Hi all,
I just wanted to pop on here to express my sincere appreciation for this site. I haven't really participated here, but have found it to be a wealth of information while transitioning through the different stages of my dad's PSP journey. Alongside that, it has been really remarkable to know there is a community of people going through the same thing, when this seems to be such a rare disease. I think I have found this site most helpful for comparing and contrasting different symptoms so I could (sort of) feel well equip to navigate the road ahead. Some people seem to have a slow progression, and others very fast and I found it incredibly gratifying to know that others had been through the same thing that we were - and really that we weren't alone with this big, cruel, devastating monster. I'm going to outline dad's journey below, so that people in my shoes in the future can maybe feel something like I did when reading about others journey's on here. Dad's funeral is on Friday and I think after that I may disable my account on this site. PSP consumed so much of our lives over the last two years that I think I am ready to be free of thinking about it... for now anyway. Thanks so much one and all. Kia kaha (stay strong), Lucy.
Dad (3 August 1952 - 8 April 2019):
Dad was diagnosed with PSP in April 2017. His first real worrying symptoms presented as an unstable and awkward gait. His GP referred him to ear nose and throat specialist with a suspected middle ear infection. The ENT then referred him to a neurosurgeon with a potential brain tumour. After scans and tests he was referred to a neurologist, where he got the potential diagnosis of PSP or MSA (must note here we are in New Zealand, and others experience of diagnosis and medical intervention seems to differ from country to country). After that he had regular 6-monthly appointments with the neurologist, but wasn't really offered any further therapy. He was started on madopar 3 times per day.
At this point, looking back it is possible dad's symptoms started a bit earlier than when we first thought "ah something is wrong here". For maybe the last 4-5 years he had been as would be described as "out of sorts". He had withdrawn socially from his community, he had outbursts of fiery anger (dad having been a very gentle and laid back person) and sometimes I noticed he was struggling (in a minor sense) with some physical tasks.
After the diagnosis I guess his physical symptoms continued on a relatively steady but slow decline. At one stage he was taken off the madopar, but seemed to be a bit worse all of a sudden, so was put back on. Dad was a farmer, and managed the farm (with help) up until Dec 2018. I found this rough guide relatively helpful for knowing where we were "at": brainsupportnetwork.org/psp...
By the end on 2018 dad was noticeably starting to deteriorate. He was having a lot of falls, he had problems with insomnia and he was dribbling very significantly. Just before Christmas he was put on atropine in the hope that this would help the dribbling, which was annoying for him and embarrassing. Atropine caused dad trouble almost immediately. He began to hallucinate and had a terrible time for a few days. Atropine was stopped, and the hallucinating stopped.
Also just before Christmas we noticed dad was really struggling with the farm work, and he just wasn't able to cope with it anymore. We put some plans in action to have it managed, and he started to spend most of his time indoors.
After Christmas, things continued to go downhill quickly. Dad had a very bad accident on the farm in a vehicle he wasn't meant to be driving, and he had a very bad fall inside after getting out of the shower. He was having trouble getting in and out of chairs, we were walking alongside him everywhere he went in fear he would fall and he was having bowel issues (alternatively constipation and incontinence).
He was referred to hospice care at the end of January and had a short stay in the hospice so his needs and medication could be assessed. He also started to have a caregiver coming once a day to help give him lunch. Over this time, between my mother and siblings, one of us was always at home with him as he wasn't safe to be there on his own. We wanted to keep him at home for as long as possible.
Six weeks ago, he could no longer walk without 2 people supporting him, and he couldn't get down a step to get to the toilet and shower in the house. Here we agreed that he needed to go into care. His GP signed off 6 weeks of free palliative care in a hospice bed at the local rest home/hospital.
From here he was prescribed morphine to help with his significant stiffness and his wheezy breathing, also cloneazipam for anxiety and to help with sleeping. We really rallied together and made sure there was always enough people (at least 3 others) to be at his home with him at the weekends. He hated the rest home and didn't want to be there, but there was no other option.
In the rest home he continued to deteriorate, and food become difficult for him to swallow. He progressed from eating full meals, to having pureed food, to really just living off smoothies and soft sweet desserts (like custard and sorbet). The phlegm in his chest also started to really worry him and his chest muscles suddenly weren't strong enough for him to cough any of it out. His voice became soft and almost inaudible and he started to sleep a lot.
In his last week things got worse and worse. He couldn't swallow anything, so was put on a subcut medicine pump. We brought him home for the weekend and he had a terrible night’s sleep on Friday. Just letting out terrible moans in an attempt to cough. The next day medazlam was introduced to his pump and he went into a coma. His lungs sounded like that noise when water is drained down a plug hole, and mucus was bubbling up from him lungs which we were swabbing away every 20 mins or so.
On Monday, after 2 days of being in a coma he spiked a high temp, and a bad smell started to come from his mouth. I guess this was pneumonia. After an hour or so, he peacefully purred out of breath with all his family by his side. I suppose it was a peaceful end of a cruel journey.
The end of this journey had come
This journey is a terrible one
The end of my father's PSP journey.
Olive's PSP journey is over
Kathy is near the end of her PSP journey
