Chances of standing/walking again?

I cannot believe the insurance company has done this to her! It is widely different for everyone here. Some never completely lose their ability to take a few steps while others I have heard of have been a year! This is the responsibility of her Dr. to decide if she has “plateaued” in her recovery or not!
My Dr actually had a showdown with my ins. over this sort of issue. Keep believing in her! My family continued doing my pt with me long after I was released from professional care & THEY were the large contributer in my recovery (also – the fact that my hubby is lousy at housework & cooking gave me added incenative to get stronger). I did not make a full recovery – I would rate it 85 percent but I can do darn near anything I want to and there is a good chance your Mom will too. It takes time – lots of time – give her time. Good luck to you.

your mom is in my prayers. Where do you live? How old is your mom? Is she on medicaid? does she have supplemental insurance?
I am not trying to be nosey but those are all factors in comming up with an answer to your question about the insurance co.
My sister has been in the Hospital and rehab centers since March 10th 2010. From what I understand every case is different. My sister had a set back about two weeks ago but she did pull through just fine.
She has more movement in her left arm than her right side (she is right handed)
She is talking but it is hard to understand her because she cannot control her tongue or mouth. She has made tremendous progress since this started. But like everyone on this forum has stated and I cannot emphasize it enough every one is different. It can be very frustrating for my sister, they put her on an anti depressant and it seems to really help with her mood she is very up beat, which is where we come in, we keep her up and tell her what great progress she is making.
My sister’s insurance ran out 2 weeks ago, I think she reached the limit that her insurance will pay. She is going to a rehab center which she has to pay for, she cannot go home she lives too far from her family and her husband has no one to help with her care and the hospital said it was not a good idea. So he is paying for 1 month out of pocket for the rehab center $6,000. And we are praying that she progresses enough to be able to go home. She lives 3 hours from her family. But i told her husband when she does go home I will see how much time I can take off work to be able to help.
I understand where you are coming from, you want answers and you want them now and I sympathize with you because that is what I want too. But I hope support will help I know it has for me.
Take care and i will keep your mom in my prayers, they really work.

Leilana and Dianes sister, keep up the faith, and for gosh sakes don’t give up. Call the state office of the insurance commissioners office and let him know what’s going on. He is in total control of the insurance in your state. Also email the foundation and let them know your plight. There are lots of resourses that could help you. As a lot of us know, walking is not at all out of the question. We have all had to take baby steps to get there. God Bless and we’ll keep you in our prayers.

[QUOTE]July, she had extensive PT/OT and has since been able to wiggle her toes more consistently, move her feet, bend her knees, and move her thighs, but not enough strength/control to move completely.[/QUOTE]

That is good news! ANY improvement has to be celebrated, with fireworks if possible. Strength and control will come.

[QUOTE]We just found out last week from the insurance company that since she still cannot stand after 6 weeks of extensive PT/OT, she has “plateaued” in their eyes, and they are refusing to extend her stay at the hospital. So with a heavy heart, we are taking her back home next Friday.[/QUOTE]

Shame on those Nazi politicians who want to bring proper healthcare to all Americans. :p Though Canadian healthcare has its problems, at least in Canada patients stay in the hospital until they are out of medical danger.

Anyway, think of this as a HUGE positive. Hospitals SUCK and are a mental drain on the patients that have to endure their ‘care’. She is much better at home. Love and distractions using small comforts have been a big part of my recovery. A lot can be done with theraband, leg weights, light dumbells, and more at home. If you were present at her physio sessions, just carefully do some of those excercises at home. Local physio sessions could also be arranged, sometimes in your own home. Check all of her health coverage options. The SWIMMING POOL has been great for me, you could work with your Mom at a local pool when she is ready to get into one.

Look on craigslist if you are near a city and there are great deals. People are always seling off stationary bikes and other equipment (cheap) that she could use when she is more able. A home gym or a healthclub is a great option.

[QUOTE]I would like to gauge the chances of my mom being able to stand/walk again. I want to believe that since she can move her legs, she will stand/walk again one day, even if it will take a long time, I’d like to believe it. But I want to hear from you if that belief is true or not. I’d like to know. ~_~ [/QUOTE]

I haven’t met your Mom and can give no medical prognosis. But I believe SHE WILL. Your Mom and all of those close to her must first believe this, even blindly. Celebrate every achievement.

