Ray Wiffen shares his story about CBD.
I first started noticing that things where going wrong in early 2005.
It started with little niggly things, like not being able to hold a cup of coffee properly: I noticed it would slowly start to tip and I would lose my grip on the cup without even realising it... Or I would have a bath and keep dropping the soap and I thought that it was just because it was slippery... Then I would get out the bath and go to shake the water off but my legs wouldn't let me do it; I would try the same with my hands - my left arm was OK but my right arm wouldn't let me shake it with any rhythm. I couldn't shake the salt pot either. When I bent down to stroke a dog my arm just wouldn't let me do it. It was like my arm had a mind of its own and it wasn't receiving the signal from my brain to do what it was supposed to.
At first I thought I had a trapped nerve in my arm or my neck because I started to get a cold hand with numbness and pins and needles constantly in my right arm. In June 2005 I made an appointment to see my GP, and after a thorough examination he referred me to a Consultant Rheumatologist at Colchester General Hospital.
I received an appointment in October 2005. After an examination, the Consultant decided that the trouble I was getting with my right arm was down to a frozen shoulder, so I had an injection to my right shoulder and was sent for a course of physiotherapy at my local hospital to save on travel expenses.
The physiotherapy went on for three or four weeks but it didn't cure the problem.
I went back to my GP on three or four different occasions. He decided to make another referral to the Consultant Rheumatologist. I got an appointment in January 2006. This time Dr Walton gave me a thorough examination and made a provisional diagnosis of right carpal tunnel syndrome, together with other nerve abnormalities including a potential impingement at the right shoulder and paraesthesia affecting the fingertips. I was then sent for an ECG examination and it was decided I would have to have a carpel tunnel decompression performed. So in July 2006 I had surgery on my right hand and later that month I went back to hospital to have the sutures removed. The wound had healed with no signs of infection and circulation was intact.
Unfortunately, by September 06 I was still having trouble with my arm and hand. By this time I was getting frustrated as it seemed like I was just going round in circles and getting nowhere.
After returning to work I couldn't seem to get the strength back in my right arm. I kept dropping things and couldn't lift anything heavy. So I pushed on with my life until January 2007 when my right arm was still not performing like it should and I was getting a lot of pain in my neck and shoulder. I went to my GP again and he said I just needed some physio. So in February 2007 I was referred to Halstead hospital for treatment which did not improve my symptoms.
Once again I was referred back to hospital to see the Consultant Rheumatologist where I was told the carpel tunnel decompression performed in 2005 had not made any difference to my symptoms. Once again he gave me an injection for a frozen shoulder and mentioned that my symptoms could have something to do with Parkinson's Disease, so decided to refer me to a neurologist.
In November 2007 I saw the Consultant Neurologist at Colchester General Hospital. I had a very thorough examination and was told I would have to undergo an MRI SCAN. This appointment was made for the end of December and a follow up appointment was made to see the Neurologist for May 2008.
While I was waiting for my appointment I carried on as normal but I was gradually losing the use of my right arm and at the same time I started losing my balance a lot. Then my arm started to get more painful, which made my job very difficult. I was working as a sand blaster, a hard and dirty job blasting the inside of various chemical tanks (so there could be a connection there somewhere with CBD...). I went back to see my GP as I just couldn't do simple everyday tasks without being in pain. This was in the middle of February 2008.
He said he had got the diagnosis from the Neurologist but had been told by the Consultant that it was to be him that told me what was wrong with me. I would have to wait until May to find out! This made me feel lost and worried not knowing what was wrong with me.
I tried to find out from my GP but he wouldn't tell me. I told him I couldn't carry on in pain for another three months so he told me I would have to go on sick leave until I saw the Neurologist, but when I got home I sat down to fill in the sick note and he had put reason for absence from work was Cortico Basal Ganglionic Degeneration. I was straight on the internet to look it up, which worried me even more... I was hoping they were wrong.
All this time my boss at work was adamant that I was making it up and I just wanted time off work. Not knowing anything about what was wrong with me, I couldn't explain to anybody how I felt.
In May 2008, I saw the Consultant Neurologist. He was very nice and very professional in the way he spoke to me. He sat me down and said, "I'm very sorry but you have a neurological disease called CBDG; it's a progressive disease and you will have to stop work from that moment as it is not going to get any better, and be prepared for it to get worse."
So from the time I started getting symptoms in 2005 I finally found out what was wrong with me three years later in 2008.
It was hard to take at first, but you have to stay positive and take each day as it comes.
I wasn't given much supporting information on diagnosis, apart from being told by the Specialist to retire early and that I would be classed as disabled. He made a follow up appointment to see a Neuro-Rehabilitation-Physiotherapy Team Neuro nurse, Anne, who has been such a big help in getting me all the help I need.
After having physio for a few months my wrist and hand got weaker. Anne sent me to see a hand therapist who made a splint for my wrist which supports it and also stops the pins and needles. From what I've been told as the disease progresses your hands can clench up so tight that your nails dig into your hand so I discussed this with him and he said he could make a splint to stop this. As your muscles can get stiff and lead to cramps, the Physio arranged for me to try hydrotherapy.
