Hope for survivors

[BenHale]

My name is Ben Hale. I am currently working for an innovative woman who is developing an international program with a Teaching Hospital of Tianjin, China. For over two years Ruth Lycke has taken American stroke survivors to China for rehabilitation.

 

Ruth suffered a brain-stem bleed and stroke in 2001. For 2 years Ruth went through various treatments and rehabilitation and she was told by her American doctors to learn to live with what she had recovered. Ruth was faced with spending the rest of her life in her bed or bathroom or in between. (Her husband says he always knew where she was.)

 

Ruth was not satisfied with her limited recovery, so in 2004, with the help of a Chinese exchange student Ruth went to China to receive treatment. She says that she is now 99% recovered and she currently spends up to 8 months of the year taking other stroke survivors to the hospital in Tianjin, China. These stays last 3 months and she has now taken over 60 patients, all of which have had significant improvements. Not bad for a young lady who was told by doctors that she should be happy to just be alive and she would never have a normal life again.

 

Ruth tells her story on 2 websites http://www.chinaconnection.cc and http://www.strokesurvivors.net/pages/12/index.htm and in her book "Out of the Darkness and into the Light". Twice she has been on a talk show with WHO radio in her home state of Iowa. Podcasts of the radio shows are available at http://www.mickelson.libsyn.com/index.php?post_id=215828 or at http://www.mickelson.libsyn.com/index.php?post_id=138825. On the Podcast of the May 17, 2007 show, Mickelson interviews Ruth and three of the other people that she has taken to China. Two were stroke survivors and the third had brain injuries from a water-skiing accident.

 

We are trying to get the word out to as many stroke survivors as possible that they do not need to be satisfied with what American doctors tell them and that there are other options out there for them. If you are interested in learning more about his program please feel free to pm me. (personal email information deleted by Donna - MBM)

 

Hope this can help (feel free to search "ruth lycke" on this board too for other success stories)

[fking]

Ben,

 

This all sounds interesting when you sit here with paralysis not knowing how much more you will recover nor how long it will take. I didn't click on any of the sites you listed as yet but I will.

 

The first thing comes to my mind is money for getting from the US or any point or country to China. Then staying for 3 months. Exchange students or those cases plus pass port provisions now in effect would probably make traveling to China from many points not that accessible for stroke treatments in my opinion.

 

Perhaps after reading the sited you have listed, my views may change. Thanks for the info, I'm sure many members will read the sites you noted for more understanding and judgements for their cases.

[srademacher]

Thanks for the info. Ben. I did read through some of the information on the websites, and it almost sounds too good to be true.

 

I do know, however, that when my husband had acupuncture - almost 2 years post-stroke, he did show significant signs of improvement in his speech, balance, and cognitive functions. He received the treatments locally from an acupuncturist. I'm not sure we could afford spending $20,000 plus for a trip to China for that and other herbal treatments.

 

Most stroke survivors end up on disability with a fixed income and probably couldn't afford the cost of the China treatment.

 

 

Sarah

 

[pprovost]

Hi Ben,

Thanks for the link to The China Connection. Interesting resource pages

 

best,

Pat

[BenHale]

I'm happy to see the interest. Passports are possible. Visas are also possible and Ruth has been taking up to ten people per month. The costs, including airfare, housing and treatments (does not include souvenirs or tours) is currently under $25,000. This includes the stroke survivor and a companion who both stay in the same hospital room. Companions may also stay in an adjoining room or a nearby hotel for an additional cost. Some stroke survivors have gone without a companion. Many patients have had family and friends help with the costs and some have even had help from insurance but that it obviously different in every case (we all know how insurance companies can be). Most participants take laptops, many with webcams, as the hospital provides internet connections for the American patients. Many do real-time video to stay in contact with family and friends. As the patients improve, they tend to get out more and one of the current patients has emailed pictures from a museum and various shopping trips. In other words, he's progressed from a patient dependant on others to more independence and some tourist activities. Once again if you have any questions please feel free to respond here or PM me for more details.

 

Hope this helps

[dstraugh]

Ben,

 

Sounds super but cost prohibitive to many. There are many of us living on SSDI benefits which does not come close to covering this type of expenditure. Personally speaking, I cannot see Medicare paying for me to go to China for treatment. Perhaps some day.....

[kanderson]

hi ben and welcome to strokenetwork. i have to agree with the others. sounds very interesting. it seems to me any worth while treatment for stroke survivors are out of our reach due to costs. it seems to me that no one including ins co's care if we recover or not from a stroke, ins co won't cover it after a certain point and the costs are so high for anything it seems since most survivors are unable to work after stroke. a lot of people's savings are eaten up after a stroke, on expenses just to be able to live. thanks for the information though.

[Phyllis4732]

I can't believe our membership isn't aware that we have a member who is currently in China after having cell stem implantation. I'm not sure of the time he has been there but it has been several months + some added. Read about it on the blogs page. It seems that the amount of money spent could be better spent here. We have acupuncture as mentioned and there are doctors here who practice Chinese herb medication. (My niece did not have a stroke but went to one after a friend had gone to him. Many strange things and I'm not sure whether she is sold on his theories still.)

