My Husband's Story

Peter was diagnosed 18 years ago. He managed pretty well for ten years or so, cycling when he couldn't walk, and when his supporting leg started giving way he used a mobility scooter because we live close to amenities. It was a blow when he was no longer allowed to drive but I would drive him to activities such as gliding. The last time he went up in a glider was the autumn before covid by which time it was a struggle to get in and out of the glider. By this time a local group had been founded and we used to meet at a local leisure center for an informal group. My husband's condition was more advanced than the others and I don't think he got a lot from it. He used to go to a weekly physio class which he enjoyed and benefited from. Then came covid and everything stopped.

Transitioning to a nursing home

His condition deteriorated considerably during covid with an onset of Charles Bonnet syndrome, hallucinations and frequent falls. It was hard getting any help. He had to go into respite care for a week at the end of covid because I needed foot surgery and he never really recovered from that. They did not get him out of bed at all and I don't know if his medication was given at the right times but his distressing hallucinations increased. He walked into the nursing home but needed a wheelchair thereafter. I was unable to get him wheelchair transport to get him home so in the end he was there for three weeks. After several months of struggling to care for him at home I was beginning to fold myself, even with carers coming in three times a day, mainly because of the broken nights as well as hoisting and moving a 6ft 3 man around, so he went into a nursing home.

Advanced Parkinson's

That has been a saga in itself. He is now in the advanced stage of PD and we have been told that the type of PD he has is atypical in its severity. I think he is only still alive because he has the constitution of an ox and has no medical conditions apart from those associated with PD. He even has all his own teeth! He has very few visitors because he can't communicate with them and has always refused to go to the common room because he hates the noise, the loud tv etc. I think a support group in the earlier stages is a good idea but Peter always seemed to close his mind to what might be coming next so it was up to me to do the research and planning. Is that a male thing? We are both in our 80s now. My heart goes out to all other PD sufferers and their families.