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Hi. I'm 27 years old. I had strokes when I was 23-25 that affected my cerebellum and occipital lobe. I do not have "muscular weakness as such but difficulty in all voluntary movements including moving your eyes and speaking. All these voluntary movements would be accompanied by tremors only when you start the movement and not at rest. Occipital lobe involvement means that there should be some impairment of the visual faculty." (Quoting a friend). And all of the neurological conditions, mostly strokes, were because of a now removed AVM. I had my first stroke when I was 23. I had a boyfriend for about a year after that. We were together after my second stroke, but not for my third and final in 2015. I have been single for over three years. Yes I know I have a lot to be grateful for, a lot. Is there any advice for dating post-stroke? Where do I meet people?! At "regular" social environments I am disabled. I'm having trouble figuring out what is realistic for me also as far as disclosure and making thingy are known to the other person. What is a good guideline for what, when, and how?
 
Thank you!
Christina

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Christina

That is a tough question and would have to give that some serious thought but all I can come up with now is don't look for love it will find you.

Good luck

Ed

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Christina ,

 

I have similar visual issues and have not even tried to date. I live in a resort town so in the off season most people down in my Irish town go to bars. I used to go before but now I don't drink, the sound and crowds completely make me disoriented to the point I get sick.  I believe being honest but always worried about scaring guys away.

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15 hours ago, worryisamisuse said:
 I have been single for over three years. Yes I know I have a lot to be grateful for, a lot. Is there any advice for dating post-stroke? Where do I meet people?! At "regular" social environments I am disabled. I'm having trouble figuring out what is realistic for me also as far as disclosure and making thingy are known to the other person. What is a good guideline for what, when, and how?
 
 

like you're in my mind . I've been divorced for , I think 3 years, I say I think for time has no relevance to me anymore 

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Ya Ed, thank you.

 

Kelli: Tell me about your visual stuff? I'm still learning about mine. Bars... I used to live (moved recently) near one and got help there from some regulars. I drank a few times there, but with balance issues already, I learned...

Ya, I don't really know how much to disclose. I am/was complicated with this who suffered a SCI 11 years ago. There's a lot I share with him. But I KNOW that isn't always the case.

 

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Just my two cents, I think you should share with them as much as you like as the journey continues. If it's everything then awesome but if it's just a few details then that's okay too. If the person truly has feelings for you then the worst news shouldn't run them off and if it does then you did yourself a favor. Have faith it will turn out great and that's all you can hope for when trying to have a relationship with someone. 

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Ya, for already known partners. "In sickness and health", right? I just don't know the how, what and when especially when it's already new and awkward...

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well.. I have Nystagmus in both eyes  but worse in my right eye. Both eyes have a downward turn left bounce. the right eye makes it so I can't even see clear for it moves so much. so imagine jumping on a trampoline and try to see something. Always moving. I'm going to see another specialist for a contact lens that will block out the sight so I'll only see out of my left eye. I'm doing that for I see more still on that eye. I take Gabapentin to help with the bouncing as well. Having my eye issues are troubling for not only is it my eyes but the nerve that runs down the right side of my face also twitches and inside my mouth my palate jumps   https://www.youtube.com/watch?v=Qg0ZSG06nzI   ( this is a video of my mouth)  

So the balance: your eyes, and balance work hand in hand so since I have visual problems my balance is like I'm 3 sheets to the wind. Before the stroke I used to drink guys under the table in liquor.. but now, with my medicines, I know I can't say no to myself so I won't drink. Because if it goes down smooth, you know it will be a bad night lol 

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Thank you for sharing the video. I feel like we have a lot in common. Yes every brain and every case is different, but I also have nystagmus. I got glasses for the first time less than three years ago: with prism lenses, stick on and then ground in. I cannot remember if I have had it since the first stroke, and it just got worse with the progressive strokes? I think. I have dysarthria that started after stroke two. I have a hand/neck tremor that began after stroke 3. Because of complaints of mine about the tremor, I was on gabapentin for short time, but I quickly got off. I am wary of side effects, like seizures. I am on no pharmaceuticals. I use a wheelchair and walker to ambulate though. Oh ataxia.

