Pattys00
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October 31, 2014 at 10:20 pm
My husband is on the other side of CIDP. He is older (59 now) but an active guy. Skiing every weekend, paddling during the summer. He was in a rehab facility for 4 months.
The key for him was getting to a neurologist who know what to do. He received high dose IVIG. Started every week, then as he got better, every other week, then every three weeks. He has now been off IVIG for 9 months after receiving it for 3 years. Small price to pay for being able to walk. He is back skiing and doing great. He even walked a half marathon.
We have talked with many people who have recovered from this and you cannot tell they ever had it. Marshall still has some foot issues, but nothing that stops him from doing anything except maybe running.
If you want to talk with him, please reply and we will figure out hot to get in touch. But, #1 thing to do, find a neurologist who knows GBS and CIDP. We had to travel to Seattle to get to someone who know what to do.
Take care.
Patty
September 1, 2014 at 1:16 amMy hubby has CIDP. He was released from rehab August 2011 on crutches. I work full time and was driving him it ivig and PT appointments. In October 2011 we made the decision to get hand controls. His arms had recovered quite well, but the legs were way too weak to respond quickly to braking.
Best decision we made. Worth every penny. When I drove his car home with the controls he was out in the driveway like a 16 year old who had just gotten his license.
We did have a trainer come to our house to give him some lessons. Hand controls made me feel more comfortable about his driving.
Hope this helps.
February 22, 2014 at 6:37 amMy hubby came down with CIDP 3 years ago. 8 months of going down hill. Paralyzed in a nursing home for 4 1/2 months. He was 56 and about as active as possible.
He has walked his first half marathon, skis every sunday and kayaks 2-3 times per week when the weather permits. Actually was able to run a bit last week. Recovery is still happening. Not as fast as we would like, but still happening.
I made him take tons of supplements. I figured if there is any chance it helps, go for it.
Fish oil (Barleans), Vitamin B12, Lions Mane, Vitamin D (we live in Washington state). His neurologist has been amazed at his recovery. Still not 100%, but pretty darn good. We changed to organic whenever possible to take any stress off the body. We eat a very healthy diet, but enjoy our vices a bit also.
Remember, many of the situations discussed here may not be a true overview of how people recovery. Many people will go away after they recover. Move on and live their lives.
February 22, 2014 at 6:25 amMy husband was in a snf for about 4 1/2 months. Luckily there was never any talk about sending him home before it was safe for him to come home. That required him to be able to safely transfer from the wheelchair. He still needed a hospital bed and was far from being able to stand. But, with IVIG we were seeing slow progress.
It was all based on safety. If you do not feel it would be safe for him, fight. Fight like mad and get the social worker involved. They had to do a home visit before they would approve it.
He first started going down hill January 2011. First walked in July 2011, walked a half marathon Dec 2012. Keep hope up!
August 17, 2013 at 7:21 pmSorry I have not responded sooner. Not on the site much.
Dr. Michael Weiss at UW medical center is amazing!
January 28, 2013 at 6:27 amYour onset sounds very similar to my husband. He went downhill for about 6 months. At that point in time, he started getting better. It has now been 2 years since the onset. He just walked a half marathon in December. He did wear his midweight AFO’s. But, he walked a total of about 16 miles that evening.
He is skiing every weekend. Not as good as he did before, but he came home tonight and said, “I skiied great today”
Have faith the other side will come! Feel free to email me if you want to talk with him. patty(remove this portion)@nsnw(and this portion).us
January 28, 2013 at 6:16 amDid she have any reflexes when the doctor checked her. My husband came down with gbs after the flu. But, it was about 20 days after. Which was what many articles mentioned.
December 31, 2012 at 6:05 amWorking on it every day. I am lucky in that I started running about 3 years ago. Before Marshall got sick I had run a couple half marathons. I am trying to keep it up. Signed up for another one in May next year.
But, I don’t feel like I am the same happy person I was before. I really feel this has changed me a lot. I wonder if other care givers feel that way. He is working a couple hours here and there, but he is on disability. So, now I have the burden of feeling like it is all on me. If something happens to me, what will happen. He is doing absolutely wonderful. But since he was an electrician, he really cannot go back to that work. Having numb fingers isn’t really good when you work with electricity.
So, I guess I feel a lot of weight. I think you pegged it when you said it is a struggle, every day.
December 31, 2012 at 5:53 amHe did weekly from April 2011 until October 2011, then he was changed to every other week for another 6 months. Then every three weeks. Then every 4 weeks. Now at the first of the year we are going to every 5 weeks.
I think it is actually 1gm per kg. The first 5 ivig treatments were a much lower dose, a really small bottle. Not it takes about 4 hours and is quite large.
He has a pure motor version of CIDP and his neurologist has kept him away from steroids. He is doing great. Still some foot drop, but really doing good. I just still hold my breath everytime he has a headache or is really tired.
When we first started this journey, I needed to see success stories. So, I want to keep posting so others who are just starting can see there is life on the other side.
He came home today from the mountain just beaming. Evidently it was sunny up there and just an amazing beautiful day. Living in Washington, we need that. But, he said his skiing was actually pretty good today. This was his 4th or 5th time out this year. He is on ski patrol, so he lives and breathes skiing.
When we were leaving UW medical, he told his rehab doc that he was going to ski last year. She was mortified. But, what she didn’t realize is that sking to Marshall is like walking to most of us. So, when he got sick, all I wanted was for him to be able to ski again. 1 month before he got sick, we skied together for the first time in 10 years. I has a 70 mph rollover accident and had a long recovery. So, we had been through a long recovery and when we were told his would be a long recovery, we both looked at each other and said, been there, done that. We knew we could do it.
We are actually only 1 1/2 years into his recovery, so we have quite a bit of time for more improvement.
I hope you to will be able to get back on the boards again.
May 28, 2012 at 11:00 pmMy husband get 1gms/km (I think). Started out every week. Dropped to every other, then every three weeks. Now down to once per month. He is always pretreated to help prevent any reaction.
He is doing fantastic! It has been about 14 months since he started on the high dosage which was prescribed by a neurologist at University of Washington medical.
December 6, 2011 at 1:26 amI live right by the border and have lots of canadian friends. I am going to enjoy forwarding it on to them, eh!
December 6, 2011 at 1:22 amIt is so nice to see good news here. You have me smiling! Try and relax and trust that everything will be ok!
December 6, 2011 at 1:19 amHe only started responding when they went to weekly high dose IVIG treatments.
October 27, 2011 at 1:07 pmI hope people realize what their posts do for people like me just starting down this road. I don’t know what I would have done without this forum!
October 27, 2011 at 11:18 amThat is why i haven’t had my husband reading posts. I hope to still be updating on his condition and at least post an exit post at some point in time.
Yesterday i was in tears driving to work. He was able to move his foot/ankle just a bit. That is the first movement in the foot in 6 or 7 months. He is an avid skiier, no actually he lives to ski, so i am so hopeful he will recover enough to ski.
I would love to see posts from folks who mostly recovered. Hope is hard to keep in ones heart when recovery goes from days to weeks to months to years.
