Karen’s Story

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Karen’s Story 2017-06-05T10:09:36+00:00
  • Karen’s Story – Chapter 1

    December 2013
    December 2013 I decided to start my story here, as this is when I noticed my first symptoms. However, really I think it all began much earlier. In the preceding few years, I went through a number of stressful life events including my husband losing his job at the same time as moving to a more […]
  • Karen’s Story – Chapter 2

    February 2014 Symptoms were about the same, so back to the GP I went. This time I saw someone different. We talked about arthritis and she arranged for some blood tests, which all came back normal. She advised me to take anti-inflammatories, which I did, and to come back in another month. I started to notice […]
  • Karen’s Story – Chapter 3

    March 2014 Following a short period when I thought my hands had returned to normal, the left hand deteriorated again, and was now twitching, too. So back to the GP I went, another one, who again scratched her head, asked me what I thought, and referred me to a physiotherapist and an orthopaedic consultant. The physio […]
  • Karen’s Story – Chapter 4

    April 2014 Great news: my clever husband has got a job… in Mauritius, of all places. Not a difficult decision whether to go or not, given our financial situation, and the thought of the life we could lead there. The job was for a year initially, which we anticipated being extended, and we planned to stay […]
  • Karen’s Story – Chapter 5

    June 2014 We were met at the airport on our arrival and shown to the VIP lounge by the secretary to the prime minister. Our luggage was whisked away. I remember how hot it was. The four of us were taken in two separate cars to our new apartment. We felt like royalty! There were sugar […]
  • Karen’s Story – Chapter 6

    July 2014 I had started to relax a little, as I thought it would all finally be sorted out. But I couldn’t resist Googling my symptoms, and it became an obsession with me to try to find alternative diagnoses for the problem with my hand. I monitored it daily and took loads of photos to monitor […]
  • Karen’s Story – Chapter 7

    August 2014 The kids had a whole month off school! We spent our first weekend in a five-star all-inclusive hotel on the island for our 18th wedding anniversary. It was fabulous and the kids loved it. It was in the tourist area, but out of season it was very quiet. I was still finding my way […]
  • Karen’s Story – Chapter 8

    September/October 2014 No changes health wise; my hand was just the same. An appointment had been set up for October for me to see the orthopaedic consultant at Walton with a view to setting up a date at Christmas for an operation. So I set off home on my own as at that time I had […]
  • Karen’s Story – Chapter 9

    December 2014 Christmas. Two and a half weeks at home in the UK. This time, the whole family came back with me, so with Andy on board I had his support when visiting the consultant for my next appointment. I actually felt at that time that my condition had got a little better and was still […]
  • Karen’s Story – Chapter 10

    New Year 2015 Mauritius. Party time! Champagne at midnight in the swimming pool with the kids and all our friends. Everything felt bittersweet though – “Will I make it to next Christmas? Don’t buy me any presents because I’m going to die soon.” Mauritius had changed for me now. I was torn between staying and the […]
  • Karen’s Story – Chapter 11

    February 2015 I started to be able to tell that things weren’t right with my right hand, too. When I was writing, unscrewing bottle tops, etc. it had begun to be noticeable that the function was deteriorating. I told Helen and Andy about my fears. At the same time, my left leg was beginning to become […]
  • Karen’s Story – Chapter 12

    March 2015 Andy would always have described me as being clumsy, but now I was definitely falling over more. Things were different. I felt that my right hand and left leg had started to deteriorate at the same time. It seemed unusual so I reverted back to making symptom lists and Googling ‘the reasons it is […]
  • Karen’s Story – Chapter 13

    April 2015 We’re coming home. I was relieved but it was very annoying for Andy. He was so worried about our financial state and getting another job. We had just begun to get on top of things and get rid of our debts. Things were okay financially for the first time in ages. Packing up was […]
  • Karen’s Story – Chapter 14

    4 June 2015 We left Mauritius. All the packing was done and the shipping sent on ahead. We set off to Madagascar for a 10-day holiday with two suitcases. It was fantastic, and so different to anywhere I had been before. It was very poor, very African. The city was awful, with kids begging everywhere. The […]
  • Karen’s Story – Chapter 15

