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Theresa’s story

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

Since becoming unwell, and eventually receiving a diagnosis of PSP in 2014, she enjoys seeing her sons David and Stephen progress in life and her crafty hobbies.


She explains: Where do I begin? I think my earliest symptoms occurred in 2010 when I felt tired, stiff, found it difficult to go up and down stairs and developed double vision.

I must have gone to the GPs hundreds of times to be told ‘go for a walk’ or ‘lose weight’. In 2012 a GP referred me to a Parkinson’s clinic, where after a DAT scan, a working diagnosis of Parkinson’s was reached based on this scan and tremor. We were told this takes years, possibly decades, to get worse.

My husband took early retirement from Government science in 2012 as we thought I was getting worse. We moved from our house to a ground floor flat.

Between January 2013 and June 2014 I had six admissions to hospital with pneumonia. I couldn’t manage a month out of hospital. My walking got worse and I started using a stick and an oxygen tank, but I didn’t think I was disabled.

On Christmas Eve 2013 my ability to stand and walk suddenly went, a GP was called but refused to come out. A rehab physio came, declared it a crisis. I refused to go to the hospital, and my husband and son were trained to stand me for a frame and a commode was brought in.

My husband argued with the GPs and eventually, we got an appointment with a neurologist in May 2014. He took 30 minutes to declare ‘there’s a lot going on but PSP fits it most’. Both my husband and I were devastated, a nurse chased after us as we left saying ‘how awful it must be’. I was back in the hospital with pneumonia two weeks later.

It takes a long time to really come to terms with a PSP diagnosis.

All the internet searching my husband did made very little difference as my PSP is unique to me. The advice is general, for the good reason that’s it’s impossible to be specific.

My ability to stand with support has decreased and I have developed a more pronounced right-sided palsy. I now use a standing hoist during the day and I have to use a full body hoist for the bed transfers. I get very tired and have a ‘power nap’ during the day.

I have to use carers twice a day in the morning and evening. The daily routine is determined by when the carers come. I get aches, pains and numbness in limbs.

I use thickening fluids, but swallowing isn’t my biggest problem, which unfortunately is incontinence. I couldn’t tolerate catheters. During 2013-2015 I had multiple urinary tract infections, but recently these have declined as I take a regular dose of Cephalexin. The neurologist said at December 2014 that I was ‘mid-stage with complications showing’. We see him about every nine months.

One good thing that happened was that I was accepted by the local Ellenor hospice as a patient and I go every Monday, where I can enjoy my hobbies such as art, drawing, card making. I can’t easily do all the hobbies I was good at such as cross stitching and crochet.

I realise I have a progressive illness but I am keen to maintain as much as I can with regard to my hobbies and keep out of the hospital.

I have written an advance directive which states I don’t want to go back to the hospital if I should get ill in the future.

I love seeing my sons and watching their progress in life. I enjoy my trips to Revitalise which my husband also comes along. I have a small group of good friends who visit me.

I am lucky that my speech is still very good. I also have excellent cognition and can read books and love watching films dramas and musicals on my portable DVD player.

 

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