Cerebral Amyloid Angiopathy Symptoms: Let's talk about it.

 Compassion and Connection can come from surprising places. Some time ago I presented to Accident and Emergency with mild chest pain. I was not concerned but thought that it was prudent to have it checked out as we are always being told. I was not surprised that my cardiac function was fine.  The staff did a couple of other tests and while waiting for the results of these, one of the A and E doctors came to see me to have a chat. I mentioned that my husband had Cerebral Amyloid Angiopathy and I had recently started taking an anti depressant and that it was probably just some physical manifestation of mild anxiety. What did surprise me was his reaction when hearing of my circumstances. He took one look at me, went and shut the door to the cubicle and pulled up a chair and said to me with such sensitivity "that is a horrible, horrible disease". Most medical and other practitioners that I and my husband come across have never heard of the condition. Not only did he immediately u...

In 2024, the Australian Bureau of Statistics reported that there were 3 million carers in Australia representing 11.9% of all Australians living in households. The contribution, generally unpaid or underpaid, of families who care for a loved one is overwhelming when looking at the statistics in Australia and beyond.The lived experience of every carer is different. Over many years there are a lot of organisations that have been established to support carers in lots of different ways. When my husband was diagnosed with CAA, and as it continued to impact his and our lives, I looked for avenues that potentially could assist me and where I could share my experiences. But where....? There are support groups for people with aphasia and their families, support groups for people who care for someone who has had a stroke and support groups for carers of loved ones with dementia.  All of these were relevant in part to some of the issues that I was dealing with. However, none of them really re...

A resource from Leigh Sales Leigh Sales introduces her book by saying “ the day that turns life upside down usually starts like any other. You open your eyes, swing your body out of bed, eat breakfast, get dressed and leave the house, your mind busy. As you close the front door behind you, rarely there is a tingle of unease that something is off. Later, when the story of what happened next comes to be told, it will start with the day’s ordinariness, something that will now seem incredible. How could a blindside so momentous have struck on a day that began so unremarkably ”.(Sales (2018). Any Ordinary Day . Penguin, p. 1. Random House) I cannot imagine a statement that captures any better the feeling that crashes in on you when you experience a traumatic event in your life. Everyone says (sometimes quite flippantly) that you have to “make the most of every day” but unless you have actually experienced a life-changing, traumatic event, I don’t think that many people actually can live...

Symptoms may not look like a stroke My husband woke up one morning feeling a bit dizzy when he got out of bed. He started to vomit soon after and couldn’t keep anything down all day. I assumed that he had some sort of gastro. The vomiting continued and I was concerned that he was becoming dehydrated. So, I took him to hospital. Much to my surprise the A & E doctor, after examining him, was doubtful that it was gastro-intestinal in nature and was of the opinion that he’d had another stroke. The CT scan showed nothing and he was kept in hospital over night, given some anti-nausea medication and hydration, and discharged the next day to have an MRI a few days later. The MRI (his first one for a couple of years), revealed that he’d had a stroke in his Cerebellum (hence the vomiting and reduction in balance) and a further six recent strokes in addition to many more microbleeds since his last MRI. The radiologist was somewhat perplexed given the number of bleeds and it took him a long ...

Other symptoms of CAA So, we have all probably heard about the symptoms of a stroke to watch out for. The acronym FAST comes to mind. Look for weakness or sensory changes in the FACE and ARMS, particularly on one side, difficulties with SPEECH and act quickly (TIMELY) to seek medical attention. This message looks different for someone with CAA. Of course, if these symptoms occur take the same action as advised because the person may have had a significant bleed in the brain. However, smaller bleeds and microbleeds look very different. How might these manifest themselves in symptoms that you can see? The answer is they may not. You and the person with CAA may be completely unaware that they are having one or more microbleeds. However, my experience is that you might notice:             They are more fatigued or more confused than usual or they report feeling “a bit off”. A higher degree of agitation or impulsive behaviour but nothing...

  What I have learnt about CAA The small micro bleeds that are part of CAA are often present in the brain before they cause any noticeable symptoms.   These microbleeds are generally only able to be identified by an MRI scan. A CT scan will only pick up larger bleeds or strokes. The amyloid plaques are not in the cerebral tissue (as in Alzheimer's Disease) but are located within the blood vessels in the brain. This makes the blood vessels more fragile and prone to bleeding (haemorrhagic strokes). Most information does not tell you that these plaques can also lead to blockage of the blood vessels (ischaemic strokes). There is no known cause (although there are current numerous studies into this) and there is no cure and there is no treatment. The only "treatment" is to ensure that the person's blood pressure remains well managed. The person will generally be advised to avoid taking any medication that is a blood thinner eg aspirin, ibuprofen, naproxen. The amyloid p...

In the arena of being a carer Over the years when I have found times to be tough, I go back to thinking of the quote "The Man in the Arena" but of course these days it would be good to re-title it as "The Person in the Arena". Theodore Roosevelt many years ago captured beautifully the courage of the person in the arena who "dares greatly", sometimes over and over again. Being "in the arena" is hard work. Sometimes you feel strong and can roll with the punches but at other times you feel like curling up in a corner of the arena and just taking a rest. Other times you may need to exit the arena temporarily or for a longer period but no one can ever say you didn't give it a crack and you can take pride in the fact that you were not one of those "cold and timid souls" who prefer to point the finger from the sidelines. What does this have to do with CAA? It's a tough job as a carer and tough as your role changes from th...

MRI and Cerebral Amyloid Angiopathy While my husband was in the Stroke Unit they were able to compare his MRI results to those taken two years earlier. It showed a substantial increase in the number of microbleeds throughout his brain in the last two years, all of which had been apparently asymptomatic. Of course this raises the question of how can you have a stroke and not know about it? In CAA it is common for microbleeds to occur without the person or their loved ones being aware of it. It's only when you do an MRI that you can see them. They generally don't show up in a regular CT scan. The image above shows a typical MRI of a person with CAA. So what is your approach and that of your medical practitioners into the future? Given that there is no known cause, no treatment and no cure, do you really want to have 6 monthly or annual scans to prove the deterioration of the condition? What purpose does that serve? We decided, in conjunction with his specialist, that there was li...