Hello everyone,
I've made a journal (retrospectively) of John's journey through Stroke to ParkinsonIan diagnosis. It might be of interest to Jason and the new MSG supporters as well as yourselves. If we can be of any help to people going through a similar journey, please feel free to ask. It's a bit long! ????
John Woodhouse, Age 77
Stroke 7/2/2017
Diagnosed ParkinsonIan traits Feb 2020
Brief history
John was reasonably fit prior to his Stroke, regularly swam at the gym and played golf twice a week. We also danced every week and our social life was active, ie quiz, entertaining, U3A activities , holidays. He suffered with arthritis and this would occasionally interfere with this routine. Sometimes, at the dance, he would stiffen and be unable to move. Sometimes, he had to cancel golf because of arthritis pain. Often, he found difficulty picking up balls in boules.
Tuesday, 7th February 2017
John had a Stroke around 11.30 pm. By chance I responded to a text message just after retiring to bed, turned on the light and noticed immediately. (He’d played golf on the Monday, swam on the Tuesday and we’d entertained that evening). He was totally paralysed down his left side, lost speech and coordination, but was thrombolised within the hour. His initial recovery was so good that he was able to shuffle out of the hospital six days later. Because of this quick recovery, he was not referred to rehab. It was a huge achievement to jump the queue with Care in the Community as we’d booked a holiday and needed advice. He received OT and physiotherapy intermittently until August 2017.
Stroke fatigue has been a major drawback in recovery and he has had to sleep every afternoon (even now) although it has eased over the years. He practiced walking along the coastal promenades (flat pavements) and he tried going back to swimming and using apparatus in the gym. He even tried to teach me golf! Initially, there was improvement in his mobility, coordination, ability to do thing’s around the house and garden. That has plateaued. However, we’ve managed to have holidays at home and abroad, so it is not all doom and gloom. He even started dancing again, albeit intermittently (but that soon petered out), and played boules with U3A. We still had/have an active social life.
The first year was quite traumatic, fighting with DVLA to renew his driving license (unsuccessful), operation on eye because of ingrown eyelashes, coming to terms with disabilities caused by the Stroke (left neglect and left sided weakness) but we battled on together.
Christmas 2018
John developed plantar fasciitis whilst on holiday in Madeira (although it’s possible the diagnosis was wrong!!). His foot swelled up after walking on cobbles and it was extremely painful to put weight on it. He saw a nurse in our local A&E on January 1st 2019 who diagnosed plantar fasciitis, gave him a walking stick and advised it was a lengthy recovery process. Despite this, John visited the GP surgery constantly over the next months and was given painkillers, and finally furosemide to reduce the swelling. He saw his named GP in June (for the first time as previously saw locums). The GP didn’t examine him, just briefly glanced down at his leg, told him he was 76 and ‘get on with it’. It was so disheartening. Soon afterwards, we asked a different locum to refer John to a Neuro specialist. This was declined by Neurology but, thankfully, he was sent to the Movement Disorder Team. His nurse saw him on Oct 1st and was so diligent, taking him through his paces, watching his progress over several weeks, aware of his efforts but in January 2020 she voiced concerns and suggested he saw a specialist for proper assessment.
Christmas 2019
Lisa’s call was so reassuring because I had been very concerned whilst on holiday in Tenerife, (Christmas 2019), when John’s movement’s completely deteriorated and he froze, he started leaning/falling backwards. I had to catch him to steady him, managed to grab a chair and sat him until he was able to move again.
In February 2020 John was referred to South Tyneside Hospital (not our local Hospital Trust) and saw a consultant in Care of the Elderly. He was able to assess that John had ParkinsonIan traits but delayed medication because John was doing Otago exercises, gym, walking short distances, going to the driving range, as well as other activities. However, in May, because of the constraints of Covid and we were outside our own Hospital Trust, he phoned to say he had to discharge John back to his GP, advising strongly that he needed to be referred to a local (Durham) specialist immediately. We were told that was not possible until July 1st. because of Covid. John was eventually referred to Sunderland hospital (the same hospital trust as South Tyneside where he’d been discharged from). To “compensate” our GP had spoken to a Consultant (we don’t know who or where) and been told to prescribe Levadopa. Correspondence on the Appointments letter from Sunderland was not signed but states he will be contacted in due course.
Current situation
In the meantime, John continues as before. He is doing Otago exercises regularly and recently had brief sessions in the gym to build stamina. It is clear that the gyms being closed has had a negative effect on his mobility. We continue to socialise, mostly via video links but are now starting to venture out, being very careful of social distance. We’ve been to the driving range twice, driven to the coast to take photos for the photography group and he has pottered in the garden. But Medically? we’re travelling blind! Yet Again!
V&J