 

Read what is on Strokenet; it's available to all members. Wasn't this article in one of the Stroke magazines as well. I thought many if not all of most of members got these. Why does this sound different to you now?

[mekelly]

I would like to find a therapy that would be helpful in giving my Mother the ability to walk and be more independant, so I was excited when I saw this thread. However, after looking at the websites and doing some research I am less so.

 

Different things seem to work for different people and I do not want to appear overly cynical but I am cautious about any treatment that costs this much and is supposedly located only outside of the United States. A quick internet search does not indicate any objective, randomized studies showing that this type of treatment works. In fact, a 2006 examination of the various acupuncture studies indicates that many of the studies are poorly run and that the reported gains may be the result of a placebo effect.

 

I support any functional gain (placebo or otherwise) and I think that trying massage, a good diet, exercise as tolerated and devoting 90 minutes a day to treatment (all things proposed by Lycke) make sense. I also think that exploring acupuncture or other traditional chinese medicine may make sense for some people. All of these could be done in the US for a lot less money.

 

According to the websites, the trips have been going on for several years. Does anyone actually know anyone who has achieived any functional recovery from this therapy?

[BenHale]

Concerning Ruth's program and results

[tdehaas]

Hi Ben

 

Thx for your interest and sharing. I just looked through both websites you linked and found some interesting info. It’s sounds as though Ruth did experience some miraculous recovery during the past six years. We actually have a couple of other members who have tried extensive Stem Cell and acupuncture therapy not to mention many who have visited an Acupuncturist over the course of their individual rehab.

 

I think others have raised some valid issues with respect to the costs involved in Ruth’s journey; not only for the actual treatment but just the basic costs of living as one’s takes the time to travel those paths. I won’t bring that up as much as I agree. My concern is something different.

 

I had my ischemic stroke in 4/04 and the ER staff including the attending Neuro told my wife to call the family as I might not make it through the night. Well, obviously, I ‘m here to write (type) about it. and that’s using my left sided affected hand to help. The hand the OT said would probably remain a fist during my life. Now I don’t know the percentage of recovery I got back in the last three years, but it’s a bunch and I’m extremely thankful to God, my spouse, my therapists, fellow stroke netters and many other friends and family. I guess it helps that there were plans for me too and good insurance..

 

I went through the standard two weeks acute rehab, One month in-home therapy and three week out-patient treatment. And that’s more than most! I guess my biggest point is that the I believe our bodies including the brain is a pretty resilient piece of equipment and can repair itself amazingly good with time and perseverance. Like most everyone, I want 99-100% recovery and I work at restoring more each day. I bet stem cell and acupuncture treatment would help more if it was affordable and available.

 

Bottom line for me, I am not doubting the effectiveness of acupuncture, I just wish i had a better picture of her starting point prior to the China treatment, then I would feel better about looking into it. I would just like some specific examples sometime. We normally just get vague terms and broad generalizations, i.e. “recovered most” “expected to die “, “minimal movement” “cognitive problems’ Something quantitative or measurable, more credible; Does Ruth have some pre-China treatment video? If so, her website would be greatly improved and her recovery more substantiated.

 

I know I sound a little cynical, sorry but that’s my nature. When I hear and read about these miraculous recoveries, I’m a little skeptical because of my personal experience. I don’t like sounding the spoilsport or party pooper, but we often read or hear about the end results without much attention paid to the basis or starting point. My guess is her greatest recovery occurred when she got up and out of bed and traveled to and from China with all the associated ADLs, as it happened most for me in my recovery. As in my case I think I could make a good promotional case for my HMO, cause I was a so-called basket case too, from day and week one. I’m not sure of the cost for my three year rehab services, but I would guess it would rival the acupuncture treatment of Ruth.

 

Thanks Tom

[BenHale]

Ruth currently has a DVD with some footage of the treatment in China along with some patients that she has taken. One of my goals working with her is to make a DVD that shows that starting and end results of multiple patients that she takes over to China . I am trying to sort something out with her and the people she has taken or currently has there to be able to show the improvements. I receive multiple updates per week from the wife of a patient currently there if some of you are interested in that (I am attempting to get her to post on here or at least agree to answer questions for people interested). If anyone interested in this program will listen to the podcast here, http://www.mickelson.libsyn.com/index.php?post_id=215828 (click the "pod" icon next to the May 17 date) Ruth has 3 other patients on a radio interview with her. That should help with some people that are a little skeptical or I can get you in direct contact with Ruth herself. I really hope that we can help some of you.

 

-Ben

[Phoenix]

:My Hero: Thank You Ben Hale for providing and sharing this information, as well as the want and desire to help other stroke survivors. :thumbs up: I'm a bit late but better late than never, WELCOME! to Strokenet! :signthankspin: :welcome:

[GeorgeLesley]

I wish to comment on the thought that just because a treatment is not available or recognised in America does not mean it is no good. My own personal doctor recently took her own child that has cerabal palsey to an acopuncturist at her own expense. I asked her about it, thinking of doing it myself, and she was favorable to it. Her comment was "my medicine has done all it can do". I recently completed a stretch of active release treatments in Canada at my own expense with great results.

