My father's grandfather, Dr. Edgar B. Hands, was a wheelman!
Start of 2-mile Open, Castalian Springs MS in May late 1800s
The Morning Wind forever blows
> … At another gas station in Rayne we met Josette, she wanted to take a photo of the wording on our tops “Impossible is nothing” to send to her brother Adrian who suffers with ALSUnfortunately, it seems I brought them little luck:
>
> Adrian was a keen cyclist and is unable to cycle now due to ALS. However he is in India having some stem cell treatment. We wish him well and hope he is able to get back on his bike. We will devote tomorrows ride to Adrian and wish him all the best for the future. I have copied and pasted “What is ALS?” from the ALS website.
>
> When I hear about people like Adrian, it reminds me how fortunate I am. It makes me appreciate all the things I am able to do, especially the little things I often take for granted like walk, run, cycle.
Sean and James are both in hospital after being hit by a truck in Louisiana.http://CycleAcrossAmerica2010.com/
Sean is in surgery now with a broken back, pelvis and other injuries, James has lots of road rash possible broken ribs, stiches and minor injuries. Your messages of support for both the lads and there families are greatly appreciated.
We will keep you updated.
Summary:
Adrian Hands came to Delhi, India, after researching many stem cell centers and after undertaking many difficult prior steps and a hazardous journey.
Now he has had two months of stem cell treatment and can report great progress. He is off the ventilator, though still on the bipap. He is able to breathe unassisted for upto three and a half hours. He is now able to stand for up to ten minutes with assistive devices, and able to work with his right hand for eight hours without reporting fatigue.
In these two months Adrian had daily intramuscular injections and IV infusion of human embryonic stem cells (from a line of cells reproduced from a single rejected embryo discarded by a fertility treatment). Some of the injections were "deep spinal muscle" injections closer to the back bone. Adrian had two "procedures" involving epidurals to deposit stem cells near the spinal column, both in May.
May 25th was also day one of Adrian's new life. The three to six months he was told he would survive without a ventilator ended May 24.
He can potentially have another series of stem cell treatments as early as August. We are thinking of continuing on here to fully participate in these treatments, though it poses many new challenges and difficult decisions.
The staff and leadership at the clinic is phenomenal and professional, showing excellent analytical strength and limitless compassion and treating all with kindness and dignity. There are no words to express our appreciation for all their support and encouragement, and for the greatest gift of prolonging life for Adrian.
We think Adrian will continue to improve, and be all right in a few years. We definitely now know he will survive. Since he is going to live, Adrian strongly desires to bring back the functional capabilities that will make his life more productive and enjoyable. Adrian has had excellent progress, and we will be continuing the stem cell therapies in India.
Below is a timeline (extending a little beyond the time at Nu Tech, followed by journal excerpts.
TIMELINE:
| Feb-Mar 2005 | Adrian's symptoms identified as possible ALS |
2005 – 2009 Jan 12, 2008 | Tried a GREAT MANY potential solutions Biked 200km brevet in Florida |
Nov 24, 2009 | Clinic visit; bad news – choose tracheostomy or 3 – 6 months life expectancy |
| Dec 26, 2009 | Decide to explore stem cell therapy at Nu Tech; Spoke with Dr. Geeta Shroff; she recommended tracheostomy before travel to India |
| Jan 10-17, 2010 | Explored Mexico options; decided on Delhi, scheduled tracheostomy |
| Jan 24 | Adrian admitted to Duke Med for Tracheostomy and Ventilator |
| Feb 1 | After one week of struggle, breathing ok on ventilator |
| Feb 3 | Adrian speaking and swallowing normally |
| Feb 8 | Adrian is mobile with the ventilator, we go to World Peace Prayer |
| Feb 16 | Adrian is back in the hospital – pneumonia not gone |
| Feb 17 | Stable; Heart catheterization shows no damage to heart despite heart attack evidence; "Do you see anything, Bob?" |
| Feb 24 | Home again; preparing to travel |
| Mar 3-4 | Travel to Delhi |
| Mar 8 | Patient Meeting, and meeting with Dr. Shroff; have to be free of infections to start stem cell therapy |
| Mar 9 - 25 | Antibiotics and lab tests: TLC 13, 14, 16,000! |
| Mar 26 | Bronchoscopy and bronchial lavage; TLC 19,800!! |
| Mar 29 | Considered going into hospital for strong antibiotics; TLC decreased to11,500!!! |
| Mar 31 | TLC 8000!!!!! |
| Apr 1 | Started stem cell treatment; saw immediate changes |
| First week | Changing positions causes secretions to plug lungs; desaturation; suctioning |
| First week | Stronger grip; no clammy skin, change in expression |
