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Susie’s Story

Mum’s immobility inspires physiotherapist daughter to take on 10k challenge

An accomplished HR Manager and relationship counsellor, Barbara Easteal found herself with gradually declining health and symptoms that seemed to suggest a brain tumour.  However, her final diagnosis turned out to be CBD.  Her daughter, Susie, tells her story.


After getting married in 1972, Mum and Dad settled in Harlow, Essex and had two daughters; me and my sister Sophie.  She had a career first in counselling and then HR, and retired in 2000, enjoying her hobbies of sewing, travel and singing in the church choir.

Around four years ago, in 2015, Mum started suffering some odd symptoms.  Her speech changed, she would take much longer to vocalise whole sentences and there were often long pauses in her speech, as if she was really struggling to get the words out.  This was followed by her inability to do her beloved sewing, she just stopped completely and had to admit that she couldn’t hold the needle in her fingers any more.  I honestly thought she might have a brain tumour.

Initially  Mum and Dad didn’t want to recognise that anything was wrong, but after some encouragement, they went to the GP who initially thought it might be Parkinson’s but referred Mum on to a neurologist at the Rivers Hospital in Sawbridgeworth.  He told Mum that he was sure she had CBD, and a trip to see Professor Rowe at Addenbrooke’s Hospital in Cambridge confirmed it.

Mum understood that nothing could make it better, there was no real treatment and the prognosis was a lifespan of around six years, although it was possible that she would have a heart attack before then.  It was not a sunny outlook.

Initially, Mum was resistant to therapy, but she has now had six sessions of physiotherapy and two sessions of speech therapy to aid her mobility and verbalisation.  We can have more speech therapy whenever we feel necessary, and the occupational therapist has been in to see her.  I did offer to give her some physio treatment myself, but to be honest, she now tires so quickly from any exercise that physio at this point would be of limited benefit.

Mum was prescribed the drug Madopar that is useful in Parkinson’s and may have some value for CBD.  Unfortunately, this made her symptoms of unsteadiness worse and so was stopped.  Mum and Dad see the local Parkinson’s nurse fairly frequently to help them cope with her ongoing decline.  Through a local hospice, St Clare’s in Harlow, Mum has access to a weekly neurological condition support group, which has also helped her cope.

Both Sophie and I have used the PSPA helpline and found it really valuable to have someone to talk to and give us really useful advice.  I’ve treated someone professionally with PSP and know how someone presenting with this is likely to be, but it still helps to have that detailed knowledge on the other end of the telephone.

Mum’s CBD changes from day-to-day.  After losing her confidence behind the wheel, she gave up driving around 14 months ago and has slowly become very immobile to the point that she can now only take a few steps at a time.  She prefers not to use her walker but instead to have someone walk with her. However, she is becoming more and more immobile as the CBD progresses.

My children, Rose and Ella, are aged 12 and 8 and both know Granny is very ill, but have found Mum’s deterioration quite a shock.  The hospice have been able to offer counselling to all members of the family that feel they need to talk to someone.

Over Christmas 2018, she went into a period of rapid decline after a bout of constipation, and within a few days could no longer even climb stairs.  Dad wants her to stay at home and care for her, but it’s becoming more and more difficult.  Recently he agreed to a live-in carer for some respite time over a weekend, and he also pays for a carer to come in twice a week to wash Mum in her chair.

I know how much it costs to keep the PSPA helpline going, and that’s why I wanted to raise some money by doing the London 10k.  I’ve done some running before – a couple of half marathons under my belt – but this one means so much more because it’s for Mum.  There are four of us doing it as a team, two of us are #TeamPSPA and even though my husband got his place through the ballot, he has also managed to get friends to donate to my JustGiving page as well.  So far I’ve raised over £700 and I’d really like to get to £1000.

I know that it’s too late to find a cure for Mum, but if PSPA can keep helping families through the helpline and by funding research, then I’m only too happy to lace up my running shoes and get out there.  I’ll see how I feel at the end of the 10k, this may not be the last you see of me!

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Lynette, from Wokingham, explains how she copes with daily life with CBD

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Chris lives in Orpington, South London with his wife Margaret and was diagnosed with PSP in March 2015.

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Theresa, 57, spent many years volunteering with organisations including Oxfam, DIAL Kent, and her local volunteer bureau.