It's great - it works a treat and I would recommend that anyone with CBD or PSP try it if it's available at their hospital. I started getting trouble with my speech shortly after diagnosis. There are times when I choke on my food or drink. I'm ok if I concentrate on what I'm doing, so I now see a Speech and Language Therapist every two months which has been very helpful in managing my swallow and breathing, through exercise.
My Physio also recommended that I meet with Gillian, the local Information & Support Worker from the Parkinson's Disease Society. She arranged to come and see me at home and was great. She understood what I was going through and how I was feeling. It made me feel that I wasn't alone in dealing with the disease. She made phone calls on my behalf and filled in disability forms for me. If it wasn't for Gill doing this I wouldn't have got a motability car, which gives me independence and allows me to get out and about.
I remember telling my sister on the phone the day I was diagnosed. I texted her as she was on holiday and she replied that she would always be there for me whenever I need her. My wife and children understand what is happening and we are a close family. We all help each other out whenever it's needed.
I think the thing that would have helped me most would have been a better understanding of the disease at the time of diagnosis, as my own GP had never even heard of Cortico Basal Ganglionic Degeneration, or PSP. He was as much in the dark as we were but he tried his best.
As for health and social care being in place, I have regular physio at Neuro Rehabilitation and Hand therapy once every two months which is very useful. I also have Speech and Language Therapy which has helped with my swallowing and my volume of speech. I had to have a video X-ray done of my throat as I was choking every time I had something to eat or drink. Results were that the throat wasn't closing up, it was the reflexes of the muscles in the throat making it slow to open.
I have regular sessions of hydrotherapy which is great in keeping the muscles loose and stopping cramp, I also have a lot of contact with Gill the support worker - without her help and support I don't think I could have had such a positive attitude on life knowing I have got this debilitating and incurable condition; she's always there when you need her.
When I first packed up work through ill health my wife phoned social services to book a visit by an Occupational Therapist. After waiting for three months we finally got a visit. She was a nice lady, got us hand rails fitted around the house and outside, grab rails in the bathroom and near the front door.
The biggest problem I was having was getting in and out of the bath. Having lost most of the use in my right arm I couldn't lower myself in the bath, then when I tried to get out I wasn't strong enough, so we asked for a shower to be fitted which she agreed to do. After waiting for six months she came back to the house with someone from the council. They had a look and said that if we wanted a shower we would have to move into a bungalow, but there was a five year waiting list... I could be dead by then - and I haven't seen the OT since... That was over a year ago, so in hindsight I think I've been treated very badly and let down by Social Services.
I don't think that having CBD has affected my quality of life that much. I still enjoy myself as much as I can but I know my limits; there are a lot of things I can't do any more like run or play football and snooker, but that's life! You just have to accept that you can't do it - there are many people worse off than me.
I think having CBD has had quite an impact on my family and friends. It's brought the family closer together. I see my sisters a lot more now than I ever did when I was working, I go round for lunch whenever I feel up to it; it's great to sit and have a good chat and tell them how you feel. I talk to my brothers more now since I've been ill; we ring or text each other at least twice a week.
My own children know what is going on, I don't know if they realise how bad it's going to get or that it will finally take my life. But we try to keep positive about most things and carry on as normal if we can.
I think it's had a bigger impact on my wife. As well as looking after the children and the family home and cooking for us all, she is now my main carer. She helps me wash and get dressed in the mornings and the same at night. She also makes sure I take my meds on time and gets my meals ready. I sometimes think she would be better off without me to worry about; by the end of each day she's shattered. As for my friends I'm very much the same person in their eyes. They just have to give me more time to answer them as it takes me longer to think what I'm going to say and then it takes me longer to get my words out and they find it hard to understand me and hear what I'm saying because my speech is so quiet.
I think the thing that would have helped my family friends and my main carer was a bit more information about the disease and more understanding of what is going to happen later in life, especially when I was first diagnosed as not many people knew enough about CBD.
I know now, mainly down to The PSP Association, that there is a much better understanding into this horrible disease.
I haven't really received any support from anybody for planning for later in life, I've just made sure that my finances are sorted. I've sorted out my will and I had my solicitor draw up my lasting power of attorney just in case I go downhill fast. It's better to be prepared because you just don't know what's round the corner.
I first found out about The PSP Association from Anne, my physio at the Neuro Rehabilitation Dept, at Colchester General. We sat there one day talking about my illness and I just happened to ask whether she saw any other patients with CBD, as I wouldn't mind having a chat with them to see how they coped with the disease. So she said why don't you look on the internet and find out about The PSP Association so I did and I haven't looked back since.
The support that I have received from The PSP Association since I become a subscriber has been outstanding. It's great to talk to people that understand what you are going through. I have been to three or four local support meetings in my area in the last year and the people from The PSP Association are great. It's nice to be able to sit and talk about the problems you are having and just to have somebody listen to you that knows what you are going through is a great help.
Looking back, I don't think that any of the support that I have received from The PSP Association hasn't been helpful right from day one. They are always there when you need them, at the end of the phone and if you can't talk to them right away they always call you back. I think all the support I have received from The PSP Association has been excellent.
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