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Sunday, 30 June 2013

March 2013: A Birthday Present to the MSA Trust

Thanks to the support and advice of the MSA Trust I had been able to arrange a visit from one of the Palliative Care Team from our local Hospice. This was my first step towards getting my head straight and finding a way to move forward as I tried to do all I could to help Suzie cope with this life-destroying illness. Anyone reading this who would like to know more about MSA or the way in which the MSA Trust helps please visit their website:
The visit from the Hospice Palliative Care Nurse was booked for Fri. March 1st, which was already a very significant day for us.... It was my 50th Birthday!
If I'd been asked 12 months ago how I would be celebrating my milestone birthday I can think of a few possibilities, but I think it's fair to say that meeting with a Hospice Palliative Care Nurse would probably not have been on the list. Suzie was well into her chemotherapy, struggling to cope with two rare and life changing illnesses, neither of us was getting much sleep, and my top priority was to be at home caring for Suzie.... so celebrating in any of the traditional ways just wasn't going to happen.
About a week earlier I'd been on the 'Just Giving' website to make a donation to the MSA Trust when the idea suddenly came to me.... I would dedicate my Special Birthday to raising money for this wonderful charity. If I could raise some funds for them and spread awareness of this illness I would feel that my birthday hadn't just passed by unnoticed. I set up a donations page and put a little 'plea' on Facebook, setting a target of £500 (a little concerned that I might be being a little bit over-ambitious). I needn't have worried. The donations came pouring in and by the time my birthday arrived my target had already been smashed, with more donations still coming in. I was delighted, overwhelmed, humbled and deeply moved by the level of generosity shown by so many people. Having thought that my special birthday was going to be a complete non-event I was just so thrilled to be able to do something to help other people who are going through the same nightmare that Suzie and I were facing. It made me feel like my 'Special Birthday' had turned out to be just about as special as it possibly could be.
If anyone reading this would like to help the MSA Trust to continue their most valuable work please do have a look at my page. It will give you information about the work of the trust and also the option to make a donation if you wish.
Thank you to everyone who made my birthday so worthwhile.

Saturday, 29 June 2013

Feb. 2013: MSA, Cancer, Chemo, Depression, Anxiety, Fear.... Help!!!!

Suzie's chemo started off ok and the treatment itself was less traumatic than we'd imagined. The staff were lovely and Suzie didn't feel anywhere near as dreadful, physically, as we feared she might. However, the worst effect was the significant deterioration of her MSA symptoms. Her mobility became much worse and her speech also deteriorated. She was unable to do anything much with her hands, and that was preventing her from doing so many of the things the rest of us take for granted. Of course, we couldn't be sure that it was the chemo causing this and we had to face the possibility that this might all simply be the MSA progressing. We had no way of knowing. MSA is rare enough on its own, but trying to find any evidence of anyone else who had MSA also having cancer and undergoing chemotherapy was pretty much impossible.
We just had to learn to accept the fact that everything we did was exhausting and took ten times longer than it used to, and try to adjust our expectations accordingly. By now Suzie needed help with every aspect of her personal care and there was very little that she could actually do at all without help from me. She couldn't go anywhere on her own, even just from one room to another or to wander round the garden; she couldn't do any of the activities or pastimes that she used to do; she was bored, depressed, frustrated, anxious and, most of the time, just plain terrified, and she was finding it so hard to come to terms with the reality of what her life had become. Many times every day she would suddenly start sobbing uncontrollably, grieving for the many aspects of her life that had now gone forever, and terrified of what was going to happen to her as the MSA progressed. She felt totally bereft, denied of all the things she used to enjoy and she felt utterly desolate as we desperately tried to find alternative pastimes to occupy her mind. Suzie was sinking into a big black hole of despair and despondency, and I was getting increasingly worried about her.
The day times were bad enough, but the nights were even worse. Night after night I would be awoken by the sound of her screaming and shouting out in her sleep. Every night I would go in to her again and again, and sit with her for ages trying to calm her down and reassure her. She was going through a living hell and I just didn't know what to do to make it better. We needed help!
There was plenty of help available and I had a folder full of leaflets, booklets, contact cards and telephone numbers.... Devon Carers, Macmillan, MSA Trust, Care Direct, Social Services, Rowcroft Hospice.... The list was overwhelming and I just didn't know where to start. Macmillan's had been suggested by the hospital, but they specialised in cancer patients, and actually Suzie's cancer was the least of our concerns. Most of their nurses would never have heard of MSA and I was getting so very weary of repeatedly explaining it to people. In any case, I'm not very good at making phone calls to people I don't know, so that would be yet one more stress for me to cope with. One evening when I was at my wits end and feeling totally helpless and bewildered by it all, I sent an email to the MSA Trust and just poured my heart out to them. Their response was amazing. I received an email back from them filled with genuine compassion and care, and also a vast amount of very helpful and practical advice. They were honest enough to tell me of the harsh realities of MSA, but followed that with a list of things I should put in place and told me which medical professionals I should get involved at each stage. It was like someone had got hold of all of my wild and chaotic thoughts and fears, and then had somehow drawn them together and organised them into an achievable plan of action. I can honestly say that email was the turning point for me in finding a way to move forward.

