What is life like for someone with Lewy Body Dementia with Parkinson’s?
I have hallucinations – seeing, hearing or smelling things that are not there. Sometimes these are comforting but sometimes it can be frightening, like seeing strangers in my house. But the hallucinations are not the only thing that can be frightening. I get confused – including not knowing where I am or being able to think or speak clearly or quickly. I have problems understanding, thinking, with my judgement, and my memory; this is similar to Alzheimer’s disease but memory is less affected for me, so I can be one minute quite lost and the next quite lucid (this can be frightening and also means I understand what is happening to me until I pass). I can no longer read or write. I sometimes don't recognize you, even those of you who mean so much to me. I move slowly, I have stiff limbs and uncontrollable shaking. I can faint, I am unsteady on my feet, I often fall and can hurt myself. I need a wheelchair. I need help with everyday things such as washing and visits to the bathroom. My sleep is disturbed, I shout out.

When I enter the final stages of my life, I can’t eat or drink, and I am at risk of choking on my own fluids. I am still quite capable of understanding during lucid moments, I can still make a laugh noise when you share something funny but I can no longer speak. I am bed ridden but I can still hold your hand – I squeeze it gently. I have my eyes closed a lot, but I can still feel your love for me and move my lips to try and return a kiss.

My dad got diagnosed in 2013 with LBD with Parkinson’s. There are no treatments that can slow or stop the brain cell damage caused by Lewy Body Dementia, current strategies focus on helping the symptoms. Dad never complained once in all the years, including in his final very tough weeks.

Please give what you are able - in Colin's name - to The Lewy Body Society. If you give through this page the charity gets the money automatically - it does not come via me - and my company, EY, will match the fundraising total to give up to £250 more. 

Want to know more?
The Lewy Body Society was founded in 2006 to support research into Lewy body dementia and to raise awareness of the disease. Its aim is to educate the public, the medical professions and those in decision-making positions about the disease, which unfortunately is still not well known. 

Lewy Body Dementia (LBD) is a chronic, neurodegenerative cognitive disorder and the third common form of dementia but unlike other forms of dementia, people with LBD have Lewy bodies in the brain. Lewy bodies are abnormally-folded proteins found in the nerve cells of the brain. Patients with LBD may experience memory / cognitive problems, visual hallucinations, and Parkinsonism symptoms. 

Parkinson’s Disease (PD) is a chronic, neurodegenerative movement disorder affecting 1 out of every 100 over 60s. Parkinsonism refers to the motor systems that are typically associated with PD, you commonly experience muscle rigidity, changes in speech and walking, balance problems and tremors. Some studies show that having PD also increases your risk in developing LBD (most people don’t have both – my dad did).