Di has Aphasia caused by Migraines

My experience with aphasia and a tribute to my late husband, who helped me through the trauma.

In December 2021, my beloved husband of 20 years died suddenly at the age of 71. It was a terrible shock, of course, but the biggest thing for me was losing my rock, the guy who understood me, the beautiful soul who was patient and kind.

In 2000 I separated from my first husband after 25 years of marriage. It had been a traumatic marriage for various reasons. The great thing was I had three gorgeous children. I battled the effects of post-divorce, but I could feel that inside, the stress was building up, especially knowing that I had to soon face a court case. My health was deteriorating as I tried hard to balance work and home life, plus this court case.

In January 2002, I met Stuart. A fabulous guy, a widower who was just the kindest laid-back person you could imagine. We dated and spent time together and soon found that we were compatible. I found it so different and reassuring to have met a man who loved me just the way I was.

In February 2002, I had a so-called ‘mini stroke’. I was in the hospital for a few days. The Doctors couldn’t work out what was wrong because my blood pressure was very low, and the scans were clear. I had lost a bit of my speech and was very confused at times, but I soldiered on, ignoring everything, determined to keep working. However, by April I was feeling very jaded.

In May 2002, I went to Court. I took the day off work and sat with the lawyer. I was feeling very ‘headachy’. Halfway through the court procedure, I suddenly felt very unwell, everything went blurry, and my head spun, and I lost my speech. I tried to tell my lawyer I had to go; I felt unwell, and he told me to stay there and be respectful. As soon as the Court was over, I staggered out to Stuart and collapsed. He took me straight to the GP, who sent me to the hospital. This time, the doctors were sure I had had a stroke, even though the scan was clear again, and my blood pressure had dropped to 90/50. My left side was completely paralysed, and my left side of my face was numb. I had aphasia.

I asked to be released from the hospital, I couldn’t stand the bright lights, and the noise was phenomenal. I had no speech and had to write everything down, and my eyes had tunnel vision. I went back to my GP, who was very concerned. She was convinced it was not a stroke and sent me to a Neurologist friend of hers, who diagnosed a Hemiplegic Migrainous’ stroke’. Everything presents as a stroke, but it is not the same.

I had to give up my great paying job and all of its responsibility, and now, at 47, I was this pathetic woman who couldn’t walk, talk, drive or hardly live. My GP managed to get me into the Rehab Clinic as a day patient. So most days of the week, Stuart drove me over and waited while I had physio, speech therapy, etc. He was on shift work at the airport and so often had his sleeps in the car while I had my treatment. My biggest problem was that with the aphasia, I could only verbalise a few words and point and gesticulate. Many of the words started with ‘eff’.. so was a bit of a shock when I was out that this woman was ‘effing’ all the time. Not once did Stuart ever growl at me. Instead, he patiently took my hand and led me to a seat as he knew when the ‘effing’ started, I was very tired.

We went to plant centres sometimes three times a week. He gave me a $20 note and told me to buy what I wanted. He trailed as I trawled the aisles for plants that I thought a little different. Plants that looked sad, like me, that needed a bit of love. I poked under grotty tables and down the back amongst the rubbish for plants. That’s where I found some sad Clivia that matched the ones at home but were different. I had ideas of propagating them. So about three times a week, I went trawling, often in the rain and cold in gumboots holding my $20 note. How blessed I was to have Stuart, who patiently let me do my thing. He could see that it calmed my electrified brain, but most of all, I didn’t have to communicate or speak to anyone, so there was not that stress.

After our jaunt, I would go home and watch Noddy on TV. It was the only programme that I could watch without my brain wanting to explode with pain. The migraines at this time were hideous, only the painless ones but with intense pressure and blackout or tunnel vision.

The frightening thing in all of this is that I lost my friends and some family. They didn’t know what to say or how to talk to me, so they avoided me. I was assigned a speech therapist who visited me at home. She told me that she didn’t believe the Neurologist’s diagnosis as I presented as a ‘regular’ stroke person with left-side paralysis. (I have no idea what a ‘regular stroke person’ is? To this day, I have not met one person who has had a stroke who is the same as the next!)

I got a new SLT who understood my issues, personality, type of brain function damaged and adjusted the programme to assist.

I  joined the Clivia Society, and they wanted me to be Secretary. OMG, I hid that I couldn’t write, but for some strange reason, I could type no hassles; words just flowed. If I spoke, rubbish came out, often like a foreign language. But I got there in the end. Stuart and another clivia enthusiast would preview my newsletters and information I was sending out. As my reading and comprehension improved, so did confidence in myself and my ability to accomplish things,

I never worked again, but my hobbies changed, and my interests and passions took me to meet all sorts of people.

We had built a fabulous house in Karaka in 2010, but we sold that in 2015 when Stuart retired and came down to Tauranga to a retirement village. Stuart was able to be a volunteer at Classic Flyers, and I perused my love of 500 and went to Regionals and Nationals.

I am very grateful that today, 20 years on from when I had my first ‘stroke’ and suffered aphasia, I’m doing ok. I am now on meds to prevent migraines, but from time to time, especially when tired, aphasia kicks in. Left side weakness has improved but has never gone away.

It’s little steps. The biggest problem is that I look normal, but my brain is at times addled, in a restaurant, crowd etc. Dealing with the bank lately has been difficult. 2x 1.5 hr sessions standing is exhausting and tough on comprehension.

So with my darling husband gone now, I have to learn to muddle along on my own. I miss the kind, generous laughing man that he was, Always there with a cuppa, but most of all recognising when I was tired and needed to rest up. I will miss you, RIP Stuart.


Extra thoughts:

I do want to emphasise that AphasiaNZ will assist and welcome anyone with aphasia. I have appreciated their input and assistance. AphasiaNZ recognises implicitly that aphasia is not always due to ‘a stroke’.

Ensure a medical practitioner checks any aphasia.

All in all, be kind on yourself. Plan your week, and don’t get upset if you can’t do something. Use your aphasia card if you have to.