of them said I should take a picture. I wondered if I could possibly sleep with all this stuff on me. 'Oh, you will', they assured me.
They claimed the equipment would provide the most sophisticated analysis possible at the current time. They would also video me. One nurse told me there were over 83 different types of sleep disorder. Really?! To say I slept fitfully would be an understatement. The next morning I was unpacked, given porridge, I ordered my lunch sandwich and then waited for the results which a consultant would give me sometime in the afternoon.
On arrival he appeared to have limitless time to spend with me. He asked about my history and my assessment of my night's sleep. I burbled on that it had been a poor night because of the discomfort and I felt something of an imposter because so many others I know have poorer sleep. At last he spoke - apparently I had shown one of the worst nights recorded in the unit! He said that leg electrodes would always show movements and up to 15 times an hour was usual. However, in my deep sleep I reached levels of 112-115 per hour. No wonder sleep's not been restful. Of this I was blissfully unaware!
I now have the chart showing details of my disastrous night as well as a prescribed course of treatment. If it's not too personal I may share later if I get down from 115 movements!
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