The Social Media Outlet

[KennyInPA]

I recently noticed a search for AMN on YouTube brings up many videos of myself (along with other content on my YouTube channel, which is lottery/gambling related. It's a hobby haha). I started putting out videos last year talking about AMN and how it started to affect me. It definitely has helped me use it as an outlet which may also get to others who have AMN/ALD as well. I have met many people who show up on my videos or during a live stream who are confused about the condition because their medical professional also is confused. I try to lead them here and other Facebook groups. It definitely is an option to get it out there and I encourage others to do the same as it makes us one big voice.

I made this video for Raremark last year:

youtube.com/watch?v=NvM7hTE...(Not working as expected?)

Life with AMN - The Beginning:

youtube.com/watch?v=GHFTJke...(Not working as expected?)

My latest video a few weeks ago:

youtube.com/watch?v=Uks9wuC...(Not working as expected?)

[monkeybus]

You have outed yourself.

[KennyInPA in reply to monkeybus]

I reckon I have yes!

[COwithAMN Administrator AMN EASIER Volunteer]

Well done, Ken. I watched your videos and your optimism and positivity shine through. You are a great advertisement for how to deal with AMN, especially for younger AMN-ers. Thanks for taking the trouble to make us aware of these.

Chris

[KennyInPA in reply to COwithAMN]

Thanks Chris! I also try not to cover up any "TMI" moments of AMN as these things happen. As I referenced "my pee pee issues", hey you have to put it out there. Like most things in this community, including this forum, it's good for people to be able to relate.

[StevenSims in reply to COwithAMN]

Hi Chris, would you be able to send LessthanRich this link? I think it would be good for him to see someone positive!

All the best

Steve

[COwithAMN Administrator AMN EASIER Volunteer in reply to StevenSims]

Hi Steve

He'll see all our posts, so no problem with that. We can't stop him looking!

Best wishes

Chris

[JasonHarnum in reply to StevenSims]

That Cockroach is among us...

[SongStream in reply to StevenSims]

Steven, I was sent a link from Rich to his AMN blog and noticed that he is spreading misinformation about AMN by saying that:

It causes a long, slow, painful death, which can end in the most gruesome of ways.

[StevenSims in reply to SongStream]

He's a numpty! Look at the fuss he made about Michael!

[SongStream in reply to StevenSims]

As an American, I had to look this word up! (Apparently, it's Scotland's favorite word!)

[StevenSims in reply to SongStream]

Haha I'm Welsh

[StevenSims]

That's Brilliant! Well done thanks for doing these! Especially good for newly diagnosed to see!

All the best

Steve

[julie_]

Well done, indeed! Thank you for putting this - you - out there. There really isn't enough information for the community, especially in terms of our day-to-day!

[Klorda]

I have neuropathy in m legs. Medications doesn't help. Working out makes me feel so much better. Has the trial medications helped with your nerve pain? Some days are worse than others for me. I'm afraid since I'm not in a clinical trial, my nerves are being damaged continuously.

[KennyInPA in reply to Klorda]

Hi Klorda! I have noticed some slight changes from the "fire in the legs" and leg cramps at night since I started the trial. I'm obviously hoping what nerves are left the trial drug is helping preserve, but nobody will know and time will tell. I am taking daily doses of Gabapentin and I skipped doses when I was on a business trip and I noticed nothing different. I asked if I could stop taking, due to the trial they want to keep it constant. (Which makes sense to keep the results true.)

[Klorda]

I must admit I didn't give Gabapentin or CBD oil much of a chance. I felt loopy from both. Whether that was psychological or not, I don't know. I feel like taking something right now. Can I ask if any of your relatives were in a wheelchair?

[KennyInPA in reply to Klorda]

Luckily I didn't have any side effects from it, but again not sure if it is doing much these days. My oldest brother was in a wheelchair, but that was when he developed cerebral ALD. (In which he passed about 6 months after he went into the chair.)

[Klorda]

My nephew has AMN - 29 years old. He is currently in a trial at Kennedy Krieger. No cerebral involvement yet. He has bladder, sexual, gait and leg issues at this point. However, the drug he is currently taking is supposed to stop the progression of the disease. Let's hope it works.

[mjwellman]

Hi Ken, watched all of your videos today. I really admire the way you approach things and your general outlook on life; it’s really inspirational. Thank you for making these!

- Matthew

[SongStream]

I wish I had these videos available to me when I was diagnosed. You fill a void that is sadly lacking.

[Travzw]

I’ve had the urodynamics test done 3 times so far as “pee pee issues” are my worst problem in my opinion. First 2 went over well minus the annoyance of things being inserted! My third was the worst for some reason! Everything went well until the last catheter to empty all fluids from the test! It was me and the nurse that was emptying my bladder in the room. 20 seconds into the emptying I totally passed out! I was sitting up on the “toilet table” and woke up laying down again with 15 doctors and nurses surrounding me. Not a very pleasant situation!

[KennyInPA]

Sharing a new video I made today..

youtube.com/watch?v=n6XUoNH...(Not working as expected?)