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

It's all very well to talk about the power of vulnerability and the personal growth that can come out of that. You can have all the counselling that you need and want, and prepare yourself for your life and what may lie ahead of you. You can talk about being in The Arena  (see post on 15/4/25)  but sometimes and some days you can just feel sad. Today is such a day. My husband is more confused than is typical for him, he is aware of how confused he feels and he doesn't quite know what to do with himself. The combination of his own insight and observing him and helping him with his difficulty doing some of the simplest tasks with his phone is hard. It is just plain sad and there is no denying it. There is no point denying it. I am still in the arena but feeling a bit deflated and on my haunches, not quite ready to stand up again.  In the words of Ben Crowe and others, you can't control what happens to you but you can control your response to it. My response today is to...

  Having major surgery several months ago and being somewhat incapacitated for a period of time post-surgery, has made me reflect on our situation. Too often perhaps I pass off my husband's symptoms as a day to day issue and don't give sufficient thought to his life and how it feels to be walking in his shoes. Given that I knew I would recover (unlike my husband) it has made me think more about life for both of us if something significant happened to me. My husband is very dependent on me (not physically but mentally) for many day to day tasks. I have been physically dependent on him for several months.  As a carer, I am not alone in feeling the vulnerability of being responsible for caring for my husband but my own physical incapacity has made be feel what if the shoe was on the other foot. What if my husband had a further serious stroke (which the chances are that he will) and I need to care for him both physically and mentally. What would that look like and feel like for bo...

  Amyloid Spells: What are they? This is a term that I only recently became familiar with. If you do an online search you will probably come up with something like this   Amyloid spells, also known as transient focal neurological episodes (TFNEs), are brief recurrent neurological episodes that can occur in people with CAA.   They can mimic seizures or transient ischemic attacks (TIAs) and are often misdiagnosed. Amyloid spells are caused by the deposition of amyloid-beta protein in the walls of blood vessels in the brain, leading to vessel fragility and potential neurological events.   So .... this explain s a lot. My husband's new neurologist   explained these at his last appointment. When asked about what signs and symptoms he had experienced since the last appointment we discussed: Days when his memory appeared to be worse than usual Difficulty writing and/or reading Sensory changes in his face and arms Additional confusion when confronted with tasks Repo...

 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...