My first step was to get in touch with our local Hospice. Contrary to what most people think, Hospices aren't just about going somewhere to die. They offer extremely comprehensive Palliative Care plans that can do an amazing amount to improve the quality of life at home, for patients and their carers, throughout many years of illness. This seemed a good way forward for us because of the complex nature of Suzie's health issues. The Palliative Care team would not be 'illness specific' but rather would focus our situation as a whole and look at 'where' we were, not 'why' we were there. We arranged a visit from a Palliative Care Nurse for Friday 1st March, a day that already had particular significance for a completely different reason......
My next blog entry will explain why!!

Friday, 28 June 2013

Feb. 2013: All Systems Go!

I can honestly say that my diary has never been as full as it was during the first half of 2013. Every week seemed to have at least two or three appointments…. Physiotherapist, Occupational therapist, Hospital, blood tests etc. etc.
Then, in February, the chemo began. The general pattern that would emerge was that one week in every three would consist of a visit to the Hospital on the Monday to see the Oncologist, with another chest x-ray if necessary, blood tests on the Tuesday, chemo treatment on the Thursday and a quiet day for Suzie to get over it all on the Friday! As it turned out, these one-in-three 'busy' weeks were extended as time went on due to Sue's blood platelets not recovering sufficiently each time, but more about that in due course. The first of these weeks was even worse as we also had to have a 'pre-chemo preparation talk' with the specialist nurse before the first treatment was given. We were given a booklet full of information about all the risks and precautions associated with this type of chemotherapy. There was a long list of foods that Suzie shouldn't eat because of the risk of bacteria eg. soft cheese, pate, bio yogurt, cold meat, mayonnaise, soft boiled eggs, etc. The nurse, very helpfully(?) told me it was a bit like what I would have been told when I was pregnant…. Mmmm, actually, when I was having my kids, the most radical medical advice that had reached the ante-natal classes was that it might be a good idea to give up smoking!
We were told that there would be periods of time during the next 18 weeks when Suzie's immune system would be totally wiped out and if there was ever any sign of her having a raised temperature or infection I was to contact the Hospital immediately. I was given an 'Alert' card that I would need to show to the staff at A&E, if the situation arose, to warn them that Suzie was at high risk of 'Neutropenic sepsis' and needed IV antibiotics immediately. The leaflet we were given to go with it made rather alarming reading, especially as every page reminded us in bold type to 'Act QUICKLY because Neutropenic sepsis develops rapidly and can be fatal'. I have to say it all sounded pretty terrifying.
It was a difficult week with so much to take in and so many appointments to attend, not to mention all of the emotions that we were faced with as we embarked on this very scary and unknown journey. It was in the middle of coping with all this that I was dealt another personal blow, completely unrelated to Suzie's illness. One evening, right out of the blue, I received a totally unexpected phone call from my ex-husband's partner, which left me feeling absolutely shell-shocked. With my mind still reeling from the shock of what I'd just been told, I then had to contact my kids and break the news to them that their father had passed away the previous day. I don't know how I thought I was supposed to feel in this situation, but I was certainly not prepared for the range of confusing and conflicting emotions that engulfed me that evening.
I think it's fair to say that we were all beginning to wonder where this year was taking us. We had faced more heartache and trauma in those past few weeks than we could ever have imagined. Through the pain and the tears we clung on desperately to all of the good things we could still find in our life and we tried to focus on them. We still had each other, a loving family and many dear friends. We were blessed to live in a most beautiful part of the world and there was so much of God's wonderful creation all around us. We really did still have a lot to be thankful for. The following photos offer a glimpse of various facets of our life.
A Breath of Sea Air

Our Beautiful Scenery

Notice Millie in the back of the car!
A handy bit of Dartmoor Granite for Suzie to sit on.

Back at the Hospital....

Mmmm. I must remember that in future!!
When I 'Parked' Suzie here I hadn't read the sign on the wall....

