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paula B

Active member
Jul 23, 2006
Since day 1 of getting diagnosed my world has changed. I went from driving semi truck to not driving. Everyday it seems i have people asking me,,can i do anything for you or get you anything? Do ya need this or need that? Please dont get me wrong. Its not that i didnt or dont appreciate everyone in my life,,its just i felt like everyone was trying to disable me to soon. Like they were trying to do for me what i could still do and what i wanted to do. Let me have my independence as long as possible.
Well now i am pretty much dependant on someone else for everything and it really makes me feel blue. I want my yesterdays back.
I recently got power chair and van with ramp.
The other night my sister and sister inlaw came and took me in the van to go shopping.
I dont know if its just me or if every als person feels this way,,but when i am around family and friends i feel like someone is always watching me. I almost feel like im on display and i dont like it one bit.
Ok so we get to the store,,,,the van door opens,,the ramp folds down,,i say to my sister and sister inlaw,,Do not follow me and away i went. I was totaly gone from them befor they even got the ramp and door closed.
So im in the store i am going here then over there looking at this then that. It was incredible. If i saw something i just stopped and looked. There were times i just drove the chair around up and down the aisles and around the store from one end to the other. The indepenence i longed for was back. I didnt have to say i wanna look at this or stop here. I just went. I felt so free so normal.
My sister and sisterinlaw said when we got back in van,,we couldnt have followed you anyways,,,they couldnt keep up. They did say they saw me a few times and that i had the biggest smile on my face each and everytime.
I must say,,,shopping at Kmart never made me feel so good before. Its a day i wont soon forget. It was the first day of the rest of my life.
My wish is for everyone to feel the way i did that day.

Paula, I am so excited for you. I can just picture the joy on your face. It is always great to hear happy stories. My husband doesn't quite need a wheel chair yet, but has to pick and choose what he uses his steps for each day as he wears out easily. He doesn't even want to discuss a wheel chair of any kind yet as it is another symbol of "giving in". I hear the same feelings and concerns you expressed about people wanting to help you, wanting to do things like you used to and being self conscious. Our grandson's 1st birthday party was last weekend and being the first on both sides it was quite a gathering. Dennis said he was sitting with an empty paper plate and everyone wanted to take it for him. He told me he really wasn't finished and wanted more food but didn't want to ask them to get it and was waiting for me to do it. He also feels like he is constantly being observed. Guess you just have to deal with each issue as you are faced with it. It is very difficult to watch the one you love struggle and also hard not to want to do for them. Hopefully we can keep finding a happy medium where we both can feel adequate. Thanks for your uplifting story and keep that positive attitude. Boots


Thanks for your story. It was great to hear and I am Happy to hear your positive attitude. The way you described your feelings about losing your independence and trying to keep it as long as you can, is so identical to my friend. She gets so frustrated if any of us try to help her when she trys to do it herself, so now I ask before I help her. She just had her first manual wheel chair experience last week while away on a trip, and she said that she was glad to go to where she needed so quickly, so another positive story. The one thing she said was that because she was so low, she often was omitted from conversations. I was so glad she told me, so that I will be conscious of that, when the time comes. She has spoken often, of people looking at her, and how it bugs her. It makes her feel weird when so many people are taking her picture all the time. Some things we can adjust, some we can't I guess.
Boots, The "giving in" part is very much a part of our lives too.

Thanks for sharing your thoughts. As much as this disease is different for each person, there are so many things the same.

Have a great night ! We don't have KMart up in Canada anymore, just Zellers and Walmart. :):)

Barb :-D
Boots and Barb,
I am glad ya enjoyed my little story. Sometimes all this sadness ya read in these posts can rip your heart out so if i can write about something and it makes someone smile then i am happy.
P.S. Dont be afraid to tell your happy story.

Great Story, Thanks

Barb, I appreciate you sharing your story. I've been there, done that.
The freedom to go where and when you want to is just great. Makes me feel like I'm accomplishing something on my own, just for me.

God Bless
Capt. AL
Aw comeon don
t anyone wanna share a fun and happy story with me?

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