[R Knabel]

I really miss my “old” hand strength and I never had “trigger fingers” before………..I also miss being able to get up from a chair like a normal person, but it does provide a humorous moment for those that may be watching……….I also miss being able to hold my arms above my head for an extended period of time….it’s amazing how many home projects involve holding your arms up……….I miss all the sports I can no longer participate in because my stamina and wind are so short lived……..I miss being able to go up stairs without really any issues…….I miss having my body taking care of food going down the right pipe………I miss my peripheral vision……..yet, I’m thankful for every day as I know there are so many, in so many respects, who have it much worse than I………..it’s a new norm for me and I’m OK with that………if life gives you lemons, you make lemonade!!!!

[Ari]

I hate to hog the podium but in recent weeks my MG (both ocular and generalized) have been on the march. Until recently my ocular symptoms were annoying but not overly disabling. So I might have been a bit smug. But now I’m joining the club with severe pain in my right eye and blinding blurred vision and the right eyelid slamming shut and staying there for lengthy periods. And on the generalized side of the circus, I have graduated from a cane to a walker because I found it inconvenient falling down with alarming frequency. So, who’s to say where it ends?

[bmg]

Ari,

Don’t feel bad about expressing yourself. That’s why these forums exist. As you can see, some of my comments are quite lengthy. Haha! Kind of how my verbal conversations were before MG became my friend.

[Jodi Enders]

This is the place to let it all out. I’m really sorry things have taken such an unfortunate turn lately. We’re all in this unpredictable MG world together and we are here for you. How do you keep your head up on the hardest days?

– Jodi, Team Member

[EDWARD CLAGHORN]

Vision. I am told that blurred vision is not caused by MG. Double vision – I do not have double vision – is. Vision improves after IVIG not declines between infusions. At night I have to stop reading my book after about 30 minutes.

[Jodi Enders]

Hey there! I’m reaching out to see if you are interested in participating in a short volunteer community spotlight. MyastheniaGravisNews.com is looking for individuals to share a personal story (350–500 words) for our June Myasthenia Gravis Community Spotlight. You can write about any topic you’d like, just needs to be your original work and not published anywhere else.

The initiative of the spotlight is to highlight various voices and stories within the MG community.

Along with your story, we’d need three images to go with it (plus captions), and if there are any people in the photos, you’ll just need to mention who they are by first and last name. We also ask for one photo to be used as your cover image.

If you’re interested, just let me know! Ideally, we’d need to receive everything within the next two weeks.

If it’s not your thing or the timing’s not right, no worries! I appreciate you taking a moment to consider it 🙂

Jodi, Team Member

[LIZ]

I read this discussion topic after completing a 2 hour presentation at work. There was 20 min break built in but still by the end my voice that started strong was almost completely gone. After standing for 2 hours, I sat. Once the adrenaline kick passed I felt as though I was going to collapse. My limbs seem to weigh 50lbs each. My jaw hurts and it takes effort to keep my mouth closed. I used to be able to teach all day or run around handling high stress and high volume court calendars. Now one short presentation is too much. I have a long list of work to do but I think I need to go home early today. So what do I miss? I miss being able to decide what and when I’m going to do what I want to do. I’m stubborn so I still push, but the truth is that it’s no longer up to me. MG now decides what I can do on any given day.

[Lsura]

I miss the ability to plan my day, complete my “to do” list and be spontaneous to engage in social activities with family & friends. I found out quickly that MG is very unpredictable!

[Jodi Enders]

What helps you cope on those unfortunate days when plans change unexpectedly and last minute? – Jodi, Team Member

[paul spychalski]

VISION!

[Mama]

I had posted some things before that I missed, but now I have one to add. It is reading. After I read for a short time, my eyes start jumping and watering. My neurologist went into an explanation of why this is happening. Sometimes it is hard to read the messages on my phone. I have always loved reading and this is frustrating.