Thursday, 27 June 2013

January 24th 2013: Diagnosis Number 2 - MSA.... Multiple System Atrophy

By the 3rd week of the new year we felt like we'd already spent most of it at the hospital and that we'd been hit with as much medical mayhem as was humanly possible in that space of time. On that Thursday morning when we went to meet the Senior Neurologist who had been following up Suzie's case (before the more recent breathing crisis had arisen) we really weren't expecting anything new to be thrown into the equation. The Neurologist had studied all of the tests results that Suzie's notes had accumulated during the previous 12 months. She asked us numerous questions and carefully observed Suzie attempting to carry out the various tasks and manoeuvres that were asked of her. After her thorough examination of Suzie she uttered those three words that, from that moment on, would come to dominate every part of our lives - Multiple System Atrophy......
I'd heard of this illness some months previously and I remember looking it up on Google. After reading all about the symptoms and prognosis I'd very quickly decided that this was NOT what I wanted Suzie's illness to be. I found a couple of symptoms that didn't fit with Suzie's and very quickly put it to the back of my mind. I'd thought that maybe I should mention it to the Neurologist when we next saw her but, with all the trauma of Suzie's recent hospital admission and the subsequent cancer diagnosis, it had gone out of my mind. Suddenly I was hearing these words again, only this time they were being used in the context of a fairly confident diagnosis. I can't begin to describe the impact they had on me. I hadn't shared my concerns with Suzie when I'd first looked up MSA so she was hearing about this disease for the first time and didn't know what to make of it.
It was explained to us that MSA is a rare degenerative neurological disease caused by progressive loss of cell function in the brain and it produces a variety of motor function failures. It causes symptoms similar to Parkinson's Disease but it's much more rapidly progressive and usually unresponsive to treatment.
It seemed that there was absolutely no connection between this illness and the recently diagnosed Primary Peritoneal Cancer. We felt like we'd been dealt a double blow. Suzie had been diagnosed with not one but two totally unrelated yet life changing and life limiting diseases - and both in the space of 3 days.
Throughout an agonising 12 months of not knowing why Suzie was becoming so poorly we had been constantly praying for answers and for clarity.... and those prayers had now been answered. The answers weren't what we'd wanted, and the clarity only served to confirm that Suzie's symptoms weren't going to get better. We felt utterly downcast, deflated and downright scared. What was our future going to look like? How were we going to get through this?
It's times like this that I don't know how I would cope without my faith in a loving and gracious God. He had allowed this to happen. We didn't know why, but we didn't need to. All we needed to know was that He had planned it all for a purpose and that He would be with us through it all. This we believed.
That gave us immense strength, but it didn't take away the fact that we were still ordinary people with normal feelings. Throughout the coming months we would experience tears and fears, raw and painful emotions and utter desolation and devastation on a scale we would never have thought possible.

Wednesday, 26 June 2013

January 2013: Diagnosis Confirmed

The last few weeks of 2012 had taken us on a roller coaster ride, with new medical issues seeming to come at us from all angles. Only 48 hours into 2013 we had a phone call from the hospital asking us to come in the next day to talk with the Respiratory Consultant who had been studying the results of the fluid drained from Suzie's chest. On our arrival Suzie was immediately taken for a chest x-ray and then we waited for the consultant to see the results. We were led into his room where he showed us the x-ray and pointed out where it clearly showed an amount of fluid already accumulating again in Suzie's chest. He then, very gently, explained that the cells found within the drained fluid had been confirmed as secondary cancer cells and that they indicated an advanced stage of cancer that was extensive and incurable. More tests and scans were needed to identify the primary source of the cancer and it still wasn't known if any of this had any connection at all with Suzie's on-going neurological issues. Whilst deemed extremely unlikely, we were told that there was a very slight possibility that the presence of cancer cells in the body could, in some cases, cause neurological symptoms similar to those Sue was encountering. We were already due to see the Senior Neurologist a few days later but we were warned that, even if the neurological symptoms were found to have been caused by the cancer, the possibility of them being reversed was unlikely. If, on the other hand, they were being caused by a totally unrelated illness then we were no further forward than we had been 12 months earlier.
That last paragraph doesn't even come close to expressing the depth of emotion that Suzie and I found ourselves facing that day. We were both devastated to realise that our future together could be so limited. Suzie was especially struggling to cope with the fear and anxiety of acknowledging just how ill she was, and she was terrified of what the coming weeks and months might hold. All I could do was to hold her, cry with her, and reassure her that I would be beside her every step of the way, no matter what we had to face.
More scans and blood tests etc. went ahead a few days later and we then met with the Gynaecologist who had assessed the results. He diagnosed Stage 4 Primary Peritoneal Cancer. When we got home I looked up the definition of this on various websites and I have to say that, on each one, my eye was immediately drawn to the word 'rare'.... That was my Suzie for you! She couldn't have something 'normal' like other people. No, she had to be different!
We met with the Gynaecologist who explained that there was no evidence of any single 'mass' of cancer, therefore surgery wasn't an option. (This was an answer to one of Sue's prayers!) Instead, the Consultant and his team recommended six three-week cycles of IV Chemotherapy. We were assigned a specialist Oncology Nurse who would act as our first point of contact if we had any concerns, and we found her to be very kind and helpful. She acknowledged the seriousness of Suzie's illness and confirmed that it would never be 'cured', but she said that, with successful treatment, it may be possible to control it for a significant amount of time. This was what I'd been desperately longing to hear.
We rounded off the day by taking a detour and visiting the Hospital Chapel after our consultations had finished, and we spent a very special, though rather emotional time there thanking God that we had, at last, been given a diagnosis of something specific that could potentially respond well to the right treatment, and asking for His strength to deal with the weeks ahead.
In the last few weeks and months we had certainly learnt a great deal about the value of love and dear friends. We had also learnt a lot about the fragility of our human life on this earth… and Suzie and I were certainly learning to value every precious moment that we could spend together. We must cherish each day as a gift from God and strive to make the best we can of every single moment.