 

For vision and dating: I tend to stare some because it takes me time to focus... :/

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On ‎1‎/‎20‎/‎2018 at 11:18 PM, worryisamisuse said:

Thank you for sharing the video. I feel like we have a lot in common. Yes every brain and every case is different, but I also have nystagmus. I got glasses for the first time less than three years ago: with prism lenses, stick on and then ground in. I cannot remember if I have had it since the first stroke, and it just got worse with the progressive strokes? I think. I have dysarthria that started after stroke two. I have a hand/neck tremor that began after stroke 3. Because of complaints of mine about the tremor, I was on gabapentin for short time, but I quickly got off. I am wary of side effects, like seizures. I am on no pharmaceuticals. I use a wheelchair and walker to ambulate though. Oh ataxia.

 

For vision and dating: I tend to stare some because it takes me time to focus... :/

Do you head tremors when you try to look a certain way? I found , the reason I had them and still do is mainly for the muscles are trying to go the way they know how to go .  If I look, just with my eyes, a certain way my head shakes back and forth.. painful. After surgery to align my eyes and hopefully would stop the bouncing. It did for my left eye, or at least lessen it by 85%. Unfortunately, my right eye wouldn't stop bouncing. I have a nerve issues that runs down my right of my face. Granted, the nystagmus wasn't going on at the onset of my stroke. Doctors tell me that is common. Why? Who know but it is. Moreover the palate in my mouth started.. frankly I'm not sure for I don't remember. I didn't even know until an eye specialist pointed that out to me (( If I already said all this before somewhere sorry.. I don't remember so its all new to me.. explaining that is)) 

Gabapentin- https://www.drugs.com/sfx/gabapentin-side-effects.html  I do not have seizures but this this quiets the brain and nerves that makes my eye bounce.. not fully, for me but by 60%.  I'm going to have a contact lens , here in a few weeks, that blocks out my vision so I'll only see out of one eye. That's the only option for me , blocking out my vision, to have a mostly steady world. 

Some people have had success with muscle therapy ,either through an eye doctor though some health insurances don't cover it but not that costly, ( I had AmeriHealth at the time but I think Medicare covers it. To bad I didn't have that.. mine starts in July '18) though for the nystagmus, depending on the severity, those therapies won't help with that but with the prisms, it may. (( according to http://www.chop.edu/doctors/binenbaum-gil (( Love this man)) 

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On ‎1‎/‎20‎/‎2018 at 11:18 PM, worryisamisuse said:

For vision and dating: I tend to stare some because it takes me time to focus... :/

Totally understand this 

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You sound like a very lovely person and I am sure that you will find a good partner.  Having disability and social situation is a tricky business.  By social, it is interacting with others (dating, resuming your career, family/friends, etc).  It is tricky as "others" may not realize that you are disabled.  I am in similar situation as I look normal in the outside but I was horribly dizzy (much improved now thanks to a miracle medicine), abnormal eye movements (like Kelli) and weird night time vision.  So, disability was always on my mind.  I found that there are a lot of social groups that you can join based on your interest.  (Church groups, hiking clubs, literary groups, etc).  This way, you can connect and make friends with similar interests.  They will understand your disability and accept you who you are.  In this environment, it makes it easier to date or just making new friends.  In my case, disability definitely affected my confidence but my motto in 2018 is perseverance and resilience. 

 

BTW, I am very familiar with AVMs as I am a ruptured aneurym survivor. (VA/PICA rupture)

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Update: I have been dating someone for a couple of months.

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On 1/22/2018 at 11:17 AM, 2Fight said:

It is tricky as "others" may not realize that you are disabled.  I am in similar situation as I look normal in the outside but I was horribly dizzy (much improved now thanks to a miracle medicine), abnormal eye movements (like Kelli) and weird night time vision.

