Does MS cause you to feel isolated?
 

I seldom interact with people for any length of time. There are a number of reasons for that, all MS related. My hearing is pretty bad. Even with hearing aids, I sometimes have trouble recognizing speech (I swear some people just mumble), and if the person is speaking rapidly I can just forget about understanding. Also I lose words while speaking, which is terribly embarrassing, and I stutter a bit while fishing for them. I never stuttered before.

Now there’s a new reason for shying away from people. If I engage in a conversation with people, I can be fine one minute, and the next minute – even while I am speaking – I completely lose my train of thought mid sentence. Sometimes I can’t remember the point I wanted to make, and sometimes I can’t even recall what we were talking about, though that is usually while I am having a hard time fishing for words. When this happens I am MORTIFIED.

I used to be a very effective speaker, both person to person and when giving major corporate presentations to large audiences. Now I limit my verbal communications for fear of appearing like an idiot.

Does this ever happen to anybody else?


P.S. - Of all the things I’ve lost in life, I miss my mind the most. ;)

That bugs me a lot too, when I forget in mid sentence what I was talking about or the point of it. And it happens too often. I laugh it off but it frustrates me to no end. I was never a good public speaker but in high school my English teacher told me I could put more impact in fewer words than any student she'd ever had. Those days are long gone. :(

MS itself, or simply the fact that I have MS, does not make me feel isolated. It is the intentional acts of others that do. Particularly when they claim it their intent to end isolation.

I think I isolate myself do to the MS. I mean, I get embarrassed about how I walk and how I talk. When we had company for my bday some weeks back, I basically just sat in my recliner and just listened to everyone talk. I felt it was safer than stumbling around with my walker or trying to find the right words to talk. I tried to call everyone for dinner and when I did, I wound up yelling at everyone instead and my one friend gave me a very nasty look. Im not so social anymore. Its not what it used to be for me. :(

I refuse to isolate myself because of this damdable disease..Hurumph.:) I do however have an anxiety disorder, so I avoid a lot of situations that may trigger that. Prozac helps now but I still have my moments.:eek: :D

I forget or lose my train of thought or stumble over words and my hearing has diminished some (I say huh a lot:rolleyes:), but that's me now, take it or leave it. MS, AGE, ME all rolled into one chubby older babe.:D

Marion,

I have that exact set of symptoms among the many others. And the same history of being a very good public speaker.

I discussed this w my MS Specialist a few years back and was referred to an excellent Rehab Hospital. I saw the head of the speech department. They thought I spoke pretty well, unfortunately. They deal w stroke and brain injured patients who take months to speak in eye blinks or pointing to word charts. Of course, I looked perfect to them.

Recently, another MS Specialist has told me that there is really nothing to be done. If anyone does know, Marion and I would like to know, too!

ANN

Well, Marion, sometimes I "feel" isolated, and sometimes I isolate myself on purpose. Is being isolated healthy? I think not. Do I usually care? No.

I have a laundry list of issues that make socializing uncomfortable for me, and cause me to opt out: pain, bathroom urgency, cognitive problems (that pop up unexpectedly), fatigue, inability to stand OR sit for long periods, anxiety, and more.

Everything has to be lined up perfectly for me to feel up to peopling (my pet word for socializing).

Of course, I find myself in this crazy tug-o-war, thinking: "Nobody ever calls me...oh no, the phone is ringing, I don't feel like talking! Nobody ever comes to visit me...oh no, there are people at the door--what do THEY want? I don't want people to treat me 'special'...wait, why aren't they making concessions for me, don't they know I'm siiiiiiiiiiiick?"

How can I be with people? I can't even get along with myself!! :eek:

Marion - :hug::hug: I do understand the isolation that you feel. It can be rough. It's hard when we can't go out and about like we used to. However, I refuse to be isolated. Like, B2Y, things have to be lined up just right for me to go "peopling.":p Most of my socialization is with family, friends, and neighbors. It's no where near as much as I used to but it is something. And, if I lose my train of thought or can't think of words or can't remember what was just said, I really don't care that much anymore. I know perfectly healthy people who do that all the time.

I don't know what to suggest to you. I know that where I live they started an MS group that does more social things. They recently all went to breakfast and bowling. (Of course, I was in the tube while they were all having fun.:p) Anyhow, at least in this type of situation, everyone understands the difficulty(ies) you may be having and vice versa.

Mostly I embrace my isolation. I have a hubby who works sun up to sun down and more. He keeps me from being totally alone.

I have no children, and my siblings aren’t very good company (IMHO). But I am really most comfortable in my own skin when I am alone. And the Internet really helps a lot, too.

I love my Neurotalk friends, and on one of the other BBs that I contribute to I have friends that I have known for fifteen years. Internet friends are wonderful in that you can get personally close to them without the danger of having them show up in your driveway some Saturday morning.

Is this much isolation healthy? I think it is. Perhaps it wouldn’t be so good for a person with a normal life, but I don’t have a normal life. The lifestyle of a disabled person isn’t conducive to making loads of friends, and for me it feels normal.

Even though I’ll probably only have ten or so people at my funeral, I don’t think at that point that I will care. I’ll be sitting on a pink cloud, sipping a margarita, and savoring my life’s wonderful memories.