[QUOTE]I know everyone is different, but I’d like to know so I can be realistic. I will work her out everyday to the best of my ability (and energy). My mom is very depressed that she is burdening the family, but I keep telling her she’s getting stronger and doing more, and that makes it easier for me.[/QUOTE]

Be realistic (most people-70%!-are reported to [B][U]fully [/U][/B]recover, they probably spend little to no time on this forum) or unrealistic (belief is powerful, even when it is not apparent). And by the way, you’re a great kid and your mother should be proud.

Hi Leilana………….I know that it must seem a daunting task trying to help your mother recover from GBS. It is unfortunate that an affordable re-hab facility is not a viable option b/c of the financial burden that it presents to the insurance companies. I credit much of my recovery (which is about 95%), to the physical therapists I had over an 11 week period after I left the hospital. If you can work with your mom, that would be of immense benefit. Just know that it will require extreme patience and lots of love and tears as recovery takes time.

Today I met a women who contacted GBS at age 78…..she is now 85….recovered to walk again…….I was 58 when I was stricken (paralyzed from neck down, no vent), and 5 months later I was walking albeit unsteady.

Your mom needs to know that she is not being a burden…..that she has loved ones who want to do their best to make her better. My 20 year old daughter stepped up to the plate last year to help me in some of my hardest times…..I am so thankful for her help. Family can make such a big difference in speed of recovery especially during the difficult times.

Something that I haven’t shared in the forums was the one day I just quit! I had had a rough night in the hospital….very sick, not having hit the bottom yet, discouraged……the next day I refused therapy…..didn’t want to see anyone…..I quit for a day..tuned everyone out….but the important thing you need to know is that this only happened once…….and more importantly, I didn’t give up. I clung to the idea that I would get better. I didn’t know when or how exactly, but I never gave up hope that I could improve after that bad day.

Recovery won’t be easy…..it will take more work than you can imagine…I am reminded of the children’s story “The Little Engine That Could”…against very difficult odds, SHE overcame adversity…use the positive elements of your life…..family, faith, friends, and health professionals as vechicles to getting better. Both you and your mom are more powerful than you think. Rejoice in the smallest of rewards. It is my wish that over time SHE will be able to say…”I thought I could”, when she takes her first steps to walking again. May good things happen in both your lives………

Leiana,
I have positive thoughts and many prayers for your Mother. Who knows what little miracles are in store along the way.

She sure can be able to walk again!

I was totally paralyzed in Oct 2007 and could not stand until 5 months later, and that was holding onto a walker! I took my first baby steps without a walker or crutches 2 months after that. And then it took months more to build up muscles to walk normally. The process is slow so don’t give up hope!

Your love, devotion and belief will get her there. Looks like she has that all through you!

This message is for your Mom:

You are no burden and your kid loves you. please let her and your family/friends help and just work on getting better (and know that you will:) )

Best

[QUOTE=Leilani]Thank you for all your responses everybody! Thank you thank you for your stories. I’ve done a lot of research for GBS, I understand it’s slow, but as I’m exhausted I start to panic and get anxious. Then it’s hard for me to assure my mom without some specific stories in hand (I’m a horrible liar).

I’m working on trying to get the extension (hoping for the best, expecting the worst), but now I also realize, when mom comes home, it’s time to invite a GBS survivor to give a pep talk to mom. Someone who REALLY knows what she’s going through.

Thanks again everyone, I’ll keep you posted.[/QUOTE]
If I could afford a flight to California I would leave today. I had a ‘liason’ (GBS survivor come visit me with his lovely young family. It was a really potent experience that helped me a lot.

The stats will tell you that our rate of recovery usually peaks within the first 3 years after onset, (though some authorities have extended this time period to 4 years), so she has a lot of time left to rehab her damaged body, and only time will tell how much she is able to recover. And even after the first three to four years, many patients have still noted unexpected improvements years later.
Shame on the insurance companies; this condition takes lots of time to heal, more than 6 weeks, and it can’t be rushed or pre-defined because every patient is different. But it’s wonderful that she has made so many improvements; it’s a good sign, shows that she’s a fighter, and will do her utmost in the battle for recovery.

