Do you mind if I share some good news about myself?

Thank you for your kind words, Jake.

You know, it's funny. I didn't set out to be a spokesman. But when people would hear my story, they'd tell me, "You're such an inspiration!"

Frankly, I thought they were just trying to cheer me up. But when SilverSneakers wanted to interview me, it started me thinking. I tried a couple of homemade videos and got some encouragement, so I've kept going. (I have two new episodes in the works.)

Along the way, I've learned a lot about what people *don't* know. Some think all strokes more or less alike; some think you recover quickly, like from a broken leg. And a lot more besides.

If I can inform/encourage/inspire/engage anyone who needs it, I'm happy. Besides, I need inspiration and encouragement too.

Thanks again, and feel free to share my videos with others.

@scottrl
Hi Scott,
Just curious, did you have a hemorrhagic or an Ischemic stroke?
Also did you have any seizures after your stroke?
Thanks Scott,
Jake

Scott,
Thank you so very much for your post. I listened to your video and thoroughly enjoyed it, as it was very informative.
I'll certainly check out your other videos. I admire your courage and ability to keep positive through your journey.
I appreciate you sharing your very personal experience.
Big hug is enclosed,
Carol

Thank you, Carol.

I'm glad you like it, and hope you'll enjoy the others, too.

Feel free to share them with others!

Hi, Leonard.

I had a lacunar ischemic stroke affecting my right side.

It was what's known as a "Pure Motor" stroke -- only my ability to move was affected. (Good thing I'm left-handed.)

I did not have any seizures, though for a while I had intense and painful spasms on my right side.

@scottrl
Hi Scott,

I hope this message finds you well. I recently watched the Mother's Day video, and it truly resonated with me. I wanted to reach out and discuss something you touched on regarding your physical recovery. It sounds like it hasn’t unfolded the way you had hoped, particularly with your challenges in walking.

I’ve been curious about your experience: have you encountered any stigmatizing comments related to your walking? Are there moments when you’ve felt any shame or embarrassment because of your condition? I ask because I, too, have faced my own struggles with epilepsy, and I know how profoundly stigma can affect one’s sense of self. Some feel the shame and embarrassment can sometimes feel insurmountable, and I can’t help but wonder if those same sentiments echo within the stroke community.

I think of a friend who has epilepsy, someone who chooses to remain indoors, shackled by the fear of experiencing a seizure in public. It breaks my heart to witness their isolation. I genuinely hope you are finding a supportive network as you navigate your unique journey.

Take care, and I look forward to hearing from you.
Jake

Hi, Jake.

I'm sorry to hear of your difficulties and your reluctance to walk in public.

Yes, I have experienced this. Not too long ago, in fact, I was hobbling my way through a store when some guy looked at me like I was a space alien or circus freak. Frankly, I wanted to smack him with my cane!

What can be worse is being treated like an idiot just because I have difficulty walking. When my wife and I have been places like a doctor's office, the staff will talk to her, not me, as though I am incapable of coherent speech. (My wife. God bless her, will say, "Why ask me those questions? He's sitting right here. Ask him.")

I try to keep in mind, however, that most people are quite kind and patient.

Overall, my embarrassment at being in public is decreasing. Part of that is telling myself, "Hell, I don't owe these people anything. If they're uncomfortable with my appearance, that's their problem, not mine."

Besides, I need the exercise. I am not going to wither and die just because some doofus thinks I walk funny.

Hello!
Why is it that we worry about what others think of us? I don’t have the answer.

I unfortunately, contribute to the situation. I admit it. I watch the way people drive, the way they roll their trash can out to the curb, the color of their house,
whether there is a WELCOME mat by their door and/or petunias in a flower pot.
Every observation and decision about those things costs me.
I’m exhausted from all this because it drains my energy. How stupid of me, I don’t realize that what I’m doing can be offensive to others and damaging to myself.

I do understand being judged, or the feeling of being judged by others because of the way I present myself. I have a disorder of movement . It’s Functional Neurological Disorder, or FND. When it started about 5 years ago, I would be walking through a parking lot looking like I was drunk. I feared someone calling the police to report me a drunk driver!
Now, I have to use a walker. My brain causes me to tip backwards when I’m standing at the cash register so I place the walker behind me. What do other shoppers think? I dunno, but I do care…

What does a person with dementia look like?
If I tell someone that I have dementia, the usual response is, “but you don’t look like you have dementia”. Hmm…but I do.