Visiting relatives

hi everyone,i would just like to know if other ataxians are worried or anxious about visiting there relatives due to the ataxia.i have episodic ataxia type 2.im not constantly ataxic,but the smallest amount of stress will make me become ataxic.as a result of this,i cant even visit my family no more at Christmas time,or any get togethers.my wife is a Filipina who goes to lots of parties with her friends.i cant even go with her,coz I know that the stress of too many people or the excitement of it all will surely give me an attack.i feel left out sometimes.only the other week,we visited her friend and husband.everything was fine,until about 3hours had passed,and then suddenly my speech became slurred and feeling of giddiness followed.is there any of you fellow ataxians who have the same problem with visiting friends or family.........folky....

Hi Folky-oh, yeah, I can relate. It really doesn’t matter who/which relative, or non-relative, for that matter. There’s always the typical “obstacles” and then the stress (in my case) of how I’ve changed, others’ expectations, others’ viewpoint of how you’re perceived, etc.

The positive side: Stress of this type gets me to try different ways to try and manage it…and I can then use whatever works for other stressful situations.

i know exactly what you mean but I do it for my husbands sake. Just grit my teeth [not really] and go with the flow. I dont join in but generally speaking there is usually someone there who warms to me.

It helps to take baclofen beforehand - I normally take them in the evening.

patsy x

Hi folky, My heart goes out to you. I can certainly appreciate your feelings. I do not have all you issues but I do have some slurred speech it seems to be with certain people. Some I'm very good. others ???

people who don't know me well I avoid. I do have speech problems,drool, worst is when the wrong words come out.

I can't keep my eyes open to read so reading is limited . Most often I hear casual friends talking about book they are reading.Movies. Plus my memory is bad to . My family hasn't seen me with a walker and I"m dreading that

Good Luck, . lassie Elena

Family will accept you as you are!
Blood is thicke…etc
Regards
Barney

Hi folky! Yes I can relate.

1/2 of my relatives don't know that I am dependant on a walker. I don't know if I'd be more embarrassed to be seen or I'm too stubborn to ask for help (opening doors or helping me manage steps). Or is it that I don't want anyone to for sorry for me?

I missed going to a huge family reunion mostly because of my pride.

I used to love going out to eat. Slurred speech made me feel like people thought I had too much to drink.

Sometimes I feel like a hermit. I do venture out and I still work but then I rush to get home and back into my little, comfortable nest. I know I shouldn't hide myself out of the world like that but the world can be a cruel place sometime.

I go to house of close family -bro and stepmum they both have bungalows but others aren’t accessible to me. My closest friend visits with her kids only cos they known me since birth and my friends are deaf so the kids are used to speech that is different.

I don’t go out socially to meet strangers and have no interest in doing so. I have 2 dogs so have to walk them but I live in a village so it’s fairly quiet in day when I’m in field or park. A couple of times a year I might go to Asda or town but I have depth perception issues and find it difficult in crowded areas, and travelling in car gives me severe motion sickness.

I found it isolating at first but for me having a dog helped, as I hadn’t got around to kids before the Ataxia started.

My son and daughter ring twice as they know I'll be staggering to the phone and I often don't make it before the answer phone kicks in.People who know me well will phone again.Eliminates all those calls with people trying to sell you things.

Also I can't stay anymore as I don't like showers over baths for obvious reasons.II can't talk anyway so prefer to be at home where things are familiar and I know which bits of furniture to use.

Hi Folky,

Just last weekend I had a Reunion with my relatives that I didn't see for 5 years. I told the cousin with the biggest mouth, years ago that I had ataxia. The night we met I was so so nervous I was tripping all over. By the time everyone got there it was the best time I ever had. My slurring wasn't as bad as it always is. There were so many people in the room. I would put my hand on them to walk. They thought it was sorta a hug.Really that was the first time I felt ataxia was ok. I have went to parties that were overwhelming. but this one wasn't. I am learning with my kids. That you do what you have to.

Lori

I have ataxia 24/7, but I refuse to give in to it! I'm going to live my life, if it's the last thing I do! Is it easy, no. Is it worth it, yes, to me it is! My family and friends know I have ataxia, so if they're visiting, or if I'm visiting them, I make it easy on myself, as well as them. I've told them if they can't understand what I've said (due to my slurred speech), simply ask me to repeat it. I also spend a lot of time being a good listener, as it's amazing what you learn when you're not doing all the talking...,ha! Is it stressful at times, yes! And, yes, stress makes my ataxia worse! Somehow though, I survive! I usually crash the next day, after a gathering. I've come to accept that. One must do whatever makes them comfortable, but I don't want to miss out on things just because I have ataxia. Ataxia is very frustrating and challenging! I can't physically do what I use to do, but one of my favorite sayings is, "I may have ataxia, but ataxia doesn't have me"! I'm by no means being critical of anyone else or how they feel, but this way works for me! ;o)

Hiya folky just went on web &seen your discussion i can id 100 percent,and its hard to keep away from those type of places sometimes as i have 3 daughters 3 soninlaws &five grandchildren.i just love taking part in family life in general i mostly feel off colour when i go to their houses but seem to be able to keep the EA to mild symptoms,sometimes i do get the full blown EA, then its panick stations with everybody asking me if i need some water to drink.but as has already been said i refuse to give in to EA.around ten years ago i joined a self help cronic pain group with around 50 members,which about 20 attend twice a week their is nobody their with EA but they have all been to hell & back as far as hospitals doctors giving up on them almost i am sure a lot of us ataxians can relate to that.that same group has helped me meet other people and has become a big part of my life,maybe their is a similar group in your area i found this group through the local hospital. good luck take care my friend, frank'o

Hi folky. I have EA2 also. I get stressed out whenever I am invited anywhere, not because of the party, im worried about getting an episode. Sometimes I can get through it, others I cant. I wish I can give you advice on how to stay calm, but I need advice myself. Take care, and try to enjoy life.