    5 July 2015 We moved back into our own house. The tenants had left it dirty and the garden was completely overgrown and was a nightmare. We then went on to have loads of hassle with the tenants trying to reclaim monies owed on damages. In the end, we gave up. It was too stressful. I […]
  • Karen’s Story – Chapter 16

    September 2015 Another consultant appointment. The professor wanted me to have the nerve conduction tests again. She was aware of my fears and suggested I took some sedation. The tests results weren’t actually as bad as the previous ones. I had Helen in my ears the whole way through as I listened to her CDs and […]
  • Karen’s Story – Chapter 17

    October 2015 It was at this time that the consultant sent my GP an official letter confirming the diagnosis, as tests had highlighted motor nerve damage in my tongue, and it was starting to twitch. This seemed to give her the final medical signpost she needed to diagnose this difficult disease officially. I had MND. They […]
  • Karen’s Story – Chapter 18

    January 2016 I started a trial on a drug called Levosimendan. The trial was due to last six months. I was really excited. Here was hope again that I would be cured or at the very least have the progression of the disease slowed down. The trial is due to last for six months.
  • Karen’s Story – Chapter 19

    February 2016 I have started going as a day patient to St Luke’s Hospice. It’s a good and bad experience for me. The people are amazing, the nurses and alternative therapists. The service they offer is fantastic. I’ve had massages, reflexology, reiki and counselling. I’ve also had practical help from their benefits advisor and social worker, […]
  • Karen’s Story – Chapter 20

    March 2016 I’m excited to be doing this work with Helen. My kids will have something to read when they’re older and they will understand what was going on inside my head. If I cry, they say, “Why are you crying?” To me, it should be obvious. For me, the thought of dying whilst they are […]
  • Karen’s Story – Chapter 21

    June 2016 I have been taken off the trial as the medication is increasing my heart rate, and I didn’t fit the trial criteria anymore. This is a real blow because I really need some hope to hang on to. I need a cure and to prolong things. Up until this point, the trial had been […]
  • Karen’s Story – Chapter 22

    July 2016 My lovely friend, Roshni, and her family who we met in Mauritius have come over to see me from their home in Dubai. They stayed with Helen. We saw them every day and it was lovely. We went to watch the cricket at Old Trafford courtesy of Sunhil, and travelled in style in a […]
  • Karen’s Story – Chapter 23

    August 2016 Camping in our new caravan. Hard work! Poor Andy had to do everything. I am so helpless now. It feels rubbish not being able to help with anything. I just sit all day. I was in my wheelchair all the time. It was nice though and the kids had a ball! Rachel and Ged […]
  • Karen’s Story – Chapter 24

    September 2016 No trial. It has been closed and the drug withdrawn due to the side effect it was causing. More disappointment. I had a fall when Andy was out today. I fell whilst going to the toilet and really scared myself. I thought that I was going to die. I fell down the side of […]
  • Karen’s Story – Chapter 25

    October 2016 I’m scared about my breathing. That’s what will kill me and it’s getting worse. It was okay when I was on the trial and was regularly tested. Now I don’t know. It’s only monitored when I go to Walton every four to six months when they test my forced vital capacity. It’s the not […]
  • Karen’s Story – Chapter 26

    November 2016 I am having to spend a lot of time upstairs in my bedroom due to the lack of a stair lift. I’m struggling with boredom as I’m finding it more and more difficult to do anything. The iPad is nearly impossible now. My left arm now has started to hurt when I lift it. […]
  • Karen’s Story – Chapter 27

    December 2016 December was quiet and the house was quickly turning into an Amazon warehouse. It is keeping me busy and my mind off my deteriorating condition. The stair lift finally arrived and it saved my life. I had been in tears every day before it as I struggled up and down the stairs with Andy […]
  • Karen’s Story – Chapter 28

    May/June 2017 I’ve been facing a few more demons these past two months. I went along to the school sports day and the village fete. I feel like I have been in hiding for a long time. I’ve been too embarrassed to see old friends that I haven’t seen for a while. I have wimped out […]