10 years in

Hi, I’m hoping some of our experiences of my Father’s Parkinson’s journey may help others. He was diagnosed around 10 years ago with Parkinson’s with Lewy Bodies and has had a relatively slow progression. He is now 84 and cared for by my Mother.

We now know that his first symptoms appeared some years before diagnosis as acting out and shouting whilst dreaming. At the time we’d laugh at my parents’ stories but now realise there were more sinister reasons behind his actions.

Some years after this I remember on a walk thinking he wasn’t swinging his arms and his facial expression was rather blank. We also realised his peripheral vision was going when we were playing cards one holiday. My mother was in denial at this stage and he continued to live (and drive!) as normal. Eventually we persuaded them that something was amiss and a diagnosis was made. Dad’s driving license was cancelled and life pretty much continued as normal on a half dose of Denepezil with the occasional fall or restless night.

Over the years tremors increased and Levedopa was prescribed, always at a very low dose. Mum, who is 3 years younger kept him active, taking him for his daily walk, helping her with the chores, and driving out for days. As changes were very slow over these years it was difficult to chart a significant decline but handling utensils became more difficult and he acquired a shuffling gait.

Last year we began noticing more significant changes; both parents nightly sleep became terribly affected by my Father’s need to pee every 1-2 hours at night and they both became stressed and exhausted. We had no idea which way to go with this; it was post lockdown in a small coastal town help and advice was very limited. We tried reducing drinks, caffeine, using the toilet before bedtime, Melatonin, a commode by the bed, but nothing helped. Falls became more frequent and they were regular visitors to A and E to patch up wounds from falls. Fortunately he suffered no bone breakages but we knew this was only a matter of time. Both parents were by now looking ill and exhausted. I’d read that Donepezil could help with falls but no Medics wanted to alter his mediation so we soldiered on.

Eventually last summer Dad suffered a severe bladder infection and was admitted to hospital. He was very poorly for some weeks and declined further. He was very confused, blood pressure crashingly low requiring 24 hour care as he would drop and his pulse would all but disappear. He was catheterised on admission to hospital and slept well with this but this was removed as soon as discharge was mentioned. However the hospital would not discharge him to Mum’s care at home so Care Homes were discussed.

As a family we could not allow this to happen as he was confused and a high falls risk. We stalled his discharge as there appeared to be no solution. This turned out to be a saving grace as a very good Consultant decided in this time to alter his medication. Donepezil was finally increased, and a powerful blood pressure tablet was prescribed with an antidepressant. I resigned myself to giving up work for the foreseeable future and move in with my parents to get him hope and free up a hospital bed.

Week one; hospital bed, commode and accessible shower installed. Morning carers organised to get Dad up and showered, night waking and toiletting was shared between myself and Mum. It soon became apparent that the nights would make living this way untenable. None of us were sleeping and none of us were happy. Eventually I made desperate calls to the GP and health visitors. It took several hours of conversation to convince them that the ONLY solution was to re-fit a catheter. I had lasted four nights!

A catheter was fitted that afternoon. I cannot explain the difference this has made to everyone’s lives. Dad (and the rest of us) began sleeping 11 hour nights, his cognition improved with quality sleep; Mum can cope with his care with the help of one carer visit in the morning to get Dad up.

Week two; I moved back home to my husband.

I hate to think where we would be had I not been bloody minded enough to argue for a catheter. I believe our only option would have been to put him in a home as his night care was so wearing for us all. My parents are currently living a calm, quite life in their own home with one daily carer and a weekly visit from a Health Visitor.

Until the next time….phew!

Hi and a very warm welcome to the forum, @AnnieE. That’s a powerful story, thank you so much for sharing it with us all. There are many here who will relate to what you’re saying and I’m sure they’ll join us soon to welcome you here. I’m so impressed by your willingness to persevere throughout this journey. Your parents have been very fortunate to have had you on their side, going the extra mile to get what you knew what was the right treatment, and it’s paid off.

I’m looking forward to hearing more from you in the future.
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Hello AnieE
I just wanted to thank you for posting your experiences and I am very pleased you have, for the moment anyway, reached calmer waters. Since developing Parkinson’s myself I am of the view that I whilst I need to take on board the advice and recommendations of my medical team because of their knowledge and expertise - and I am fortunate in having an excellent team - they do not have Parkinson’s and there is a subtle but nonetheless significant difference between knowing about it and having it. I am seen by my medical team twice a year for maybe half and hour, the rest of the time I manage my symptoms and get on with my life (I can contact them if needed between formal appointments i) I therefore feel I am better placed than they are to judge if something seems to be appropriate for me, worth trying or will not work for me because… It is inevitable that at times that means standing my ground and arguing my case. I haven’t had to do much of that up until now as we basically agree but I am very conscious this may change as time goes on. It is a fine distinction between taking good advice and acting on it and being self aware and having reservations. I like to think that most of the time good discussions will resolve any concerns on either side; however when necessary I do think it important you fight your corner. The person with Parkinson’s, their family and friends are the people who really know what living with this condition in whatever capacity, means and should have a voice that is listened to. It can take effort and energy as you have found, that can be better used else,where to be honest but it is worth it. Your post graphically illustrates my point and again, my thanks.
With best wishes to you all.

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Hi Tot,
you obviously have amazing understanding of the condition you have found yourself with.

I’ve found it interesting to watch from the outside the practicalities of living with the disease and the interactions with the health services. There is no doubt that everyone involved cares enormously and wants to help everyone live as well as possible with the disease.

I have found that some health services apparently work around a “tick list” of criteria that is very difficult to navigate and being one step back from the issue I felt better placed than my parents to argue their corner. Most frustrating was satisfying criteria to get Dad discharged from hospital and I found I was in some cases bending the truth to jump over hurdles. Lucky in our case that the outcome was good for us!

Our local Admiral Nurse was fantastic and a key link to fighting our corner and facilitating our needs and wants. The OT’s were also great. The poor Health Visitors however are obviously overworked and I believe dumped on, but we have a good regime in place now where my parents are as self sufficient as they can be with minimal help.

We’ve learned that minute alterations in medications can make all the difference (the difference between my father being a confused, tired and sad man and the switched on Dad with good cognition that he always was). It really is worth putting time and thought into if you are able; I spent hours watching YouTube lectures trying to understand the medications and their problems and I found American Lectures particularly helpful as they have very a slightly different approach which is also worth consideration.

You sound very upbeat and very much in control. Good luck with your journey,

Annie x

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I got ďiagnosed with parkinsons some seven years ago and it was upgraded to parkinsons plus three years ago. It is very rare and has many facets all of which are difficult to decipher when they are added to the regular lķevel of parkinsons ailments .