Monday, 24 June 2013

2012 ends with the First Hint of a Diagnosis

We'd spent the whole of 2012 longing for a diagnosis that would explain Suzie's ever increasing mobility problems and, one by one, various illnesses had been ruled out. Suzie's recent breathing crisis had now been dealt with and we had our minds focused on getting some degree of normality back into our lives. We'd had our house fitted with various pieces of equipment that would allow me to care for Suzie at home, we would receive on going care from our physio and occupational therapists and, God willing, she would be discharged imminently.
In view of all this positive activity and optimism it came as a huge blow when the doctor came to see us with his bombshell. They'd had a report back from the main hospital with the results of the analysis of the fluid that was drained from Suzie's chest. It appeared that it had shown up some 'suspicious cells' that were being identified as secondary cancer cells. The primary source of the problem was thought to be in the gynaecological area, but more scans and tests would be needed to identify the exact location.
Suddenly we felt numb and bewildered, our hearts torn apart and our minds buzzing with far more questions than anyone could give us answers to. With the New Year holiday upon us it would be the next week before we would have contact with the consultant who would be able to tell us the full implications of this latest revelation. Until then we were left believing that Suzie has some form of cancer, but we didn't know exactly where; we didn't know how this had caused the build up of fluid in her chest for which she was originally admitted to hospital, if indeed it did; we didn't know what connection, if any, there was between this and her on-going symptoms.... There were so many questions and so much we wanted and needed to know.
We could only hold fast to the one thing that we did know for sure.... that, for some reason, God had allowed this to happen and that He would surely guide us through whatever the coming days and months (and, hopefully, years) would bring. We would just take one day at a time. Suzie was coming home, and that was cause for celebration. We would continue, as ever, to be very grateful for the love and prayers that were upholding us as we faced the New Year with an immense sense of uncertainty.

Sunday, 23 June 2013

2012: A Different Kind of Christmas

Suzie soon settled into her new surroundings and was much more relaxed and comfortable. She was weak and tired but was now under the care of Physio Charlotte who was helping her to increase her strength and mobility. This was the same physiotherapist who had been treating Suzie at home, so she was familiar with Sue's ongoing difficulties and could set realistic progress goals based on an informed judgement of Sue's abilities.
It soon became clear that we had a long and difficult road ahead of us, and that there were adaptations and equipment that would be needed before Suzie would be able to come home. Christmas in hospital was inevitable. By then my son and daughter had arrived, and knowing that they were in control of everything that was required for our family Christmas was an immense blessing for me.
Suzie's Christmas began with Holy Communion at her bedside on Christmas Eve followed by the arrival of Carol Singers on the ward and a visit from our Vicar. Members of the hospital's 'League of Friends' brought gifts and we were also given a most delightful Nativity ornament by two dear friends, which was a most perfect gift for Suzie's current setting.
After settling Suzie down to sleep for the night I then had the added blessing of being able to attend Midnight Mass with my family, including both my kids, which was a very special time for me.
Christmas Day worked out very well as it turned out. I was able to spend the morning with Suzie while my kids cooked the lunch for our family and then they were able to visit her in the afternoon. After another couple of hours with her later I came home and had some quality time with my wonderful family. Various other friends made time to visit Suzie at other points during the day so, all in all, we had a lot to be thankful for. We'd had a reasonably 'Merry Christmas'.... Would it be a 'Happy New Year'? Only time would tell.

A reminder of the truth of Christmas

Suzie, getting into the Christmas Spirit

A visit from the Vicar, suitably attired in his Christmas hat!

Saturday, 22 June 2013

Dec. 19th 2012: Home for Christmas??

The days leading up to Christmas were chaotic, but not in the way most people would experience. For a few days I was travelling back and forth to the hospital (a 16 mile round trip) and spending every moment possible with Suzie. When I wasn't at the hospital I was at home trying to keep up with all the emails, phone calls and texts, from her many friends who were concerned about her.
On the medical side, Suzie's chest drain took three days to drain off more than 10 pints (6 litres) of fluid. I couldn't begin to grasp how such a huge amount of fluid could even fit into her chest. I tried to imagine holding a 3 litre box of wine in each arm.... It's no wonder poor Suzie couldn't breathe. I recalled, with horror and an immense sense of guilt, the hours I'd so often spent with her in the middle of the night, trying to reassure her, and encouraging her to lie down and try to relax, whilst Suzie had been panicking and saying she couldn't breathe if she laid down. How could we all have failed to realise the seriousness and significance of this problem sooner?
The cause of the 'pleural effusion' was not yet known, but tests on the fluid may reveal more clues. It was still considered very unlikely that this latest illness had any link with her ongoing deterioration but the doctor in charge was going to investigate all possibilities. However, with the chest drain now removed and the fluid cleared Suzie was ready to be discharged from the Respiratory Ward, but she was certainly not well enough to come home. Her mobility had been bad enough even before this recent crisis, and after all the trauma she'd been through, not to mention having spent four days barely getting out of bed, she was weaker than ever. She was going to need a lot of extra care and intensive physiotherapy to build up her strength again.
Our little local hospital would be the ideal place for Suzie's recuperation, but beds there are like gold dust and we were told that it was most unlikely that she would be able to go there. However miracles do happen... Interestingly, at our Church's mid-week Holy Communion service, prayers were offered specifically for Suzie, and it was immediately after this that I received a call from the hospital to say that a bed had unexpectedly become available and that Suzie would be transferred there later that day!! God is so good.
When I went in to see her that evening she looked so relieved and relaxed. She had been greeted and taken to the ward by a nurse who was also a dear friend of ours, and then had immediately been visited by the lovely physiotherapist who had already been treating her for months. She was in familiar surroundings amongst people she knew. Although she wasn't quite home we both felt she was so much closer. That evening we watched television together, had our evening coffee together, and I was able to settle her down for the night and say our bedtime prayers together, before going home, just up the road. We felt like a glimmer of hope had lit up like a Christmas star.

