Symptoms becoming Visible

[korra51]

Hello all!

I was wondering how you dealt with it when your symptoms become visible? Most of the symptoms remain invisible and only I can really understand what is going on other than being a little slower and more tired. But how do you deal with it when you your gait becomes very off or you even need use an assistive device. I am wondering because I know sometimes this goes away after a while but sometimes it continues to persist. It is almost as if the symptoms go back and forth between invisible and visible. Do you all have any thoughts or similar experiences to this?

[4boysmom]

I don't have a problem with symptoms being visible. In fact, I think it makes others around you a little more aware of what you are dealing with at any given time. At work, we try to go out on a nearby track and walk a couple of times a day. I'm sure I look silly going around a track with hiking sticks, but I can go farther with just that bit of assistance. I say it is far more important for me to keep walking, even with sticks, than to not use them and look more "normal".

[Reformed Yankee]

My symptoms were very noticeable right away. I now walk mostly with a cane and tire very easily. It took a bit to adapt to my new normal. I am fortunate to have a very supportive family. I was also fortunate to be in the military so that alleviated a bunch of financial uncertainty. Now I will retire in a couple of months and hopefully be able to enjoy life.

[PattiHNC]

It is what it is

My symptoms are very noticeable. For short distances, I use a walker, for longer distances, I have to resort to a wheelchair. I don't like the attention it draws to me, but it's either that or risk a fall, which I figure would draw more attention than the walker or wheelchair! I accept my limitations because I have no choice. If it makes others uncomfortable, I'm sorry, it just is what it is.

[thelegendlc]

Mobility aids ok

I have always had the philosophy that being noticed for using a cane, a walker or a wheelchair is far better than being noticed for falling on my face.

[ClearBlueSky]

My symptoms, especially walking, are very visible. I must use a device of some sort now.

In my experience, some people are very helpful. Others seem uncomfortable. I think it stems from not being sure what to do. That's fine. Remember, it's THEIR issue, not yours. Do what you have to do to make yourself safe and to feel good.

Like someone said, it is what it is.

[rdmc]

I have always had the philosophy that being noticed for using a cane, a walker or a wheelchair is far better than being noticed for falling on my face.

That's great reasoning...never thought of it that way before. I've only fallen once in public. Falling in front of your family is bad too because it freaks them out (freaks me out too because as I'm laying there, I'm trying to calculate if I injured anything.) Years ago my son's fiance (now wife) and I were the only ones at our house, and I just took one of those hard falls with no rhyme or reason...one minute I was up, next minute I was down and the flooring was cold, hard, tile. It scared her (and shook me up) and to this day, she is really tuned into making sure she does everything in her power to keep me from falling.

My gait is off, I use a cane, but someone would only notice that if I was up and about. Always visible is my slurred speech and the fact I look funny when I talk because only half of my face moves.

I've had people ask me about the gait issues (I give a nonchalant answer when I'm asked.) I've never had anyone (outside of my family) ask me about my speech. On the other hand, my family (extended family) don't hesitate to let me know my slurring is worse, or they're having a hard time understanding me. I can slow my speech way down and enunciate slowly and that can improve slurring to the point that they can understand.

Whether people notice the face/slurring thing, I have no idea. Maybe my grandma was more than right when she used to tell us kids, "Don't worry so much about how you look, everybody else is so worried about how they're looking they won't even notice you."