Old 03-30-2005, 11:46 PM #1 (permalink)
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Default Support system needed.

Dear pals and cals,
i have a favor to ask you and lord please give me the intelligence to get this down in writing so it can be understood. today was a bad day for tim and it didnt turn out that great for me either since i am tims support system and we got bombed by health care. monday night tim had a fall while he was putting away one of his precious albums and hit his head he tried getting up resulting with rug burn on his knee and also needed to use his life line bracelt to phone the paramedics to come help him up. they checked him over and everything was all right but head wounds do bleed profusley, no stitches though. of course this was all reported so we had the nurse the socail worker and the home care aid at his house today. i understand they were just doing there job but it was very disturbing.
construction in his house is taking a little longer then anticiapated so his bedroom will not be done proably for another 2 weeks or so. once he moves in there then i will move into the exisiting room. they told him they had accomodated him enough and that if i did'nt move in soon he would be going to a hospital or a home for safety reasons.
tims spirit today died a little i think and it was sad to watch he didnt thnk the fall was a big issue and he also doesnt think when he chokes on little pieces of food that this is an issue either. he knows this happens and hes in control of it but one home care worked gets scared and now the social worker doesnt want to put her in that position. result puree his food yuk. no way and i told them they could at least try mincing or maybe try a different diet before taking the extreme. they also brought up a feeding tube and i had to leave the room. tim is still far away from needing this and after going outside to get my composure back i went in and talked to tim in front of them all and said its time for baby steps again. i asked him to remember when this all started and how he had to make changes that were hard but he did and had Dealt with them up to this point where he is comfortable with them and now we need to try new things.i really felt he was under attack today and when he cant really express himself because of his speech i find it very unfair.
tim doesnt have a support system all he hears is what the medical people are telling him and me. his freinds no nothing about the disease and i was wondering because you are so all in tune with what you are going
through and how far your disease has progressed if you could give him a little hope by writing him so he doesnt feel he all by himslef with this thing.they are ready to put him in a hole by fall and if they continue on with this depressing news everytime they go visit he is going to give in. they scared him today and they scared me. he needsto know there areother people out there that are sufering from the same thing he has and are amking it and still have that positive outlook on life that i know deep down he still has but if this negative behaviour continues i am going to lose my best freind becasue he is going to say f*+^% it., and its too damn early. so this is my favor could you write him whether you are a pals or cals and give him support this town just doesnt have it. you dont have to mention my letter just how long you have had als and where your at and things that maybe work for you and give him some hope and i know this is asking a lot because you are all going through a transitional time in your lives now too but i need help and he just cant keep hearing from me.timserhan@hotamil .com i would appreciate this so much.
kim
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Old 03-31-2005, 01:59 AM #2 (permalink)
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i sent him something today at 2:45 am. hope he got it.
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Old 04-01-2005, 08:15 AM #3 (permalink)
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Kim, i'm not sure i have anything to offer in regards to your specific request. however, it sounds like you need a little extra support today too. i'm sending an online hug your way. sounds like you have been doing a great job with your advocacy with tim. keep strong and stay encouraged. melissa
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Old 04-01-2005, 05:20 PM #4 (permalink)
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Hey kim,

i dropped a short note to tim. i hope He is encouraged by tHe support that is being sent his way. you truly are such a good friend to him, and i hope He knows that. how are you doing? haven't felt much like talking yet, but i know that i will be soon. do not forget about me and tHe kids. we still need all of your support and will for quite some time yet. let me know how things are. love ya..... hugs to you and melissa.

love, carol
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Old 04-01-2005, 09:44 PM #5 (permalink)
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i sent tim an email telling him there would be mail coming his way so he wouldn't delete it. he proably wondering whats this woman up to now?some of yo may owonder why doenst he jsut get on the forum but without any movementof his hands or arms he cant type. he doesnt have one of those new gadgets yet but we are trying. i think it would help if he could express himself to others.so i am his hands, his instigator and about the only one who understands als so far in this city. amazing isnt it and i dont know much! al thank you so much for your support i havnt spoken to tim but i dont see why he wouldnt of got your message. me thank you for the hugs i need them right now because the husband is acting up right now in fact he said he was calling a lawyer for a divorce today. he didnt but if thats whats in the cards right now i dont care selfish people cannot change. i think it was just another threat to get his needs met or to scare me but i'm not scared i have better things to with my life and that is looking after another hman being who truly needs the help.
carol how did i know you would step in like i told you on the phone you arent getting rid of me and my support will always be there whenever you need it. i 'm thinking of saving up some money so i can come visit . what do you think about that.i dont know how far i'm going or what the cost is but since i think about you all the time i want to see the real you and put my arms around you so you can feel the warmth i've tried to display in my letters. maybe after tims ordeal is over i might move. maybe sarnia is a place to go. i havnt nothing here that is holding me back.i sent a letter to the als foundation in regina and asked them if they could help me get an appointment with dr strong. they told me he already sees a dr hayder in saskatoon and he is proably just as good as dr strong but if i can get a referral they could help with some part of the money. do you think this is a good idea?has anyone heard of a dr hayder? i know hes very good at sending the rilutek every month because tim is still on the testing program and its free. tomorrow is tims steak night i hope we do well, i even got safeway to donate a basket so we could raffle it off. i belive they owe me something for the way they treated me.we have 200 steaks and i'm sure they are all sold i think we could of had more but oh well trial and error. unfortunatley tim does not want to go in fact he doesnt go anywhere i believe that is going to change when i move in.
again i want to thank you for your support and maybe this will bring a smile to tims face agian. i love you guys even though its just been through mail , you truly are good people.
love kim
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Old 04-02-2005, 07:09 AM #6 (permalink)
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Kim - that's too bad about your husband. i thought i remembered you saying he was supportive of this. or, does it depend on his mood? steak night....mmmm....i admit, i am a steak & potatoes girl. i love seafood and most other food, but i can't pass up a good steak if i'm in the presence of one!

carol - don't worry, we'll never forget you. you have been such a support and encouragement to me you will be in my heart and mind forever! i even printed up a couple of the emails you sent me so i could reread them when i'm feeling down. you just take all the time you need and let us know when you are feeling more like talKing. i"m so thankful for you that you have your family around. i'd love to meet you face to face also, so when you feel up to company, Kim and i will be the first to visit.

hey to everyone else! the weather is warming up, i see small signs of spring....time to come out of hybernation! there hasn't been much conversing going on here and i hope it picks back up soon. melissa
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Old 04-02-2005, 09:12 AM #7 (permalink)
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Hi received an email from tim tHis morning and He did receive tHe 2 emails from al and carol. it already sounds like His spirits Have lifted a little. its amazing wHat a little support and Hope can do. as far as tHe Husband goes it could be His mood but Hes not bringing me down again i Have more important tHings on my mind. my place is witH tim and i feel tHis very strongly in my Heart and if my marraige suffers tHen tHere wasnt mucH of a marriage tHere in tHe first place. i tHink He was playing Hero wHen He said i could go Help tim but tHen He wanted circumstances to go witH it. i just want to say tHank you again for tHe support and if anyone else feels like writing please do.
kim
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Old 04-09-2005, 12:37 PM #8 (permalink)
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hi i type using cordless track ball and onscreen keyboard. trackball from als society. regina must have als fund raiser. call them, they can get you over many hurdles plus assist with equipment as that is what fund raisers are for. ther are provincial aids to daily living which you homecare coordinator should coordinate. mabe ask husband to get involved as you know it can be very rewarding.
it took me almost an hour to write this but it can be done

here is a copy of my diet

http://www.myfilestash.com/userfiles...anada/diet.jpg
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