Yay? A lot of my stuff is pretty obvious.

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Well, I have been given a chocolate bunny by a gentleman of 86, and we share a conversation or two, he says he gets a chair for his lady, when I show up for activity,And he has given me some art work. He is the dearest, with stories of his great love,his wife.

 

I was asked to be a "girlfriend", and this blind stroke survivor has a harem of friends who respect and adore him. While I said no to the traditional role, I have been in love with his love of life, and love of others. He sends messages,or has someone wheel him to my door, and I stop by to sit for a chat. He is proud of the zoo of stuffed animals that were received from those who adore him.

 

We are a sort of family here, this group of strangers, in an institution.

 

But my heart was touched most by a man, hardly older than me, who came here dying of cancer, but was blessed with remission, and he went home in January. He lives a bit far, but he promises a visit. We saw one another around, in dining hall, but on one occasion, I observed him sitting alone enjoying eating something with great enthusiasm. Curious, and happy to see him, I stared. Then he pointed to the food, And mouthed "do you want some?"

At the prospect of sharing good company and good food, I said "of course" so he walks better than me,so he brought over some remains of a rotisserie chicken. It was like a pot of gold!  After a few heavenly minutes, my conscience urged me to ask, did someone give this to you? He cheekily replied, it's ours now.

 

So apparently someone left a good portion of chicken, and he did not want to let it go to waste. We enjoyed our pirated treat together. It later drew us close as the chicken thing that never would end. The real owner of the abandoned chicken wondered where her leftovers went.....apparently the kitchen dining staff were unaware, and one of our mutual friends had bought it and was awaiting payment for it. So it got complicated, and was a good laugh, and he never knew it was happening until I told him later that I had offered to pay the chicken owner,but she was friend I helped regularly and would not take it, and was upset at the staff for leaving her chicken. But no one noticed while we were eating it, so guess no one was aware leftovers needed wrapping. No matter because I bought Chinese to share as usual, but the story floated, and I never did reveal my chicken pirate but here nothing is hidden.

 

So the last time we spoke on the phone, he said, Shall I bring a chicken when I visit?? We shared a laugh, and he told me that it was a perfect memory of  good time because he had good food,good company,and good conversation. I agreed. 

But I suggested Pizza, and he agreed that from the perspective of inside here, a good pizza is Nirvana.

 

oh, when it comes to romance, I think it boils down to perspective.

There are many types of love. 

 

Today a nurse told me I was like her sister. I felt loved, and agreed.  I call out in pain hurrying her, she barks wait Im busy, and I know she will not forget me. We share inside gossip. 

 

My soul feels full of love, friendships, but different, outside the realm of sexual liaisons.  The healing hug quite separate from the exciting sexual adventure. 

 

I am full of memories, loss,sadness attached as a footnote. But here I do not miss those days. I  am in a new place.  I love in a spiritual realm. 

 

 

 

 

 

 

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oh, I forgot my point...I enjoy meeting new people in a live stroke support group. We will have a social next month,to kick off summer. And I am refreshed by the conversations, and some handsome men who survived just like me coping. And I have visual stuff, nystagmus,an eye patch for a while, the pretty slip on the glasses type I bought online, in many styles to match clothes, but easy for me to close my right eye as I do now. I have only slight strabismus, but they not work together well. I want to cover the dumb eye, but everyone says they can't tell, doc says not enough to surgically correct.  So heye, some eye make up on occasions, and I am good to go. One of the nurses got me going on new fad again of false eyelashes that look natural. I wore to a dinner,women loved them, men said what?

I hate bright lights, colors now seem right again but I lost sense of color after stroke which I hated. No one sees my visual problems so I get no support. Reading is difficult. I color but I have my nose in the book, people think I sleep. I cannot see TV well, so I prefer movies on small devices, so I can see details. 

I have sensitivities. I wonder how compatible to anything I can be now. But I enjoy still.

 

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