Before discharge from the hospital, the social worker must come up with a treatment plan for the patient’s care at home which should include follow up by the visiting nurse service or county hospital service. and it is the social worker who is responsible for setting this up and checking with insurance which should pay for this. the visting nurse then will should ask about in home physical therapy which the ins. should pay for, she can set up meals on wheels for her (you only have to be 60) and she can arrange for a social worker to come to the home to help with other issues. Try to research a good physical therapist near her home that you can take her to outside of the home. insurance wont pay for in home and outside so decide which is better for her. if you find a pt you like, as if they work with gbs patients b/c the damage is neurological, not orthodpedic. ask your mom’s primary care dr to write presciptions for physical therapy so the insurance covers the treatment if you go outside. But you neeed to find out first how many sessiions of pt your ins. will pay for. remember this does NOT include what ins paid for as part of the hospital stay.

I forgot to add to the above reply: when interviewing the physical therapist or talking to the visiting nurse do not use the word Plateau when you discuss treatment. That will turn them off right away. Let the pt decide if she has plateaued or not b/c he will have to measure her movements and decide if pt will improve the measurement. it isnt over until its over and dont let them tell you differently.

Leilani,
You have received great advice from a loving, supportive, informative GBS family. So I shall just add, Bah Humbug to the greedy insurance companies…what do you expect from them?! And to think our government allows this to happen when most of the other developed countries surpass us in health care.
When I could not stand for 4-5 months, I would be obsessed with how legs can hold people up. I would watch them on tv and be amazed that legs could do what they do! Kinda like watching flamingoes….how do those legs keep them up??? I am one of the most optomistic people you can imagine….yet my logical brain questioned how legs could hold people’s bodies up and walk!! Your mom might be in that state….just asssure her that it will happen and the brain will tell the body to do that. They are only starting to study how influencial the brain is for recovery..it is even more than we imagine.
Take care of yourself….stress brought on GBS for many people. I took care of my aging mom for 5 years and I also was panicked and anxious because I wanted to do the Right thing for her….I wanted to do MORE than Enough….because of the love we feel for them. On this site, you will get stories for your mom and good information….more than just a few doctors or nurses can provide.

The insurance company is ignorant about the nature of GBS, along with others. It seems the only thing that has plateaued is their brain. Your mother needs professional rehab. Perhaps you can get a Neurologist to get her into rehab. When the insurance money runs out her case will be one for Medicaid. I did not stand for 7 months and it was for a second. I had a year of therapy and went home using a walker. I still use it. Why couldn’t I stand? Because my quad muscles (tops of the thighs) were weak. They had to be built up using a special exercise machine, along with a therapist working the others every day. We are not trained to do this work. Do not let the insurance people dictate. Go to a rehab facility that accepts Medicaid. I paid through the nose from my savings, but then Medicaid assisted under a 6 month program called Chronic Care Nursing Home Assistance. Each state is different, so you will have to find out what is available. The Rehab Nursing Facility has a Medicaid Coordinator and you should talk with them. No matter how loving a family is, they cannot provide professional rehab. If you cannot do any of the above, you will have to be trained by a pro to provide the exercises needed to get her to stand. By the way, we are all different in healing. I cannot wiggle my toes after 19 months. But then again, I never did much wiggling when I was healthy! Remember to tell these insurance idiots that healing from GBS takes 6 months to two years OR MORE. If necessary, you can get a letter from a Neurologist or give them the excerpt from the GBS Handbook. If you choose to fight the insurance people, you will need this support. Meanwhile, take one day at a time. Care for yourself as well.

I was very independant before being diagnosed and felt like I was a huge burden and would push myself to hard and go backwards. I moved in with my parents (not to mention my 4 kids) and since then have been improving. If someone had told me 5 months ago before giving birth that I would get back to 80 % old me I would have laughed my a** off.

I think she will walk again a walker is what I use when Im really tired, I also bought a wedge which helps and a bed rail. Rubber bands for exercice can help as well and are less dangerous if dropped.

Time, patience, perseverance and lots of love:)

Hedley’s right when I was discharged from the hospital I went to a nursing h.
ome for rehab, while this lady in my county who got it around the same time I did is still using a walker.
I resisted alittle going to the nursing home but with the wonderful support of my wife an friends today not only can I walk but I can run
Time is everything make sure your mom works hard but Never over due it
Lots of rest.
Keep us posted

1. nice name, thats my daughters name. Hawaiin? Filipina?
2. How dare they! Nothing about this disease follows a set patern for everyone. 8 mos for me. Make sure she dooes her PT, most important.

Dont worry to much, if I’m walking (I am), think she will!