Hello, I am Dustin, and Here's my Story

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Hello Everyone,

My name is Dustin, and I had a stroke at the age of 45. Long story short, I am a 22.5-year retired veteran of the US Air Force, and my stroke happened on a late December morning in 2022 as I was driving to work. I coughed a few times, I started seeing stars, and my left side went numb. I safely made my way through a traffic circle and parked under an overpass, but I didn’t know what was happening to me. Looking back, at that time I wouldn’t know what was happening if a stroke occurred in someone else.

I am from the US but was living in Germany at the time, separated from my spouse who is also from there.

I soon tried to raise my hands (right hand) by my driver side window to flag down any of the passing cars but nobody stopped. It is slightly difficult concentrating to describe all of this

I tried to rest a bit, hoping the numbness would vanish, but it didn’t. I called a co-worker who lived in the same village and tried to explain where I was but since half of my tongue was numb, I probably sounded like I was extremely drunk. However, she drove and was able to find me and called an ambulance to pick me up.

I was in the hospital about 3 weeks before being transferred to a rehab clinic.

I was in the rehab clinic for about 1 month before immediate family came and brought me back to California to recover.

Because the clot was removed directly from my brain, it left legions that showed as after effects such as:

  • Horrible short term memory (long term memory was fine)

  • Dizziness (to the point a walker was nearly essential)

  • Frequent extreme fatigue

  • Lines along the hospital walls appeared slanted and perhaps a little blurry

  • Balance was impaired and I fell a time or two in the hospital, but it luckily didn’t result in further injury

After about 2 weeks later while still in Germany, I was moved to a rehab clinic. I was given a room to myself very similar to a hotel room and I wasn’t expected to ring a nurse when I needed to get up to use the restroom so it was a step in the direction of making me self-reliant, to a degree. I was given a schedule of where and when to go for meals, rehab appointments, etc.

I lived in the rehab clinic for about a month before family came to Germany and brought me back to California to finish my recovery.

The after effects were still pretty extreme. As strange as this may sound, this is what I felt a lot:

  • When I got back to the states, I needed to reestablish myself with online accounts, but logins that I forgot were linked to my old German cell phone that no longer had service here in California. It was hard to focus on a computer screen in the first part of the day to find contact info for the organizations I needed to contact, but that inability to focus seemed to fade earlier and earlier in the day over time.

  • It was as if my eyes needed time to manually focus on things if I changed my field of view. It is way better now, but glasses help a lot

  • There was a near hesitance for simple tasks such as grabbing a door knob. I would feel it in my hand, but it was as if my brain was not sure if it was ready to be turned

  • With walking, it was as if every step was a surprise crash landing

  • Early on I had balance issues while standing on my right leg to put on clothing, etc.

Maybe some who are reading this know some of these symptoms first hand. It was tough to hear encouraging words from those who have not experienced it themselves. How would they know it would get better?

  • Extreme depression that this would certainly be the end of my marriage given how estranged it already was (how would my wife get along without me helping with any of the physical housework? And bills to be paid? And who would want to get back with me if there was a risk of this happening again? We were and still are civil) I cried a lot and still do at times, although that depression seems to be better later in the evening

  • When I walked from Point A to Point B it felt like my head was wooshing in a fishbowl that was balanced on my shoulders (this feeling did not vanish until sometime in April) (about 4 months after the stroke) It was in my opinion the craziest symptom I felt.

  • As a military guy, I was used to running but even a light jog felt like my head was bouncing on a trampoline

  • Both my voice and speech seemed slightly impaired to me although most everyone said I sounded the same. I think my speech sounded like a little kid. It seemed like I spoke in blocks of text that were mashed together without natural pauses. It’s better now although not normal and my voice has a slight Clint Eastwood raspiness to it. It could be much worse.

So, I’m still staying at my mom and stepdad’s. I feel a lot better (maybe 98%), but I’ve had little motivation as I don’t have an exact recovery timeline for things other than people telling me symptoms will get better with time.

  • At times I feel slightly disoriented as if I was shaken in a box and just let out. I can deal with that if it’s this way forever, but it would be nice if somehow that feeling would subside

I am more than highly qualified in my civilian profession of cybersecurity, and I’m frustrated at the amount of time gone by trying to get a job so I can get back on my own again. It seems to be taking forever.

If anyone can relate to any of this, I’d love to hear your thoughts or perspective.

Regards,

Dustin

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Everything you are feeling is quite normal for a stroke survivor. I can’t tell you that you will recover fully, but most people recover a lot of their former function. At less than a year post-stroke you are still a stroke baby, recovery is a marathon not a sprint. It is often one step forward, two steps back, it is only over the long-term that you will see improvement.
I don’t know anything about employment in the US, but hopefully you have contacts who can help you.
I know what it 's like to have a stroke in a foreign country. I had a stroke in Florida and was repatriated to the UK while I was paralysed on my left side which was interesting getting on and off the plane.

