My mum- sharing thoughts and our experience

About Parkinson's and health Symptoms
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My mum has sadly died after having Parkinsons for 20 years.

My mum was an amazing, kind, positive person who always told me that things would work out in the end.

When first diagnosed in 2003, she was told that a cure wasn’t far off.

It makes me sad that a cure never came. I don’t feel that we are any closer to knowing, 20 years later.

My main question is:- why are we none the wiser with coming to the root cause of Parkinsons? What would need to be true for us to find out?

I would like to describe our experience here, in case it helps other people.

If you are in the same situation with a family member who has Parkinsons, I would recommend that you get Lasting Power of Attorney whilst they have full capacity. I also have found it was good to get my mum’s final wishes before it comes to an emergency, with regards to a funeral and how she would like to be remembered. It gives me some peace knowing I have kept that information safe.

Other things I wish I had known:-

I was always grateful for the amazing people on this forum. Sometimes, myself and my family just felt lost and felt as though we had nowhere to turn, even with the help of forum members.

I think help/ advice ‘in person’ should be more readily available. We had a Parkinsons Nurse and the Hotline but honestly, in really bad periods, we felt there was nowhere really to turn.

We carried a fear for the future/ repressed it as we had no idea of what help there would be when we were no longer able to cope. This always caused a heavy weight of underlying stress for all of the family, including my mum, for many years.

As it turned out, after several emergencies, we got funded help through way of a local agency after CHC assessment. The 24 hour care was amazing. I understand this is a limited resource, but if we had known this had even existed, years ago, it would have gone a long way to ease family concerns and worries.

I hope this is helpful in sharing our personal experience. Thank you to everyone on here who helped me with their comforting words and wonderful advice over the years.

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Hello Havana S
I just wanted to say how sad I was to hear of your Mum’s passing. I kept up with your occasional posts and read this with mixed feelings. You make some very valid points but I also know you did the very best you could both for your mother and to keep normal life going for your young family and work commitments for an extended period of time. You have my utmost respect at how you managed to juggle so many balls and always somehow managed to be there for all - at least that’s how it always seemed to me. I hope you know that, just as I am sure mother also knew. No-one could have done more.
Tot

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Thank you Tot. I will be forever grateful to you as you showed the most amazing kindness through some very challenging times. My mum was able to stay at home with my dad and the incredible care support team if I didn’t make that clear in the original post, which was her wish. So I am truly grateful for that support.

My reason for the post was that I wanted to help other people understand how much comfort it gives me now, knowing that we talked about my mum’s final wishes before it actually happened. Also to say how thankful we were that we had put the Lasting Power of Attorney in place, because we needed to rely on that so many times over the years to ensure mum’s wishes were met.

As a family, we have donated to the Parkinsons organisation as a way of saying thank you as to help towards finding a cause. The members on here have been incredible throughout the years in terms of sharing advice and comforting words. I still think that we had years of underlying worry/ concern of what truly would happen as things progressed and maybe more ‘in person’ local help/ information could be out there, to address that.

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Hello HavanaS
I couldn’t agree more. Even though these are difficult conversations I do think it is important they take place before needed. I am just coming up to the 14th anniversary of my diagnosis and am fortunate to still be doing well. Having said that I have had a POA in place for some years, I have made a Will and my family know what I want if I need to leave my flat, how I want them to make decisions for me as my condition progresses and funeral arrangements when I die. I have just started putting together some other information that may be helpful about the system and more particularly, how it works locally - I haven’t quite worked out the best way to do this but I am working on the principle that if nothing else, it will provide a starting point. In actual fact I have found it quite empowering to have taken these steps as I feel I will have some control over my own life at a point when I may not be able to do that directly.
The system is not perfect and although you make very valid points, change will not be quick because the demand for services is increasing but the money available only spreads so far. I think this makes it all the more important that conversations about what the individual wants as the condition progresses and action taken to put things in place happens sooner rather than later. Leaving it until the situation is rapidly heading towards crisis just adds to the stress a hundred fold and can and frequently does complicate the situation.
I am glad you were able to have those conversations and have things in place as your mother’s Parkinson’s progressed and it is clear that helped at the time and gives you some comfort and peace now. I hope that some of those who read your post, heed the advice given and look to start putting their own house in order.
Tot

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Thank you. Your advice is brilliant. Glad to hear that you are doing ok. I hope that continues and it sounds as though you have put everything in place.

I hear of these Parkinsons cafes- which I assume is a gathering of local people.

What I would love to happen is that each town has a ‘physical/ permanent’ cafe, dedicated to Parkinsons.

I view it as a ‘Central Park cafe’- that could even be the name- where the cafe is designed by people with Parkinsons, employees who work there can have Parkinsons (obviously with the roles they are able to do), there is exercise equipment that can be used by people with Parkinsons, different creative sessions to help enhance the life of everyone who has the disease. There would be a ton of information there on who to reach out to, when times get tough.

The cafe/s would be welcoming to all and be self funding. If the Parkinsons organisation want to reach out, I would love to work on this if it doesn’t already exist in this format.

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There are already some out there HavanaS, put Parkinson’s Cafes uk in the search and have a look. Here is a few links - they just happened to be at the top.
Tot

https://solihullparkinsons.org.uk/solihull-parkinsons-cafe/

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Great- thank you. Good to know they exist. I see this one is in a retirement home. I was thinking more of a buzzy cafe that is integrated with people who don’t have Parkinsons too, so that the word is spread further. Something on the high street.

It just happens to fund Parkinsons research and people with Parkinsons heavily involved in the design/ creation and working environment.

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Very ambitious but I think there is a gap in the market so to speak. Worth looking into and it could be an interesting, challenging and satisfying project. One thought did occur to me and that is it would be nice to call it something connected with your Mum, not necessarily just using her name but something or somewhere she loved, in her memory. I never met your Mum but somehow I think she would like that.
Do keep posting with updates if you do decide to give it a go - there may be some on the forum who have talents, skills and/or ideas that can help.
Tot

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Havana S, I’m sorry for your loss. It sounds like you have been a phenominal support to your mother.
I am 2 years diagnosed and am very concerned not to be a drain on my children.

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Hello
Thank you. I have learnt a lot about Parkinsons in the last 20 years. I hope you are doing well and that you have many years of doing all the things you want to do. My mum had 12 good years where you never would have known that she had Parkinsons.