Thursday, 20 June 2013

Dec. 16th 2012: Sunday - The Day of Rest??

If I had to describe that particular Sunday there would certainly be no reference to a 'Day of rest'. The day was, in fact, a blur of activity.... paramedics, doctors, oxygen cylinders, nurses, needles, x-rays, CT scans, ultrasound scans etc. not to mention the marathon of going all over the hospital from one department to the next. In the times between each of these activities, while we were waiting for the doctor to return or the next test to be done, I was busily sending texts to a few close friends and family, keeping them informed, whilst frantically trying to respond to other texts and missed calls from various other friends who had heard the news about Suzie. It wasn't until about 4 o'clock in the afternoon that it suddenly occurred to me that neither of us had eaten anything since tea time the previous day! As soon as it had been ascertained that Suzie wouldn't be needing to have any treatment that would require a general anaesthetic the staff brought us some sandwiches, not that either of us actually 'felt' hungry, but I'd realised by then that the day still had a long way to go, and common sense dictated that I really ought to eat something.
Suzie's tests had revealed exactly what the 'out of hours' doctor had suspected. A substantial build up of fluid in her chest cavity was compressing her lungs, one of which wasn't functioning at all. It took 45 minutes for a chest drain to be inserted and we were told that it might take a few hours for the fluid to drain away completely. Even the experts couldn't have realised just how serious the situation was…. The drain had only been in 15 minutes when I happened to notice that the 2 litre container the fluid was draining into was full and in danger of overflowing! I alerted the nurse who immediately stopped the drain and called for assistance. It seemed there was significantly more fluid than anyone had thought. They told us that Suzie's lungs were in danger of collapsing and that this process was going to need to be done very slowly over a far longer period than they had anticipated. Another x-ray was required, after which Suzie was finally admitted to the ward and settled into bed, exhausted, but already feeling some degree of improvement in her breathing.
Tests over the coming days would provide some clues regarding what had caused this fluid to build up and whether it had any sinister implications. Ironically, it seemed that this latest situation had absolutely no connection at all with her underlying (and, as yet, undiagnosed) condition.
It was 10pm when I finally had to leave her and come home. Saying 'goodnight' and walking away was heartbreaking, but I was just so thankful to God that Suzie was in safe hands and getting the medical care she needed. We had no idea what the future had in store for us but we knew that we were surrounded by the love and heartfelt prayers of many dear friends and family. That was a blessing for which we were immensely grateful.

Dec. 15th 2012: A Night to Remember

There are some nights in our lives that we will remember forever…. and the night of Saturday 15th December 2012 is certainly one of them as far as I'm concerned. I spent the whole night with Suzie, lying beside her trying to reassure her, helping her to sit up when she really felt she couldn't breathe if she laid down, helping her to lay down when she was too weary to sit up any longer, or just sitting up myself watching her during the fleeting times when she managed, albeit briefly, to fall asleep. Throughout the whole night I agonised over the question of 'at what point does this constitute an emergency?' Her breathing problems had been going on for weeks, during which time she'd been seen by two different Doctors and her Consultant. After the recent television advertising campaign intended to stop people wasting the time of the emergency services I was so afraid to call them out, only to find that Sue was just having a bit of an anxiety attack. On the other hand, if there was something seriously wrong I would never forgive myself if I didn't act appropriately or soon enough. I can honestly say that it was the most dreadful night of my life. While Suzie lay sleeping I watched, listened to and analysed every breath she took. 
As the first glimpse of Sunday morning gradually began to dawn, so, too, began to dawn our realisation of just how serious this situation might be. As my concern for Suzie increased, and as soon as it felt like an appropriate hour to do so, I phoned the 'Out of Hours' doctor to ask for his advice. With hindsight I realise it was a phone call I should have made hours earlier, and the guilt of that was something I would have to live with. Within half an hour Dr. K. arrived and examined Suzie, paying particular attention to her chest and her breathing. Within minutes he was asking me for the phone and calling for an ambulance.
As he left I was able to speak to him out of Suzie's earshot and ask him the question that I'd been struggling with all night…. 'Is this serious?' With my concern for her ever deepening I ventured a step further and, barely able to actually articulate the words, I hesitantly asked........ 'She is going to get through this, isn't she??'........ Dr. K. looked at me with eyes that exuded compassion and concern in equal measure and told me, very gently, but truthfully, that if Suzie was one of his own loved ones, he would be extremely worried. Her condition was indeed very serious and potentially life-threatening.
While we waited for the ambulance to arrive every minute seemed to last for ever. During that time we came face to face with emotions we didn't even know existed. We cried, we prayed, and we just held each other, so afraid of what was going to happen next, but somehow relieved that, at last, something was.

