AnonymousMarch 4, 2007 at 4:15 pm
I have been doing weekley up dates of my progress or set backs. I think since we all are family it would help us to post a weekley up date of our progress for the week. Say do it on Sunday morning. I feel this will give others a chance to see how we are doing and to give advice and encourgment. I have done two on my 1st post.. any suggestions:) 🙂 🙂
AnonymousMarch 11, 2007 at 5:00 pm
WOW what a week. My therpist has me doing things he said people don’t do till around the 6th month. I noticed slow changes during last week in my feet. Wed when I went to therpy I felt I could walk without my cane so tried it. It blew my mind I discovered that some of the numbness in my feet had gone and I had feeling coming back. Sat I was walking around the house most of the day with out the use of my cane. I give thanks to God every day so many times. I have turned myself over to him and feel calminess–peace–and above all patience. My rash is gone but still have several places that itch.
I have read so may times of people that have over done the rehab. My therpist keeps saying less is best. I listen as this has reshaped my life in so many ways. I will help anyone I can and will give support when it is asked for. My belief are spirtual and I follow the spirtual belives of the native americans. So many have given me so much from the form and my prayers are for everyone to heal and get back to normal. My prayers and blessings go out to everyone May Gods healing powers touch all.Steve North Fla
AnonymousMarch 12, 2007 at 6:17 pm
Thank you Pam for your reply. Well today I was re evulated for medicare. WOW. My therpist had me do things that he said people with 6 months of therpy do not do. I was on my feet without a cane for over an hour. walking and then looking up and then down. then I had to walk and look left then right and turn and do it all over again. I had to get up without useing my hands or any support. I had to walk and obsticle course and then step over 2 pillows. another thing I had to do was stand for 2 mins with no support and then close my eyes and do it.
I thought we had finished then he said you have to do the stairs (13)steps. I have done these over the past 3 weeks with my cane but he said today no cane but could hold the rail. that would be minus 1 point–I could go up one step at a time –2 points orrrrrrrrrr walk up them like anyone would. I was sitting and resting so meditated and asked God could I do it. I was taking deep breaths and on the 6th breath a soft voice said are you ready I said yes and on my 7th deep breath I stood up and walked up those steps and only touched the rail once when I got to the top my legs were weak. I rested a min then said lets go and I walked down and he had to move faster and this was done without a cane or touching the rail.I rested a few mins then he said lets walk. I thought we were going back inside –we did after I walked around the bldg. All this was done with no cane. Then he let me lay down for and ice treatment for my back. he and his his helper both were very happy with me and I was also. Next week I go 2 times a week and for only 30 mins. I had been going 3 times a week for an hour.
I do have to say I am tired (lol) I will say again do as you are told. no more. and those blessed with therpy are so lucky. Every one needs therpy. This was my day. This Wed we are going camping for 5 days and I am READY. May Gods blessings be with you’ll and my prayers are with you every day–Steve
AnonymousMarch 18, 2007 at 5:41 pm
I wish more would add their updates here as I feel it will help others to keep the faith and cont to fight,
My past week was very intresting. The numbness in my feet cont to become less and less and now can walk without my cane at home. If my back was not hurting I would not need my cane.
Wed we left to go camping in our Motor Home. I hadn’t driven it for over 2 months. I did good and spent my time visiting with friends and resting. Every day I am feeling less and less numbness and I give my recovery to God and my therpist and my Neroligist. I have learned that we all have improvement every day. all we have to do is look for them. I thank everyone for your support and I will be here for you always. Remember have faith and let it go and let God. Steve
AnonymousMarch 19, 2007 at 3:30 pm
I think this is a great idea of weekly postings. Unfortunately for me, it has been 10 years so this really doesn’t apply to me or others like me. But there are plenty of you all under a year and I think that is who this should apply to. I did see some improvements from years 3 to 5, and am now dealing with little ups and downs (although they don’t seem so little when they hit).
I enjoy reading about your progress, patience and faith!
AnonymousMarch 20, 2007 at 9:39 am
I pray things are going better for you. You were the 1st one to reply to my 1st post. I am slowley getting better each day and it is God and all of you with your support and prayers. Someone asked me when we are well how long will it be before we forget who healed us. ???? My reply was NEVER. I will give and help anyone that asks for it. Monday I met another man just starting therpy and gave support to him. Thank you my friend Chrissy, You are one of the angels that give and give—Your Friend Steve
AnonymousMarch 24, 2007 at 11:56 am
Well here it is another week. I cont to improve and now walking almost constanley without my cane. I have come down with a head cold and called my nuroligist and she said not to worry just get rid of it. This is the 1st cold I have had in years.
Mentally I am feeling down some today but this is life. It will get better. I cont to turn myself over to God and let him not me control my life. I pray for everyone and that they healing will cont and they will improve. May Gods blessings be with you. (my beliefs are spirtual)PS- my back is getting better.
AnonymousMarch 27, 2007 at 11:28 am
Good morning all.
