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Living with HIV


Jeff Potts reports "from the left side of my stroke"

Monday, 24 October 2016 Written by // Jeff Potts Categories // Social Media, Activism, Gay Men, Jeff Potts, Health, Living with HIV

"I'm stubborn and determined!" Recovering after last week's stroke, Jeff Potts checks in with friends and family.

Jeff Potts reports

Editors' note: for those who are not aware, our friend, HIV advocate and contributor Jeff Potts recently suffered a stroke which caused more damage than originally thought and has left him with what could be a long road to full recovery. Jeff is still in hospital but on October 21 he checked in on FaceBook to let us all know how he's doing. Here's what he wrote.


Greetings family and friends… from the left side of my stroke! (forgive the tome)

I know that Paul, my mom and my sister have all tried hard to keep you posted as my recent stroke situation unfolded, so I won't go back in time with details that you’re likely familiar with already (and many of which aren’t really crystal clear to me anyway).

Yesterday and today (so far) have been particularly good days, all things considered. It's all relative I suppose… whatever a good hour or good day looks like now, I’ll take it! I’ve found myself enjoying a particularly extended period of lucidity and sustained awareness over the last number of hours, so I thought… Carpe Diem… take some time to connect with and update my most-extremely-awesome family and group of friends – all of you!

Seems that improvements in terms of my right-side deficits have plateaued for now. While paralysis to my extremities and face relaxed fairly quickly through the first several days following the stroke, it looks like I’ve leveled off now at 4 out of 5 (where 5 is fully restored). I regained movement, speech, and elasticity gradually until I reached this level 4, but, it seems, the remaining deficits will likely stay with me for some time (so says my Neuro-Team - an amazing group of docs, nurses and therapists!) I’m not visibly “droopy” anymore unless I’m really tired (I’m told). I'm still not walking very well - definitely not without a walker and an assist, but that will improve with time and therapy.

The feeling in my legs is almost back to normal, but not the strength or stability... especially when I'm standing up. But that will come. And, I still have some trouble looking up or straight ahead when I am upright. Not only does looking straight ahead when I'm on my feet send my blood pressure and heart rate way up, I get dizzy, I feel sick to my stomach, and my legs stop working! It's hard to figure out... but we're working on it. I also have some sustained trouble with "motor-mapping". I know what going backwards means, for example, but I don't know how to do it right away and it takes my brain a little while to process what it is I'm supposed to be doing with my limbs. It's a very strange feeling... and it's frustrating.

I am more-and-more lucid and aware as time goes by, but I still have moments of significant lapses. Particularly if/when I am tired (which happens very easily and often), I experience heavy brain fog with confusion, disorientation, loss of logic and thought processes, etc. It's not lasting as long anymore - thank gawd - and it's happening less-and-less frequently now. So... I think that will fix itself with a bit more time. I keep asking my Neuro-Team how long they think I will stay ‘stupid and dazed’… I hate when the fog comes and it takes me an eternity just to understand that someone has just said “good morning Jeff”… and then the time it takes for my brain to register the words I need to say “good morning” back… and to know exactly how to do that. Weird… but thank gawd it hardly happens now. Apparently, in the days immediately following the stroke, I made no sense at all and could barely think at all… so I’m improving… one day at a time.

The biggest issue is the internal damage in my neck and throat. I am still unable to swallow, so I am still being fed and watered artificially by way of a continuous feed-tube in my nose (which is slowly starting to irritate and break down the nasal tissue). The Neuro-Team is trying to remain (and keep me) optimistic that my right pallet will rise again and that the paralysis in my swallow muscles will relax... but it may be a very long time before I'm able to swallow enough to lose the tube. The docs are waiting until Monday (maybe Tuesday) before they decide what to do next. It is probable (at this point) that I'll be scheduled for a surgical procedure during which they will insert a quasi-permanent feeding tube direct to my stomach through my abdominal wall. They will be able to take it out at some point down the road, but it's also designed to stay in permanently should my swallow reflex not return (which is possible, but unlikely).

It was confirmed yesterday that I was approved for a rehab bed (at a different hospital - to be determined), but the waiting list is at least two weeks long and the clock will only really start when my Neuro-Team submits my feeding plan. While there is a slight chance that I’ll have to transfer back to the Queensway Carleton Hospital (where I was initially taken by the paramedics from home), it is hoped that I'll stay here at the Civic until a rehab bed opens up. At this point, it seems unlikely that I'll be transferred before November 4th... but we'll see - could be sooner, could be longer. After that, the maximum stay allowed in the rehab facility is 49 days. So, IF I need the whole time there, I should be home by about December 22nd or 23rd. I'm going to work my ass off to be home much, much, much sooner... but for now I have to take it one day at a time and not get too focused on how long or short my full recovery will be.

Everyone tells me that it could be a year before I feel right again. I plan to work hard to cut that time at least in half if I can... I'm stubborn and I’m determined!

So... there you have it… the very latest. I don’t mind admitting that it took me a long time to piece this note together, but I’m excited that I had the wherewithal to get it done.

I will NEVER be able to express how grateful I am for what I’m told has been your incredible support and expressions of well-wishes. I’ve been able to read some of the wonderful notes that have come in, and I will slowly get through them all and will start to respond in turn… I promise… but it may take me some time. I am overwhelmed and truly humbled by your care, your compassion, and your kindness. What you’ve all shared with me, with Paul, and with my family I will cherish always. I may be a bit brain-damaged right now… but I am acutely aware of how privileged I am, and of how grateful I am for the richness that each and every one of you bring to my life and my world.

Thank you, with deep respect and sincere affection always.