Looking for 2+yr severe case inspiration
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July 21, 2006 at 9:17 am
My mother (Dx Oct 2004) is starved for encouragement and good news from people who are surviving severe cases. She’s come so far, but is still far from anything close to her former ability. Still on vent at night. Still has Foley catheter. Can’t roll over or transfer or sit up on her own. Has very weak grip in right hand, less in left side. Can partially feed herself. She asked me to ask you all for examples from people who saw significant improvement after 2 years. She’s afraid she’ll never get off the vent, afraid she’ll never walk, afraid of all those things all GBSers fear. But it’s so seldom that we hear of people who see big changes this far along. Anybody out there who can tell her they couldn’t walk for 2 years, but then could? Anybody who has been vented this long? Anybody who can offer some encouragement to her? Thank you!
Katy -
July 21, 2006 at 12:17 pm
Hi Katy,
She’s come farther then anyone knows really, everyone just doesn’t recognize it yet. Including her. I came from a lot farther back then she is now, but I had to start the recovery process too during this time. Methods and approach need to be looked at, as well as the emotional side. However, if the methods, ie. the phisical part doesn’t start coming around, emotions won’t follow or really matter. She needs actions, and some actions can change emotions in a hurry, and stick better, for the better. Which is what she needs. Explain the vent further, and what she’s doing in PT/OT if you will. Here’s what’s tipping me off. In these posts, you state she was off it for 36 hours, I believe? Then, she uses it at night only. Do you mean vent, or oxygen? Tubes in nose, or pipe on throat? You also mentioned her diaphram gets fatigued, as the reason for this. Where is the diaphram located? Now, have PT do sit ups in bed more then she’s doing now. Excersice legs and stuff, which involve this muscle group and so on, and I bet they can keep her on air for the whole time, instead of part time. Do you see what I’m getting at? I speak for GBS only, and no other ailments or issues going on at the same time throughout my ordeal. I’ll take this statement to the grave with me. GBS gives it to you all up front. Once you regain use of anything, small or big amount, it does not go away. Might change in feel or something of that nature, but if she did it once, like breathing, then she can indeed breath on her own. Something else is stopping her. Emotional trust in her mind that her body will go on it’s own, or therapy is wearing out the phisical system, and too much at once is being done, putting up the roadblocks, are the first two I looked at. Methods an approaches. This is critical time in the process, and what I do know forsure is, nobody will ‘see’ things happen. Things have to be made to happen. I made things happen during this time, and I saw the results 3 years later, and continueing onto 7 years now. She can kinda feed herself, which is a great sign right there. I couldn’t lift the foam larger handle, let alone a spoon put in it, at this time frame she is in. Fear has to take a back seat, and she has to be the tip of the spear on her recovery. Trust her body will come around, take one major thing at a time, and start the working process, without expectations. Those will catch-up later. The healthcare system did more damage to me then GBS did, in funcuntional ways that are costing me today, and I do not want to see that happen to anyone if I can help it. Due to stay the coarse and do what we want, not what you need. Fill us in on some details, and maybe some tips can change things, and maybe not. I’ve been where she is, but she hasn’t been where I’m at yet, and if I can do it, everyone can, or has it in them, to do it.
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July 21, 2006 at 3:04 pm
HI
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July 22, 2006 at 8:59 pm
It was so nice to see your name on the site again.. I usually pop in a few times a week when I need some encouragement.
It sounds like you are looking for some as well.. UGGGh Its so long isn’t it.
I took Mom to a craft fair today and she was so HAPPY!! I was able to push her around and she held onto the packages in her lap..Like old times… This was huge.. So were the packages..
She has been experiencing terrible pain her in upper left leg that is usually relieved by lying down.. Her spirits are up and down.. More up then down lately becasue she is able to go out and about so much more now.. Dad does a beautiful car transfer with a pivot board and off they go.. Mom now uses a commode and just recently they got there shower chair.. Her therapy is only 2 days a week.. little eerie about this and I am annoyed when people say that if they thought she needed more they would advise it.. BS is what i say.
She gets 1 hr of OT and 1 hr of PT on both days. She has done the Treadmill that simulates walking by strapping her to the machineand they are very pleased with her progress. Her balance is not great but she does stand everyday. My father is so good at moving her. God bless him:)
Its sounds like your mom is moving along. I feel so badly that the vent is still a part of her life.. Good news that she is starting to feed. We have the same device at home as well. Gives then some independence..
Her 3 days of therapy sounds great.. How is her ulcer healing?
Please give my best to your mom. I am thinking of you and your family.
Amy Maki
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