Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 : I can't remember how much this disease has effected you physically, but if you can tell them how you feel. I remember when I first was diagnosed my daughter asked my sister-in-law what do I do for Mom, her advice was " do nothing, if she need you, she will ask for help " . If your able to make your own decisions, then by God you do it, and tell them. I have a wonderful story to send to you, it might help, I will sent it to you direct. Good Luck! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 please send the story, asap. A Breaux mabreaux@... -- Re: being invisible? : I can't remember how much this disease has effected you physically, but if you can tell them how you feel. I remember when I first was diagnosed my daughter asked my sister-in-law what do I do for Mom, her advice was " do nothing, if she need you, she will ask for help " . If your able to make your own decisions, then by God you do it, and tell them. I have a wonderful story to send to you, it might help, I will sent it to you direct. Good Luck! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. It's better to have Laugh Wrinkles than Worry Warts! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 They tried that with me too...or at least my husband did. My daughter takes me wherever I want to go. It is your body and your health. If you let them tell you " you can't do that' " ... you will get it in your head that you can't...and t hen you really won't be able to... You have to keep moving. Rest is good...if you over due it ,,,your body will tell you so immediately and you will have to take a day or so and do nothing but rest. I have been diagnosed with ALS. I still walk with a walker and braces. I have conceded not to go down the basement stairs. I know I still could get down their if I have to...( go down on my butt and back up the same way).... I haven't been to the upstairs either in a long time. What I have lost is the ability to get up into my van. I stopped and started letting everyone else drive me and stayed in the house all the time during the winter. I am working on getting back into the van. I figured it out....I have a wooden box that I can step on and then step into the van.... I just need my husband to build me the correct type with some kind of a handle on it that I can reach so I can take my box with me... There is always a way to do something....you will work it out. Your family will need time to adjust to your limitations and abilities... Stay strong... Sherry Ketzbeau Lindenwood Acres http://lindenwoods.tripod.com/index.html ---- Original Message ----- From: Breaux To: PLS-FRIENDS Sent: Friday, April 04, 2003 11:39 PM Subject: being invisible? Question: I have just had an exposure to my family and close friends where Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 , Let your body tell you what you can do or not do, not your relatives.......I may not be able to do some things but is I think about it long enough I always figure a different way to get it done. Like moving the sofa to get those dust bunnies. I cant push it away from the wall standing up but I can get down on my butt and pull it away from the wall. It may take a few minutes crawling from oone end to the other but my God I moved it!! Were there is a will there's a way. Some people need to adjust to your disabilities it will take time for them to accept it. When I was out shopping with my daughter one day a lady stopped us and asked about my walker. She did not address me only my daughter. She never acknowledged me so even the fact that I was walking I guess she thought I was also deaf, go figure!! Some people are afraid of us I guess they think they will catch what ever we have!! Just do what ever feels right for you until you are not able to do.................Flora Brand Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 This is a normal occurance with me, and if I am out along they will ask anyone standing nearby. For some reason, I find this funny... A Breaux mabreaux@... -- Re: being invisible? .. She did not address me only my daughter. She never acknowledged me so even the fact that I was walking I guess she thought I was also deaf, go figure!! Some people are afraid of us I guess they think they will catch what ever we have!! Just do what ever feels right for you until you are not able to do.................Flora Brand Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 , You will have to be firm in telling your family and friends you will do what you can for yourself for as long as you are able and if you feel you need help you will say so!!! I tell people this a lot and some are finally getting the message. What really cooks me is when I am accompanied to a doctor's office or other place by a daughter or a friend and the receptionist acts like I have no ears, tongue or brain and address all comments to them instead of to me!! My daughter was furious and refused to answer their questions. She MADE them talk to me. Hang in there, I guess they have a lot to learn the same as we do. It sure has given me a different perspective on how I treat others. Blessings, Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 Here Here!!! I can speak for myself, thankyou! A Breaux mabreaux@... -- Re: being invisible? , You will have to be