I just saw my Neuroligist and she was excited to see me walking without any support. My strength has returned in my legs and feet and the numbness is slowley going away. I have been blessed in so many ways and thank all of you for your support. I do not see her again for 3 months. I will always be here to give support to anyone. I told my Dr if she had someone with GBS that was down I would be more than happy to talk to them. I still have healing to go and will cont to let it go and let God. I will always give support to anyone that needs encourgement. If anyone needs a good Neuroligist in North Fla let me know. May Gods blessing be with all of us.
AnonymousApril 1, 2007 at 7:01 pm
WOW another week. My cold is better and walking is better and back pain is better (thank you God) I have about 3 more weeks of therpy then will be on my own. Finally walked without taking my cane, Went out to dinner and then went to the grocery store and shopped for meat. The feeling is still coming back in my right foot and will say have about 10% more feeling over last week. My therpist has me walking up 4 flights of stair with no rest.He said tomorrow will have to do it twice/// ?????I will try. My prayers and blessing go out to everyone and never give up fight fight. and have faith. above all do not give up. My prayers for everyone Steve (mochacat) the name comes from one of my show cats
AnonymousApril 7, 2007 at 8:07 am
Another week and things are slowling down some but still improveing. My walking is good and have hardley used my cane, the main problem is my back and my therpist said he will start working on it. Again I have been blessed and will pass this on to anyone. I turned myself over and let it go and let Gods will be done. May his blessing be with each and everyone of us and remember to think postive. and always know you will get better
April 9, 2007 at 2:22 pm
Steve you are amazing and you are doing so good. for me it is inspired to read your update, my self is in the 5 month and starting to use my feet alittle. Im at rehab center 5 days in very heavy program, but I did stay home over the easter and I found out I can move my toes on the right foot. That put smile on my face 🙂
greetings from Iceland,
AnonymousApril 12, 2007 at 8:49 am
Well I was going camping yesterday but my Motor Home had other ideas. It stopped in front of the house, What a blessing that it didn’t happen on the road.
My therpist told me Monday I was finished with my therpy for GBS and now have a month of therpy to get my back pain in order. We started this on Tue and feel it will get better as it has already gone from pain to sore.
The numbness in my feet is stiil improveing each day. Now I have about 30 mins of exersise I have to do every day.
I read what others post and my heart goes out to them. I pray for all of us every day and the only way I can do it is to turn myself over to God and say I am yours use me as you wish. I have been calm and patience since I left the hospital.
I found out getting down and angery doesn’t help. I accepted I had GBS and then said I was going to walk again and I did in less than 3 months. My therpist would have me doing something and I did one wrong. He would say rest I said NO and did it again till I got it. I would be told to do 10 mins on the tredmill and would do 12.
Yes I still get frustrated at times but realize it will not help so why waste energy. my feelings are that giveing it to God and then doing what he guides me too is the best way and only way. I want you to know I am not a religous fantic.My beliefs are spirtual of the native american.
I will always be here to help and encourage anyone I can. Yes I have been blessed but I still feel the pain of others fighting a longer road to healing–Steve
AnonymousApril 22, 2007 at 4:59 pm
Well here it is another week.
The past week was nice. Got back from camping on Monday and had to cancel my therpy for tue as had to go to a friends funeral.My week has been some up and downs and pain with my back. I am still walking alot without my cane and my therpist is saying the pain will go so I am seeing him 2 times a week for a month.
At times I find my exersise is painful but I know I need it to get better. I still take pain meds each morning and they remove about 80% of my pain. I will allways know I am blessed and keep everyone in my prayers. I will give back what has been give to me till the end.Thank you to everyone for your words of encourgement and prayers. Steve
AnonymousApril 25, 2007 at 7:47 pm
It’s been 14 months for me now, I’ve finally started walking into the rec center & other public places without a cane or walker. I still need to build more strength, but I’ve seen significant progress the last month or so – I’m walking up to a mile twice a week now, my work-outs (weights, cardio-bike, swimming) have really begun to increase in intensity…all the work I’ve put into rehabbing my body is begining to pay off. 🙂
AnonymousApril 28, 2007 at 12:49 pm
Here it is the 28th of April. I have for the most part don’t use my cane. My back is hurting less and the numbness in my right foot has become less again. My left foot is feeling almost normal. My therpy stops in 2 more weeks. Thank you God and everyone that is praying for me and all of us. Yes I have been blessed but it doesn’t mean I do not need any of you anymore. I will always need you and will be here every day. So many forget after they get better but I will never forget. I pray for all of us every day and this will cont till my time ends. I have made some beautiful friends here and will do and help every day in any way I can.
May Gods blessings be with each and every one and this is the way I have delt with GBS and thanks to everyone for your support
Your friend forever Steve
AnonymousMay 4, 2007 at 9:40 am
Another week is passing. It has been so dry in Fla and they said on the news we now have 97 wild fires in the state. It is so dry and hot. This week is my last for therpy. I am trying to get massage therpy for my back as it is improveing and this morning my pain was almost gone when I got up.
I have had some up and downs with depression this week. I feel alot of it is from what has happen in my life over the past 4 months. I still get up and give myself to God and this carrys me through the day. Next week will be going camping for 4 days and maybe this will pep me up.
