When Parkinsons with Lewy Body joined the family . . .

I want to tell you a little story, it’s about our family and Parkinsons. I met my Husband in 2002 when I moved to Peterborough, but we didn’t become a couple until 2004. It’s always nerve-wracking meeting a new partner’s parents, but I hit it off with them straight away with my Father-in-Law Harry. He has a wicked sense of humour so I knew that I could have a giggle with him.


Meet Harry

In his younger days, Harry was a very well-respected Bank Manager for one of the biggest high street chains and as a result, the family lived in South Africa for a few years whilst Hubby and his younger sister were small and this is where their youngest brother was born. Unfortunately, Harry had contracted Tuberculosis whilst they were out there and he was very ill in hospital when Lyn went into labour weeks early.

Harry is a great Dad to his three children, a lovely father-in-law and a wonderful Grandad to his seven Grandchildren who all love him dearly, he is a kind and caring man but he keeps them in check and they respect him for it.

In recent years, Lyn became aware of how forgetful Harry was becoming and he would fall asleep at the drop of a hat. It was something that most of us put down to his advancing years but being in his company 24 hours a day, Lyn was sure there was something more serious so they pursued it with the Doctors. In 2015 Harry was admitted to Addenbrookes Hospital in Cambridge where he stayed for nearly 8 weeks. This was a very difficult time for the family with Lyn, Simon, Emma and Jon having to travel back and forth on the A1 every day to see him. His medication made him have psychotic episodes which were frightening for the family to see and understandably very frightening for Harry too. At the time they kept being told, they didn’t know what was wrong with him but they thought it was neurological.

Eventually, after further tests, Harry was diagnosed with Parkinson’s with Lewy Body Dementia. It was decided that Harry would remain at home with Lyn for as long as possible. That being, for as long as Lyn’s health wasn’t affected too and for as long as Harry was ‘safe’ and didn’t need additional care. When the time comes, we will search together as a family to find the right TrustedCare provider for someone with dementia/Parkinsons, as we all want Harry to be as happy and well cared for as possible.

What is Parkinsons with Lewy Body Disease?

Dementia with Lewy bodies is diagnosed when someone has the symptoms of dementia either before or at the same time as developing Parkinsons-like problems with movement (called motor symptoms). But in some cases of dementia with Lewy bodies, no motor symptoms may develop at all.

The name comes from the Lewy bodies – tiny protein deposits – found in certain parts of the brains of people with the condition.

Dementia with Lewy bodies affects a person’s memory, language, concentration and attention. It also affects their ability to recognise faces, carry out simple actions and their ability to reason.

People with this form of dementia commonly experience visual hallucinations, which can be quite vivid. This can happen early on in the condition. They might also experience difficulty in judging distances and movements, which can cause them to fall over for no apparent reason.

The Future?

This form of Dementia shares similarities with Parkinsons and Alzheimer’s. It is a progressive disease, which means it will worsen over time, but most days are different. We have found that if Harry knows we are going to be getting together as a family he is able to mentally prepare himself for it and will stay quite lucid for a few hours but as he begins to tire the cracks begin to show. He will lose concentration, lose balance, lose his temper quickly, suffer from hallucinations and will sometimes fall asleep. His body goes into painful spasms when he is sleeping and so his sleep is disturbed too. He can often find the children are now too loud and boisterous for him, so we try to explain to the children as best as we can that they need to be calm around Grandad, but when you get seven children and three dogs together, it’s anything but calm.

Sadly, at this point, there is no cure or specific treatment for Dementia with Lewy Bodies. Harry takes medication to ease the pain in his joints, together he and Lyn attend a few of the Parkinson’s groups in the Peterborough area to help with his mobility. They attend Parkinson’s Pilates, Dance & Movement and a Parkinson’s choir, which helps to keep the vocal cords supple.

What can we do?

Like any family whose life has been affected by a horrible disease, we want to do all that we can to help Harry and others like him. We would love to find a cure or at least something to halt the progression, but this can’t be done without the support of the public and fundraising events.

Parkinsons with Lewy Body

On the 24th June, Harry’s 71st Birthday, my Husband, Simon, will take part in the Solstice 100 Mountain Bike Sportive to raise vital funds for Parkinsons UK so that they can keep working to find a cure so that other families do not lose their loved ones in such a cruel way. He is hoping to raise £1,500 via Just Giving but he cannot do it without the help and support of everyone out there who reads this blog, and follows his story on social media and beyond. We do not ask a lot, we know that in this day and age there are charity drives every week which are close to your heart but if you could spare just £1, we would smash that target and then some. Please donate if you can and share with others that might also be affected by this debilitating disease.

Thank you xx


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