Last year, my husband was diagnosed with Lewy Bodies Dementia (LBD) which has been described to me as ‘the most common form of dementia that nobody knows about’. During this special week I want to share with you something of our journey during the past twelve months.
We met at Nottingham University in 1964, where he was a PhD student and I an undergraduate and we got married in1968. This last year has been the hardest and most challenging of our 52 years of married life.
The journey began last June when my husband told me he was seeing things. The following day, while driving through the countryside, he informed me that I had just driven through a hedge. Immediately I was on the case. After visits to two consultants and a couple of scans, in September we got the diagnosis of probable Lewy Bodies Dementia. The word ‘probable’ was included because LBD can only be diagnosed with certainty by an autopsy of the brain. As a result, it is often misdiagnosed. I soon found out that the condition was not known about because most people I told about the diagnosis had no idea what it was or how it manifested itself. Several of the healthcare professionals we came in contact with weren’t really aware of it either. As a result, I developed this word picture to explain what LBD is like.
‘Imagine a park with a team of gardeners watering the flower beds with hose pipes which are lying around on the lawns.. The park gates open and the public enters and wanders around at will, randomly treading on the hose pipes and stopping the flow of water. The gardeners do not know which pipes will be trodden on, when, or for how long making doing their job difficult.’
Lewy Bodies are tiny blobs of protein in the brain which block the messages from the brain to the muscles governing the various functions of the body. As a result, the presence of the symptoms is totally unpredictable.
My husband’s symptoms are very varied. They include dizziness, poor mobility, the occasional fall, problems with doing daily personal tasks, problems with his digestive system, confusion, problems with speech, slow cognitive processing, poor spatial awareness, and hallucinations.
You may have noticed ‘memory loss’, commonly equated with Dementia, is not in the list above. That’s because it is not usually present in the early stages of LBD.
Sometimes my husband can wash and dress himself, other days he needs varying degrees of help. Sometimes he can walk upstairs, one foot after the other, without even holding onto the handrail, other days he needs to use the chairlift. A number of times he has said to me ‘I know what I want to say but I can't get the right words out.’ After sitting for a long time, he can easily go dizzy and ‘be out of it’ for a minute or two, therefore needing support on hand so he doesn’t end up falling over. Circumstances can change hour by hour, day by day, week by week or any other length of time.
The intermittent presence of the symptoms has made filling in assessment forms for assistance and support both distressing and emotional for me. The guidelines say always give the worst-case scenario. Reading the completed forms was hard as the end profile was not a true reflection of the man I live with at the moment but probably gave a glimpse of what is to come.
The unpredictable nature of LBD also makes planning ahead difficult and Covid restrictions, preventing social interaction and going out, have exacerbated the situation. We try to live a day at a time adjusting arrangements as required. As we journey on, we are continually thankful for the love, support, and prayers of our family, our many friends and the church family to which we belong.
The main aim of the Lewy Bodies Society is to raise awareness, but it also raises funds which go to support research on LBD. This is vital for, as with other forms of dementias, there is no cure but neither are there any drugs licensed in the UK for LBD. Medications for other conditions are sometimes prescribed but have to be very carefully monitored as they can have adverse side effects for LBD patients.
You can find more information about LBD on the Lewy Bodies Society website https://www.lewybody.org
Thank you so much for taking the time to read our story. Please share it. I really want the word to be spread far and wide so that LBD ceases to be ‘the most common form of dementia that is not known about.’