Living with a diagnosis of PSP – My Story
My name is Ruth and I am 72 years old. For 53 years I have been married to Joe, who
is 76 years old. Joe has had some health issues in his later years; he has a history of
heart disease, he had a double bypass and has had 6 stents inserted. He also has
diabetes. And in 2016, Joe was diagnosed with PSP.
In 2012, Joe became ill and we thought he had a stroke. We were referred to the
General Hospital and after lots of tests we still didn’t know what was wrong. From there
we went to a different hospital in the next county for more scans and more tests to be
done. There, we were told that Joe didn’t have a stroke. He received a diagnosis of
myasthenia gravis. For the next two years, Joe took medication for myasthenia gravis.
During this time, Joe would frequently lose his balance and fall, speaking became more
difficult for him and he had to stop driving.
In 2014, we moved closer to Gorey to be able to access shops and the doctor easily.
As Joe continued to deteriorate, our doctor transferred him to Dublin Hospital where we
met with a Consultant Neurologist.
The neurologist decided to do more tests as he didn’t think that Joe had myasthenia
gravis. Joe had more MRI scans, a lumbar puncture and PET scans, which took a long
time. Eventually in 2016, Joe was diagnosed with PSP, something that we had never
heard of before. Joe started new medication for PSP and life changed for us then. Over
the next few years, Joe progressed to a rollator walking frame to help with walking and
we got our first carer. We eventually had to move again from a house to an apartment
when Joe could no longer use stairs, and then to a more wheelchair-accessible
apartment when Joe could no longer walk.
Now, in 2020, Joe is confined to a wheelchair. We use a hoist to get him out of bed and
a SaraStedy to move him from room to room. In September 2019 Joe underwent
surgery to have a PEG feeding tube inserted and now Joe can no longer have solid
food. With the help of 5 carers, a district nurse, an occupational therapist, a PEG nurse
and a speech therapist, we are coping with PSP.
A typical day for us starts at 8.30am when I check Joe’s blood sugar, feed him through
the PEG tube and then give him his morning medication with yogurt. Our carer comes at
11 to shower and dress Joe and get him ready for the day. Then, weather permitting,
we go for a walk. At 1pm, Joe gets another PEG feed and more medication. Our second
carer comes at 3pm and tends to Joe for an hour. Joe gets his third PEG feed at 3pm
and medication again at 5pm. Our carer comes again at 6pm to get Joe ready for bed.
He has his final PEG feed at 7pm and his final medication at 8pm. After all of that, I sit
down. Lately, Joe has been disconnecting the night bag from his catheter tube so I get
up in the night to change his pyjamas and bedding which is very difficult because I have
to get him out of bed on my own. But we manage.
As well as our carers, our family helps out when they can. My son does a weekly food
shop for me and my daughter-in-law calls every day and runs errands if we need
anything. We receive 3 weeks of respite care each year where Joe stays at the District
Hospital for a week at a time. We also have access to a wheelchair accessible HSE taxi
for any hospital visits. We are very grateful for all of the help we receive, but despite
this, PSP can feel like a very lonely illness for both me and Joe. This is especially true
lately due to the current situation with Covid-19; our already limited way of life has
become even more restricted. PSP is a nasty illness but with the help of our carers, our
primary care and our family, we are getting on with life.