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Good morning @free3853 and welcome to the club no one wants to join. But you are here now and it sounds like you are making good progress, so don’t be too down and disheartened. Not even the doctors can tell you long it takes or how much you will recover.
There are several other Americans on here including @DeAnn, @Chlodog and @Outlander, I’m sure they will along in due course to welcome you also :smile:

I’m 2yrs post stroke and after a year I was going to strength & balances classes each week and in the gym 2hrs a day 3 times a week, and go walking with a rambling group. I’ve found my new normal and so will you. My balance is now near normal and I think all the exercise and rebuilding muscle I’d lost in that first year had a lot to do with that improvement. Cognition took about 18mths to recover but I still have a touch of Aphasia so speech is still slightly affected and still have foot drop…which is not too much of a hindrance now, particularly when I’ve got shoes on. But I can still experience that “crash landing” effect, you spoke of, from time to time.

I can relate to a lot of your symptoms; fatigue is another one that doesn’t affect me much anymore. My eye issue was more just delayed reaction time, the movement had slowed down but that righted itself in the first few months.

My son said there was a bit of a downturn in IT posts in general world wide after covid. It is supposed to be starting to pick up again but it has been slower than they thought. He’s a graduate and is looking for something in cyber security also and is having no luck either here in the UK.
For a little light reading you could have a look at this post several of us put together on “What we wish we’d heard at the start”. I’ve no doubt you’ll find a few things you can relate to in there. It might help in reassuring yourself that what you are experiencing is all quite normal and can improve further.
Welcome - what we wish we'd heard at the start - Community - Stroke Association Online Community

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@free3853 As Emerald eyes said, I’m an American living in New Jersey. I had my stroke Aug 2022. My hospital was too late in taking care of the ischemic clot in my brain. They waited too long, so I was in rehab facilities for about 6 months. I had right side weakness, but some movement. Double vision was awful, but is now much better. I could not swallow for a week and had a feeding tube for several days.
The first indication of my stroke that fateful day was horrible vertigo. The world was spinning and I called 911 for the ambulance to the local hospital. My wife was out shopping.
I read your symptoms and they sound familiar. I was doing great at the 6 month point: better walking and movement, with better eyesight.

Then…the awful “spasticity” hit me. 1/3 of stroke victims get this. Rigid muscles and spasms, often with pain.
Enough about me. Welcome to the forum. Read as much as you can here and you will find support, empathy, great ideas about how to better recover, and friendly banter.
By the way, thank you for your service. Please visit us often. A good site and these folks from the UK are OK!!! Very nice.
Prayers for you and best wishes. Work hard, never give up and always seek help.
Derek

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@free3853 Hi Dustin & welcome to the forum. As others have said a lot of what you describe is familiar. I’m pretty much 2 years post stroke & I still have issues with, walking, balance, dizziness, eyes, fatigue. Every recovery journey is different & it takes a lot of patience. No one can tell you how long your recovery will take as we’re all unique.

I hope you manage to get the job you’re looking for. Going back to work, if it is possible, is a good boost for mental health.

Best wishes

Ann

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Hi, Dustin @free3853,

I am from Indiana. 2 years post strokes and doing so much better, thanks in large part to friends on this forum, supportive family and friends here at home. No one can tell you how long it takes, or how much you regain, or if this will ever stop affecting you. However we are being real when we say it does get better. Some of that will mean finding new ways of doing things, taking better care of yourself–such as getting enough rest. Stopping when you are tired or overwhelmed, resting beforehand for things you have learned fatigue you.

Depression. Ugh! So many of us have it creep in. Be aware so you can get help if needed. And continue to speak with others who have been in (or close to) your shoes. They will be helpful in ALL areas. I cannot speak to my family and friends about my frustrations with them not understanding what I need or why. They love me and do their best. I love them and don’t want them to hurt. When those come up, I can come here for good advice, or just understanding. I am on EST but closer to Pacific Time than UK time. Feel free to message. I am thrilled with Zoom meetings as well. Will share info if you are interested.

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Hi Dustin and welcome. This forum and the lovely people on it have really helped me. I’m now nearly a year post stroke and boy I have to work at things . I too have joined exercise classes for strength and balance . I go twice a week and my balance is definitely improving. I practise other exercises daily and go for walks , trying to make them longer as I go. I still get wobbly and my legs sometimes feel like they don’t belong to me. Other days I feel more normal but I’m not back to the person I was pre stroke!! I’m hoping that one day I might wake up and just feel normal but I’m nt sure that will ever happen. We just have to look at the improvements we have made and set new goals. Mine at the moment is to get in and out of my hot tub but because it’s a bit slippy I fear falling over as I’ve fallen a couple of times already . Yay keep your chin up and do as much as you can and try to do a little more each day . Sending virtual hugs love Suzywong

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Yes, but remember Brunnstrom 's 7 stages of stroke-recovery, Derek

  • [Stage 1: Flaccidity]
  • [Stage 2: Spasticity Appears]
  • [Stage 3: Increased Spasticity]
  • [Stage 4: Decreased Spasticity]
  • [Stage 5: Complex Movement Returns]
  • [Stage 6: Spasticity Disappears]
  • [Stage 7: Normal Function Returns]

Wishing you a speedy move to the next stage !!
ciao, Roland

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Cool. Mine now has a slight South-African flavour. Never been there.