firm in telling your family and friends you will do what you can for yourself for as long as you are able and if you feel you need help you will say so!!! I tell people this a lot and some are finally getting the message. What really cooks me is when I am accompanied to a doctor's office or other place by a daughter or a friend and the receptionist acts like I have no ears, tongue or brain and address all comments to them instead of to me!! My daughter was furious and refused to answer their questions. She MADE them talk to me. Hang in there, I guess they have a lot to learn the same as we do. It sure has given me a different perspective on how I treat others. Blessings, Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 HI ALL, EVERYONE THOUGHT I WAS JUST PLAIN LAZY BECAUSE WHEN DON WAS IN A MANUAL W/C I ALLOWED HIM TO PUSH HIMSELF. COMING FROM WORKING IN A REHAB SETTING I KNEW HOW IMPORTANT IT WAS FOR HIM TO DO WHAT HE CAN FOR HIMSELF. HOW MANY TIMES PEOPLE CAME UP TO PUSH HIM SO HE WOULDN'T HAVE TO. DON HAS FOUGHT FOR EVERY INCH. HE STILL WALKS WITH THE WALKER FROM HIS BED TO THE BATHROOM AND THEN TO HIS W/C. SOMETIMES HIS LEGS JUST WILL NOT MOVE AND WE END UP MOVING THEM FOR HIM. HE HAS AN AID FOR 2 HOURS IN THE MORNING AND WE START EACH DAY WITH RANGE OF MOTION AND STRETCHING EXERCISES FOR HIM. HIS LOWER EXTREMITIES ARE PASSIVE (MEANING THAT WE DO THE MOVEMENT) HIS UPPER EXTREMITIES HE IS ABLE TO DO ACTIVE (HE DOES THEM) WITH SOME DIFFICULTY BUT HE DOES THEM. YOU TAKE THE BETTER ART AND HOLD THE WEAKER ONE AND MOVE THEM TOGETHER. DON'T FORGET HAND & FINGER EXERCISES. BY THE WAY DON DOES NOT WALK WITH OUT SOMEONE HAVING HOLD OF HIM. WE BECOME HIS SKY HOOK. KEEP PLUGGING AWAY. FIND ANYTHING TO DO. INCLUDING HELPING AROUND THE HOUSE. DON WILL SOMETIMES FOLD TOWELS WHEN HE FEELS WELL ENOUGH. LOVE BONNIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2003 Report Share Posted April 8, 2003 thit happens to me all the time, so I'll just sit back and reep the results of your question. I hope you dance again, Donna > Question: I have just had an exposure to my family and close friends where I > am sure they have forgotten that I exist and are only dealing with the out > words appearances of the disability I am suffering from. They are starting > to make decisions about what I can be allowed to do and this is completely > intolerable to me.I am still me inside this body although the body and me > don't get along very well anymore, my cognitive skills are completely > unchanged. > > I must stop this downward trend before I lose complete control does anyone > have any suggestions. > > > > A Breaux > mabreaux@e... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2003 Report Share Posted April 8, 2003 Vivian, We were talking about this at the Spring Fling. Rose Thomson said a lot of times at a restaurant they will look at her instead of listening to Ron when he is ordering. She will tell them he is doing the ordering. I have the same problem but Lois will usually wait to see if the waitress is really trying to understand me or if she just turns to her right away. Many times they will just turn to her with a blank look on their face and not even try to understand me. If they really try to understand me and can't she will help. Another thing is we tend to talk loud. The louder you talk the louder they will answer you. Where do they get the idea that if you talk loud you are also hard of hearing. They say there are three things you loose when you get older. Your mind, your hearing, and the third thing I don't remember. It used to brother me in restaurants when people turn their heads when you talk but not any more. Ugie didn't seem bored at the dinner Saturday night. The stories they were telling about their husbands. Lois asked me on the way home do you think that Vivian and Ugie are sisters? Now I know. It was nice meeting you two. M. L. Message: 3 Date: Mon, 7 Apr 2003 18:01:08 EDT From: VivCrouse@... Subject: Re: being invisible? , You will have to be firm in telling your family and friends you will do what you can for yourself for as long as you are able and if you feel you need help you will say so!!! I tell people this a lot and some are finally getting the message. What really cooks me is when I am accompanied to a doctor's office or other place by a daughter or a friend and the receptionist acts like I have no ears, tongue or brain and address all comments to them instead of to me!! My daughter was furious and refused to answer their questions. She MADE them talk to me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2003 Report Share Posted April 9, 2003 M. , Ugie and I sure enjoyed meeting you and Lois --- and all the other new friends --- at the Spring Fling. Ugie was so impressed with everyone. She thought she'd be bored but she's been telling everyone what a great time she had and how much fun PLSers are!! She loved watching Shira Glassman looking up at you and Vaughn as you talked. She is a little angel and was looking in adoration at you two. We were tired when we got home but it was a happy kind of tired. We are sisters-in-law, but she's more of a sister than I've ever had. She takes me everywhere. Blessings, Vivian Quote Link to comment Share on other sites More sharing options...
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