Dinners with friends and family

[klazien]

Sitting at the dinner-table with others is getting very difficult for me. I choke very easily which is embarrassing in company, I can’t use a knife and fork anymore because my left hand is so useless and my back hurts a lot when sitting up straight for a while. We just had our Passover Seder dinner and thanks goodness it was a very small affair. We always used to have it with a large group of people but never anymore. Thanks to being tired all the time I don’t miss it either.

[wobblybee]

Hi Klazien,

I was dreading my daughter's wedding, knowing I was going to have to seriously

concentrate and talk to strangers, in strange surroundings, and eat in front of

them! Involuntary swallowing of saliva, not just food can set me off. I tend to

just use a fork at home, I hate having to cut anything up, people get peppered

with stray bits! My husband just asks if I want them saved for later!

Beryl

[Fifa Volunteer]

Hello Klazsien

Eating and drinking in company is something I try to avoid. At home I have a special plate and use a spoon. The tremours in my hands come and go, so I never know what I will be like.

Take care

Fifa

[jomo50]

Hi Klazien,

I know it is difficult, but you need to get out with others. Maybe have a friend or spouse who will cut up your food for you and don't be afraid to tell others you have a problem. Don't avoid others, if they are decent people they will understand. I have the same problem as you, but it doesn't stop me going out to restaurants and parties. It's all in the mind. Think of yourself first, not what others might be thinking.

J

[klazien in reply to jomo50]

All my family and friends know about my ataxia but even though I can’t help it and everybody understands, I find it unacceptable and don’t want to feel pathetic. No matter that I am being told not to feel that way, it is a loss of dignity. I don’t care about what strangers think but it is different with friends and family. Mentally I feel like before and equal to anyone else but physically I am not. You are right that decent people will understand but there is an element of pity.

[silkwood]

I just drop things on the floor.Lucky doggy.

I go out regularly but coffee goes everywhere including down hand washed jumpers and posh wooden tables.

My hands wobble so much that I can't even clutch a biscuit.We laugh but I know my dignity has gone.

[february]

Hi Klasion, You've probably heard all this before, but my speech therapist tells me to take tiny bites, swallow with my chin dropped toward chest and take tiny sips of water between bites. This is what I have to do as I cough a lot too! I agree with what Jomo50 said, maybe someone can cut up your food (my husband cuts up certain foods for me). Also tell others you have some problems, unless they already know. Also, you may prefer to eat foods that are easier to swallow. Take comfortable food with you (I do this if need be). You can buy weighted utensils on the net (Google eating utensils for the disabled). Use a fork in your right hand if your able, as you say your left is useless. For your back, if a cushion helps, take one with you to put in your chair. Lastly, enjoy yourself and don't worry about what others think. If they love and care about you, they'll understand! If not, that's their problem...,ha! My best to you..., ;o)

[klazien in reply to february]

My speech therapist has told me the same, but not the bit about drinking water between bites. I have learned never to talk while eating. I only eat fish and chicken now because it is softer. And I have a weighted fork/knife. All that is ok for at home and I don’t miss eating with lots of others.

[tazimo]

Hi Klazien, I'm wondering what type of ataxia you have as you are are like me, my food chokes me so I dont like going out to eat (or drink) I dribble down the side of my mouth, my right hand is useless and is painful, using cutlery hurts my hands, I'm bruised all over from falls. I DREAD TO THINK WHAT THE NEXT SYMPTOM WILL BE.I wish I had the confidence of others to be able to go out in public, I feel people looking all the time, and I'm like a dog with fleas- shuffling around cos my shoulders and back are killing me from sitting in the same position. And of course-- thinking i'm p..sed. My best wishes to you.

[klazien in reply to tazimo]

My kind of ataxia is unknown and does not seem to be hereditary. My right hand trembles but that is manageable. The left one has an uncontrollable, unpredictable shake but doesn’t hurt.

Only my back hurts. Long before the ataxia I had an operation to the spine to take some off several vertebras. Then I built strong back and abdomen muscles that acted as a corset. Now all that muscle strength is gone so standing and sitting upright for more than a few minutes, hurts. I am using a pillow but that doesn’t help.

[edic]

Klazien

I know how you feel. I have SCA6 and live in Seattle.

Luckily I have good friends who feed me. In general, I find that most Americans, the public, shops, buses and restaurants are most understanding; I have never been accused of being drunk. If people have a problem with my clumsiness, then they, not me, have the bigger problem! It's not that I don't know how to behave; I can't.

Edward.

[klazien in reply to edic]

Also in the Europe I have found everybody to be kind and helpful. Sometimes too helpfull. And I have avoided restaurants.

[wobblybee]

In addition to the problems currently being discussed, for a long time I've had

difficulty with low lighting in restaurants etc. As soon as I enter somewhere

like this it immediately alters my perception, awareness. I become really

disorentated, it makes me agitated and I can't relax and enjoy being out in

a social environment. I can be like Jekyll and Hyde within seconds.

So crowded, badly lit, noisy places, in fact everywhere considered 'social'

are off putting.

Obviously, it all depends how an individual's ataxia affects them, not everyone

finds the same situations difficult.

I feel guilty because it prevents my husband enjoying a lot of simple pleasures.

[jomo50]

Hi Klazien

Like wobblybee I often feel guilty of depriving my wife of many simple pleasures, but she reminds me of all the good times we had before my ataxia and that we still love each other, regardless of my problem.

I also agree with Edward, that although we have a disability problem, it is other peoples problem if they have difficulty with our clumsiness.

So Klazien, Get out there and believe in yourself.

As I write this, my wife is out at lunch with some friends, but tonight I am out for a pint with some of my male friends.

J