Wednesday, 19 June 2013

Dec. 2012: Symptoms, Side Effects, or Something Sinister?

By the beginning of December Suzie was a couple of weeks into her trial of Sinemet (the Parkinson's medication) and, I have to say, those two weeks had been pretty horrendous. She had already been suffering from increasing anxiety, which was hardly surprising considering her unexplained incapacity and the continued uncertainty about its cause or prognosis. However, anxiety is also one of the common side effects of the Sinemet, so it could be that this drug was responsible for the most dreadful panic attacks that Suzie was having, especially at night. Some nights I'd sit beside her bed, stroking her head and gently reciting Psalms until she fell asleep, because she couldn't settle on her own. She would frequently wake up during the night in a sudden state of terror, convinced that she couldn't breathe, and terrified to go back to sleep for fear that she would stop breathing in her sleep or that she would wake up paralysed.
Suzie's breathing was getting worse but, in view of the fact that every movement she made took a huge amount of effort, it didn't seem entirely surprising that she was frequently getting out of breath. It was also another possible side effect of the Sinemet so was this the reason? Or was it yet another manifestation of her mystery illness, or even a symptom of something else?
So........ Suzie was frequently getting out of breath, which was exacerbating the severe anxiety and panic she already felt; and the panic attacks were making her feel unable to breathe, which was making her panic even more; and I was trying desperately to discern how much of all this was caused by a physical symptom and how much was her panic response to it, and, most of all, what could I do to alleviate these dreadful and terrifying symptoms. Another visit to the Doctor's seemed the only sensible option so we made an appointment.
Dr. C. was very thorough, but numerous blood tests, heart and lung function tests, ECG, physical examinations etc. all failed to identify anything physically wrong with Suzie's heart or lungs. A chest x-ray was arranged and a Ventolin inhaler and breathing mask were prescribed, but they didn't help at all. 
An appointment had already been arranged for January 24th 2013 with the senior Neurologist at the hospital. We just needed to hang on in there and get through one day at a time until then.
Amidst all this trauma we continued to be amazed by the way in which God continued to uphold us throughout it all. Many 'spontaneous blessings' served to shed a glimmer of light into a dark day..... A drive out in the country during a bit of unexpected winter sunshine; a friend who 'just happens' to pop in for a cup of coffee right at the time when I really need to go out and get some shopping but Sue doesn't want to be left alone; An encouraging Bible verse that just seems to appear out of nowhere, but says exactly what we need to hear at that very time. Not least, after over 20 years of being responsible for cooking Christmas Dinner for my family, I was told that, this year, I was having a day off! My daughter insisted that I was to have no responsibility for anything other than making sure my wine glass was kept topped up!! She and my son would plan, prepare and cook dinner (for all 10 of us!!) and it was going be such a blessing for me to be able to spend Christmas Day free to focus my whole attention on making sure Suzie was comfortable, happy and well cared for.
In the event, their provision of our Christmas catering proved to be even more of a blessing than I could ever have imagined because, in the days leading up to Christmas, Suzie's illness took us to a dramatic new depth of concern.

Sunday, 16 June 2013

Nov. 2012: Back to the Neurologist....

With the cause of Suzie's illness still a complete mystery we prepared ourselves for our forthcoming consultation with the Neurologist, armed with a written list of Suzie's ever-increasing symptoms:
          Fingers and hands stiff and numb; cannot write;
          Poor co-ordination and manual dexterity; hands & feet always cold;
          She has to 'instruct' her legs to make them move; her feet get 'stuck';
          Legs shake when trying to move them;
          Speech slurred and can't get words out; too much saliva;
          Reduced facial expression;
          Poor spatial awareness;
          Every task is a huge effort and done very slowly.
More recent symptoms included:
          Shallow breathing, wheezy and persistent cough;
          Breathlessness with even minor exertion;
(With the benefit of hindsight we now realise that the breathing problems were unrelated to the other symptoms, but we didn't know that at the time.)
The Neurologist admitted that he had run out of ideas, although he could clearly see that Sue's condition had deteriorated significantly. He still regarded Parkinson's disease as 'extremely unlikely', but in the absence of any other diagnosis he considered it worth starting a month's trial of Sinemet (a combination medication of Carbidopa and Levodopa used for the treatment of Parkinson's disease). We were to keep a record of her symptoms and note any changes. He also suggested that Sue should be referred to one of his senior colleagues for a second opinion. We readily agreed to this, despite being told that it probably wouldn't be until well into the new year. We were just glad to feel we were actually 'doing' something at last because, by this time, we were becoming so despondent and disheartened by the unrelenting 'not knowing'.
Would anyone ever be able to find the cause of Suzie's illness? We were convinced that she must have some unknown disease that hadn't yet been discovered. We even began to consider the possibility that her symptoms would end up being investigated by medical research scientists and eventually lead to the discovery of a completely new disease. With a rather feeble attempt at humour we suggested to our friends that, in years to come, people all over the world would find themselves being diagnosed with 'Suzie Syndrome'!!