I know that all of my friends here have helped me to keep going forward. I pray for all of us day and evening. never never give up. there is light at the end of the tunnel. above all when you are better don’t forget the love you received here and give back to others what was given to you. as I have said I will never forget what happen to me and will be here to help anyone any one any way I can. The numbness in my right foot is still going down and now walking constanley without my cane. Remember have faith and think postive and let us know how you are doing. this just may be what someone needs to hear Have a wonderful weekend (Steve)
AnonymousMay 13, 2007 at 9:39 am
Well here it is May. My therpy was finished last Monday. My back is still my main problrem. I am walking without my cane alot now. I have had fits of depression over the past week and feel some of the meds I am are conflicting with others. Tue I have an appointment with my Dr to cut out as much as we can.Deep down I feel there is more going on with my back pain than I know. Yes I am blessed and Gods healing powers are working but as others I do get down and crying the poor me.
As you know we have a big fire out of control for the Ga fire. We went camping just 50 miles from home. We had smoke Wed but the fire was over 60 miles north and east of us. Thur at 2 PM it was like it was midninght outside. About 11 pm Thur night the owners came around and said we all had to leave. The fire was now only 10 miles north of us coming fast. In less than an hour over 60 RVs were unhooked and gone. When we pulled out of the park about midnight all we saw was fire fighting equippment. what a reality check.The drive down I-75 was very peaceful with light traffic. Now I-75 from I-10 to the Ga state line is closed both ways over 60 miles. this has been closed for over 18 hrs so far and I-10 is closed for 40 miles.I amazed myself how well I woke up and walked. lol. May all of the mothers have a wonderful MOTHER DAY. and may Gods blessing be with everyone. and have faith it does get better Your friend Steve
AnonymousMay 21, 2007 at 2:06 pm
Well here it is another week and my walking is doing good. I do get tired easy and my right leg feels stiff after I walk too much. I am still fighting depression on and off and my Dr has changed my med. I am going to get on the tred mill and do what I can each day and hopefully this will ease the stiffness. My pain med doesn’t seem to be working but I am only taking 1 a day. The pain in my back comes and goes. I have what my dr calls anxiety attacks. with a pain in my chest. they stop within mins if I stop and rest for a few mins.
My recovery is still going on and give thanks every day for the blessings. Today I got out and mowed the yard (rider mower) and then did some maintance on the mower. From reading what you,ll keep saying (a little each day) I am doing this. I thank everyone for their love and concern and advice and I have had a few write me and I give back to them the hope and strength you have given to me. May Gods blessings be with everyone and I will give to anyone that is walking the path we all are walking.
AnonymousMay 25, 2007 at 4:08 pm
Hi mochacat; I agree that weekly updates would be very helpful and keep us from freaking out that we may have some other weird syndrome other than these frustrating residuals of GBS. I was first diagnosed in 2000. I have really been overdoing it lately and the stress of life is killing me. I stress over things normal people don’t. My ankles and my thumbs are killing me and the fact that I can rarely do anything without pure long chronic, chronic, fatigue is bumming me out. I take about 10 mg valium when needed and it helps me to relax and actually the aching in my hands and feet subsides for a short while. I’m grateful for what I can do, but it is really hard for me to relax and let go. Trying to shop – forget it. I am 60 now and not to brag on myself, but others think, I look really good and no one would expect how really tired and achy I really am so that adds additional pressure to just say “no”. You guys are a great support group and I find great solace here. I wish you all the best.
AnonymousJune 3, 2007 at 10:00 am
Here it is June already. We just had our 1st really good rain as haven’t had any rain to talk about for over 2 months. I am coming into the 5th month of GBS recovery. In the past week I have done ok. Had problems with my diabetic meds and had to change them. My right foot is holding at only 1/4 numb and my left is almost normal.I do my exersise’s every other day and my back has improved alot with less pain. All in all I have so much to be thankful for and keep all of you in my prayers and thoughts (Steve)
AnonymousJune 21, 2007 at 10:02 am
Good morning all. I am still improveing each day. I haven’t used my cane for over a month. My back still is hurting and saw my Neuroligist on Tue and she said I have nerves that are being squeezed and that she may give me a cortizone shot if it doesn’t improve.She is very happy with my recovery and said I am 99% recovered. I told her about our form and asked her to come to it. also told her over 60% of the doctors do not know how to diagnose GBS. She didn’t say no to my statement. I asked her if I may use her name for people in Florida looking for a Newroligist and she say definatley. Her name is Dr Ann Rottman in Gainesville. She is a no nonsence Doctor and very well versed in GBS. I told her we needed doctors on our form as many will learn more from us than they know.Has anyone had a cortizone shot.
My Dr had me on a med for stress and I came down with acid reflex. I read about the side effects and this is one of the side effects, also it is not for diabetics. and it will raise blood pressure so I am slowley coming off of it. I wonder sometimes if doctors really read what side effects are with the meds they give us. what is funny is when you get a new med there are pages saying how it will kill you and a paragraph saying how good it is. What has happen to the old fashon meds. I pray for all of us and that Gods blessing and healing prayers will cont to flow in us Remeber ONE DAY AT A TIME
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