 

As far as going to China, I would be rightfully skeptical and cautious, but if I felt I might benefit from it, I would certainly check it out with an open mind.

 

Our doctors and therapists don't know everything. If they did, I wouldn't have had a stroke in the first place. A final story: My doctor never talked to me about getting me a Saeboflex. I found it on the internet myself. Guess where I went for the fitting and therapy for the Saeboflex? A therapist who's office was on the same hallway in the same hospital as my doctor! The Saeboflex woke up my left hand and arm and was key to my recovery. I never would have heard about it if I had waited on my doctor to tell me, and I would still have a "claw" for a left hand and a curled up left arm.

 

We are told we "plateau" in three or four months. I personally believe our medical providers also "plateau" in their knowledge of what to do for us. They show us what they know, then have little else for us. It is up to us to find more, ask questions, do research, and get on with it.

[Guest thegoodlife]

Hello:

 

Can't hardly believe my eyes when I read your blog. It is right 'on the money' !! If it weren't for site like this and other support groups stroke survivors would not come as far as they have and could. It's good to hear others know that to listen and educate yourself is one of the best things you can do for yourself.

 

What you have done must be commended keep up the good work and NEVER stop researching for other things that help you---and of course share them with us.

 

The computer has become invaluble to me and others I am sure. Also, talking with others and learning about alternatives helps alot. Some things we learn are from sources you would never beleive could help-but-they do.

 

You deserve a :Clap-Hands: :Clap-Hands: :happydance: :happydance: for what you have done for yourself and others.

 

Thank you for sharing.

 

Nancy

thegoodlife

 

(The Good Life comes from hopeful, positive thinking and learning all these good things; plus being around nice positive people.)

[BenHale]

Thank you everyone for your support. Ruth (who is currently in China with patients) and I are going to discuss in the next day or two many of the questions raised such as previous patients to post on her and be able to get in contact and talk with everyone about their experience. I am also working to put the DVD that she has made about the program with some testimonials onto youtube.com but I am having a little trouble uploading it to the site so I will keep everyone posted on that too. Thanks for your interest.

 

-Ben

[BenHale]

As promised here is the link to Ruth's video

[BenHale]

For those interested in talking to a patient, I have the phone number of one patient and I talked to Ruth today and she is arranging for others to hopefully be available and possibly even post on this message board.

 

-Ben

[Cheryl and Ken]

My husband and I are currently in China. He had a stroke one year ago. We are almost finished with our three months of treatment and will return to the US in 2 weeks. We have enjoyed our time here and are pleased with the recovery. I am happy to answer any questions you have.

[lisas]

Cheryl and Ken,,

What kind of treatment did you recieve?? What kind of new results have you had???

 

How costly was your trip and treatment?? Please post when you can. I hope the trip was a huge success for you!!! :friends:

[myhome]

For those interested in talking to a patient, I have the phone number of one patient and I talked to Ruth today and she is arranging for others to hopefully be available and possibly even post on this message board.

 

-Ben

 

 

Ben,

 

I'm sorry but have to ask this, but are you an employee of Ruth's, or an employee of a company she or her organization has hired?

[Cheryl and Ken]

Ken get one hour in the gym every day, acupuncture twice, cupping, massage, and zhen xi (herbal soaks). He also get Chinese medicine in addition to the meds we brought with us.

 

His major accompishments are facial recovery (no droop), return of feeling, improved mobility of arm, softening of fingers (no longer a tight fist), and increased strength of his leg and ankle. He was able to walk with a splint or cane before we came.

[BenHale]

Don't be afraid to ask questions. Yes I am actually employed by Ruth. I heard about her through friends that had heard the radio broadcast of the linked podcast and after many talks and multiple family members reading the book and sharing ideas with her she invited me to join her to try and help spread the word. Too many people are told by US doctors that they should learn to live with their condition and we are trying to help open peoples eyes that they don't have to settle for that. For more detailed ideas of what is going on, Cheryl and Ken can explain many things to those interested in treatment.

 

-Ben

[mekelly]

Cheryl and Ken,

 

 

[myhome]

Don't be afraid to ask questions. Yes I am actually employed by Ruth. I heard about her through friends that had heard the radio broadcast of the linked podcast and after many talks and multiple family members reading the book and sharing ideas with her she invited me to join her to try and help spread the word. Too many people are told by US doctors that they should learn to live with their condition and we are trying to help open peoples eyes that they don't have to settle for that. For more detailed ideas of what is going on, Cheryl and Ken can explain many things to those interested in treatment.

 

-Ben

 

Fine Ben I'll ask a few questions.

 

First of all it looks like you're acting as a salesman for her organization with each of your posts, does she or her organization

get/collect a fee for booking people for treatment at the hospitals in China?

 

Stroke survivors are for the most part are getting by on a fixed income. They usually don't have $20,000 - $30,000 to go to China for treatment, so where do you suggest this money is to come from, morgaging their house, take loans out, borrow from family? Where?