Saturday, 15 June 2013

October 2012: So Now We Know What it ISN'T!!

Our Doctor had asked the Neurologist to arrange for 'more thorough tests' to be carried out, and she certainly got her wish! We spent the remainder of 2012 becoming increasingly familiar with the various departments of hospitals near and far, and discovering medical procedures we could never have imagined. Within six months Suzie had undergone two MRI scans, a Vestibular assessment, CT scan, Lumbar puncture, nerve conduction studies, blood tests, cognitive and speech assessments.... not to mention various consultations and numerous home visits from different medical therapists.
The Cognitive assessment gave us a bit of light relief and provided some degree of amusement. It consisted of a number of questions and tasks to assess Sue's memory, mental functions and other cognitive skills. (I sat quietly watching and listening, getting increasingly alarmed by how much of the test I was actually struggling with myself!!) Sue performed quite well until it came to the memory section when she was asked for the name of the Prime Minister…. She'd been practising this all week because she knew it was bound to be one of the questions, but, when the time came, she just couldn't bring his name to mind. She'd got the names of the U.S. President and the latest 'James Bond' actor straight away, but the best she could come up with for our own Prime Minister was Harold Macmillan!! She tried to convince us afterwards that saying the wrong name was a political statement and not a lapse of memory!!
Seriously though, the results of the cognitive assessment were fine, as were the results of all the other tests and investigations. The medical professionals had done a marvellous job of telling us what Suzie's illness isn't!! They had ruled out Multiple Sclerosis, Motor Neurone Disease, Brain tumours, spinal tumours, strokes, mini strokes and a whole host of other illnesses that we'd never even heard of…. and the Neurologist was still adamant it wasn't Parkinson's disease, despite the similarity of symptoms and contrary to the opinions of other medics.
Suzie's mobility was continuing to deteriorate and yet it was now a year since her first symptoms had emerged and we were still no closer to getting a conclusive diagnosis. We were frustrated and dismayed, but we continued to take one day at a time, very grateful for the love and prayers of our friends and family, and holding fast to our Christian faith in a loving God who was sustaining us through this difficult journey. Whatever difficulties we may face, we knew that we still had a huge amount to thank God for every day.... not least the beauty of the world where we live, as illustrated in the following photos.



Friday, 14 June 2013

April-May 2012: Results or Red Herrings??

Result?? Suzie's MRI scan revealed degeneration of the spine - progressive but not malignant or life-threatening. She was referred to the specialist Spinal Unit and we waited to hear from them for a consultation to explore the possible treatment options and the long term prognosis. Eventually we received a letter from Sue's Consultant telling us that the Spinal team agreed Sue's MRI scan showed 'age related changes' to the spine and that surgery wasn't an option. Diagnosis achieved; no further action required; Consultant's job done!! 
Ok? Well, actually, No! We weren't convinced.
At my insistence a CT scan was carried out, but this just served to reveal a further 'red herring' of cerebrovascular damage and ischemia, but again, not enough to explain all of Sue's symptoms or the rapid progression of them.
We suddenly felt like we were back to square one, with more questions than answers, the most disturbing one being 'Are they missing something?' If this was purely 'age related changes' why had she deteriorated so rapidly? Less than a year earlier she'd been playing badminton twice a week, walking normally and leading a full and active life. Now she could barely get out of a chair without help, she couldn't walk properly, write legibly, talk clearly or do many of her previously regular activities. She'd had a few falls by then and was also showing signs of 'vagueness' and loss of facial expression. All of this in the space of 12 months seemed a far cry from the gradual onset of 'old age' that I'd seen in others. Was I right to be concerned that there was something more to this than the normal ageing process? - Not that I could really get to grips with even thinking of Suzie in those terms!! I was certainly not ready to just sit back and let everything be attributed to 'her age'.
It was with immense shame and guilt at this point that I acknowledged that I had probably been the last person to notice how significantly Suzie had changed. Her symptoms had appeared and worsened so subtly that, being with her all day every day, I'd simply evolved with them, gradually helping her more and more with the basic tasks of day to day living and taking over many of the household tasks that she'd begun to find too difficult. It was only when other people started commenting on their own observations of her that it really hit me how very much she had deteriorated.
It took another visit to our GP to push the investigations on to the next stage. Like me, she also felt that the cause of Sue's symptoms went beyond age related spinal problems and she immediately wrote back to the consultant expressing her concerns and asking for more thorough tests to be done as a matter of urgency. She arranged for a comprehensive range of blood tests to be carried out and asked for the MRI scan of Sue's brain (which had previously been deemed unnecessary) to be rescheduled.
The journey of medical discovery was now well underway and would very soon lead us to full enlightenment, treatment and cure…… wouldn't it????  