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One of the guys at my aphasia group has foreign accent syndrome as a result of his stroke. So although he is local born and bred he definitely speaks with a Slavic accent :smile:

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Hi There Roland: Don’t forget our very own “MinnieB” who has been going thru this spasticity for 9 long years…so one size does not fit all I’m afraid. ( Brunnstrom’s)
Again. I believe I am in that group of 1/3 of survivors. I am not quitting and try to keep up my spirits, but my spasms are slowly increasing no matter what I try. Don’t want to be the Grinch, but it is what it is. I’ve been at stage 3 for 6 months or more
Best wishes to you as well. Keep the faith. good friend.

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hmmm. me too. Life is hard for me too, but I can’t help thinking that we’re not able to see the whole picture. To do that, we need more time to see where it goes.
The possibilities are infinite, so why not believe in a good outcome in the long run?
Anyway, we’re not giving up by a long way, not yet.

Good luck, keep smiling, Roland

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@pando “Anyway, we’re not giving up by a long way, not yet.”
Yep, Let’s shake hands on it buddy. We’ll reach across the pond.

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Thanks Derek,

…and in 9 years you can tell me “I told you so” or I’ll tell you so !!!
meanwhile I’ll share every tip and trick that works (or half works)

ciao, Roland

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I saw a woman on tv who had a stroke, or perhaps another kind of brain injury, and now she sounds like a Chinese woman speaking English. Really bizarre.

I learned humility after my mother had her stroke. I saw my mother without clothes on all the time. I was forced to accept her odd behaviors, etc. My dad bathed her, but I had to help with her bathroom needs at times when dad was not around, even though she was physically capable of doing most things on her own. I cleaned up many bathroom accidents. Mother was just so mentally ill. She threw terrible crying fits with me at times when dad had to leave her to go run errands, etc. Sometimes, I couldn’t reason with her, and I would put my head down and cry. I was put through the wringer, and so was my dad. But, in the end, I became a different person. I’m not the Matthew I was before my mother had her stroke.

We are all the same in the end. We’re are fragile human beings who can have our lives turned upside down in a flash. We all smell bad when we don’t bathe; our bodies are all the same, in the end.

No one gets out of suffering. That doesn’t mean we cannot get better, however

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It’s called growing up Matthew :slightly_smiling_face: Nothing grows you up faster than caring for another’s health and wellbeing, their every need. Particularly when it comes to caring for our loved ones; and no matter how young you are, you become older and wiser for having gone through it.

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YES. That’s what it is: growing up.

I was in my mid 40s.

:

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It takes strength and courage to care for your mum the way you did. There are so many children out there who’ve walked away from that, ran away, left that caring to others, to strangers. You didn’t, you stayed! And you cared! Be proud of yourself as I sure your mum would be :people_hugging:

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Thank you so much! That was very touching. :joy:

I did want to run away many times, particularly in the second year. I didn’t know how I was going to go on caring her. But, our love for her kept us going strong.

I knew that she was proud of me and dad for what we did for her.

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I can totally relate to your experience of looking after your mum, Matthew. You will be rewarded one day for your loving care that you gave her. What is interesting is that I had a similar experience to you in many ways. I would never normally dream of sharing this story on a public forum, but I will do so today:

I caught my mum crying in the bathroom when I was 13. It turned out she was completely drunk. So I carried her off to bed, and this would become a semi-regular occurrence. It was upsetting for me, but I tried to get used to my new role. She was unhappy because she thought my Dad was having an affair at the office. Often I would have to dress her, and put her to bed, completely drunk. This went on for years. At the time, as far as I knew, there was no proof that my dad was unfaithful, and I would try to reassure her that it could not be so. Eventually, I began to question it, though, but there was little I could do but give her my love and support always. My mum was mentally fragile (at times she would even go to a mental hospital just for a break) and sometimes would have “random” fits and scenes, smashing things, crying and shouting. When my mum died at the age of 70, my dad quickly married his secretary that he met when I was 13. So, finally I came to the conclusion that her fears were justified. I cross referenced all my side of the story with my Sister, and realized how blind I had been. But my mum had sensed it all along: Mothers know best, and my mum was the warmest and most fun loving person I ever knew. She was a people person. As for my Father, he is no more, but his secretary lives in his house, and in his Will (rewritten shortly before his death) he left her most of his estate (which incudes the house). The nightmare continues to this day, because the Will allows her to occupy the house as long as she wants to, so the estate cannot even be split up yet.

The last part is perhaps unnecessary for me to add, but I tell it just to complete the story. I ended up being cross with my Dad (after he died) but my amazing wife told me to forget the whole business, since we had our own lives to enjoy. Now, after my stroke which I have shared, I might as well share this, Matthew, so that you know you are not the only one who had to support and look after his Mother. Even so, it is a heavy burden and a life changer, which forces us to re-evaluate life, love and kindness. We are fragile and need to be handed with care. Since my stroke, I’m literally not half the man I used to be, but I can give my wife everything humanly possible. Hopefully you have or will have someone you can love for the rest of your life

I hope this wasn’t too disturbing a read,
wishing everyone much love and care,
Roland

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