Thursday, 13 June 2013

2012: The Waiting Game

"The time has come," the walrus said, "to talk of many things"......
(Ignore that quote if you're under about 50 years old!!)
The time had indeed come for us to start talking about the many aspects of Suzie's health that were giving us increasing cause for concern, and our first step was a visit to our own GP on February 8th 2012.
      Suzie's main presenting symptoms were:
            Slowness and stiffness of movement when walking;
            Inability to write properly;
            Co-ordination and manual dexterity difficulties;
            'Vague' or 'blank' facial expression.
Suzie was referred to a Consultant Neurologist whom we met on 12th March. The consultation went pretty much as predicted in that no diagnosis could be made without an MRI scan..... or, in Sue's case, two MRI scans - one of her entire spine and one of her head. For a long time I had thought that her symptoms were consistent with Parkinson's disease but the Neurologist was convinced that this was NOT the case. He thought that Multiple Sclerosis or spinal tumours were more likely.
The appointment for the first MRI scan was scheduled for three weeks later and Sue was dreading it. As a severe claustrophobic she was terrified of going into the scanning 'tunnel', but the staff were very kind and understanding. They gently explained everything they were going to do, constantly reassured her and were happy to wait at each stage until she felt able to proceed. I was allowed to stay with her and throughout the whole 40 minutes she was inside the scanner I was squeezing her feet for reassurance!! Suzie just closed her eyes throughout and sang hymns in her head!
When this scan was over we began what was to become an all too familiar pattern throughout the rest of the year.... WAITING! We went home expecting to wait a couple of weeks and then be called back to be told what was wrong and how they could fix it! Mmmm.... That wasn't quite how it turned out.

Wednesday, 12 June 2013

2011: The Early Signs

Throughout most of 2011 Suzie was a happy, healthy, vivacious and extremely active 'young at heart' 70 year-old. Every morning she would go out for a walk with our three dogs and me, she played badminton twice a week, and spent the rest of her time 'flitting around' pursuing her numerous other hobbies, activities and interests. She was always 'doing' something.... gardening, painting, organising Charity shows, singing in the Church Choir, socialising, acting, miniature model making, voluntary work, Art class, Writing class.... the list is endless. Although I'm 20 years her junior I had difficulty keeping up with her!!
Looking back, it was towards the end of 2011 that signs began to emerge suggesting something wasn't quite right. One of the first things I noticed was that Sue had started 'scuffing her feet' when we were out walking. She put it down to a bit of arthritis making her stiff. Over time her walking became slower and more of an effort, our walks became shorter and, eventually, Sue resorted to using a walking stick.
Around this time Sue had also noticed that her handwriting had become tiny and illegible, and her co-ordination was becoming a bit of a problem, with tasks such as fastening buttons and tying laces becoming increasingly difficult for her. 
At times I felt she wasn't quite 'on the ball' and she was losing her sense of spatial awareness. In a nutshell, she had lost her 'sparkle'.
When you live with someone and spend most of each day together, an insidious deterioration of health can emerge so subtly that it is not easily noticeable at first. It was so easy to attribute Sue's gradual 'slowing down' and decreasing mobility to the inevitable effects of age. For a long time we just accepted that Sue wasn't as young as she used to be and we tried to adapt accordingly.
With the benefit of hindsight we can now see how very wrong we were.

Meanwhile.... Here's a glimpse of life before MSA

Suzie the Actress

Suzie the Artist

Suzie the Framed Miniature Creator
Suzie the Dog Lover

Suzie, the Lover of Fun and Laughter
Suzie the Food Lover


Tuesday, 11 June 2013

Where do I begin??

This is the first time I have written a blog, and I am doing so now because I really believe there are people out there who might find comfort or encouragement if I share our experience in this way. MSA is such an 'unknown quantity' to most people and I have gained a great deal of insight and information from reading other people's stories. Facing this illness is a daunting and frightening experience and so I would like to reach out to other people who are facing a similar journey. You're not alone.
Our journey with Sue's health problems began about two years ago. Over the next few weeks I will endeavour to post entries based on my memories of how it all began, in addition to excerpts from my own personal journal and from emails I have sent to friends relating to Sue's illness. When I'm up to date I will continue to add new posts as and when significant or interesting events arise. If you are reading this blog whilst it is in its early stages please do bookmark it and revisit it periodically as I continue to add more information.