| Second week | Work on breathing without ventilator; Apr 18 Adrian is off ventilator in the daytime |
| April 19 – 21 | Worked on nighttime breathing on bipap rather than vent; two nights successful; one night required three hours of vent, then he was off vent at night |
| April 22 | Adrian to try standing; instead takes off bipap and breathes on his own for an hour! |
| April 22 – 29 | Work on replacing the trache tube with fenestrated, smaller one suited for nasal breathing |
| Continuous | Try to work on getting the orthotic devices needed to support standing |
| May 12 | First procedure at Gautam Nagar |
| May 13 | Gaurav reports Adrian is bearing his own weight while standing |
| May 24 | Adrian's re-birth-day (six months from neurologist's prediction) |
| Week of May20 | Adrian can do OT pegs with ease |
| June 2 | Stem cell treatment ends |
| June 5 | Adrian is able to stand with calipers and walker, 2 – 3 minutes two times day |
| June 11 | Adrian stands for 10 minutes at a stretch (after a couple of days of two 5-min) |
| June 12 | Visit to clinic; physio assessment shows decrease in upper body strength |
Some journal excerpts:
April 1 Adrian got a first test dose and we saw some changes immediately -- strong fasciculations and stronger grip in the hand which received the stem cells (right arm), less clamminess in the skin and a clear but subtle change in his expression.
Mid April (18th) Adrian is on the bipap (off the ventilator) all day and uses the vent only at night. As soon as we can get some attachments for the night time bipap mask, we will try that at night, and, after Adrian is comfortable with that, we will remove the trache and put a placeholder (cuffless) trache. All this could happen in a matter of days.
The doctors do not feel comfortable doing the larger procedures that for many patients started in Week 3, but want to wait two more weeks; I am hopeful that even with the level of infusions he is getting he will make fantastic progress; and that they will decide to do the lumbar puncture, epidural, etc, as soon as safely possible.
April 21 - As it turned out, we weren't able to get the attachments for his nighttime mask (he didn't like this mask anyway – it make it difficult for him to speak) and he is using the daytime mask at night as well; we will find out about changing out the trache tube.
The walking goal is harder: his back and legs seem stronger, but he has to be able to hold his head up while walking. It will be good if his arm strength improves enough so he can lean on a walker for support We are not giving up.
***
Yesterday, April 22, Adrian was to attempt getting on his feet. He had challenged himself to hold up and balance his back, neck and head and had succeeded in doing so at least for short periods, and was getting ready to try to stand up, while we are still working on aids such as a neck brace that will provide further support.
In the meanwhile we were in the clinic yesterday after two sessions -- PT and OT -- when Dr. Asheesh Verma came in and asked how Adrian is doing. He was particularly interested in changes in breathing. (As you know Adrian has been getting off the vent and breathing with a bi-pap (through the nose) for the last few days, and more recently at night as well. )
As part of reporting to Dr. Verma, Adrian took off the bipap as well, and breathed on his own for a few minutes. Later in the PT room he did the same and was timed for an hour. The suggestion from the docs was to continue to breathe without assistance when relaxed or distracted to allow the natural process to take over and to allow the exercise of the appropriate muscles.
Adrian is feeling a little exhausted by this prospect though he was able to breathe on his own for 45 minutes early this morning before asking for the bipap again. The victory is that Adrian seems to be off the ventilator, and is able to be off the bipap for short periods. The enticing possibility that Adrian will be able to breathe ongoingly without assistance. This is not a possibility we were even really considering before this. We will approach it cautiously and try not to strain Adrian, while "going for the gold". We will replace his trache with a fenestrated trache, more friendly for nose breathing, soon. We haven't forgotten about the walking goal.
April 30
We are in the home stretch of our therapy at Nu Tech Mediworld. We came with a ventilator and pneumonia, and have seen clear improvement in that Adrian is comfortable without the ventilator (but still uses the nasal bipap). He is able to breathe without bipap but he feels it is a lot of effort and is not satisfied to do so. The clinic folks have backed off from the walking goal, saying breathing is more important. We are still trying to have Adrian stand for brief periods with support at home.
As of May 13, we are still challenging our goal of Adrian being able to walk, even with assistance. As of yesterday and today he is able to bear his weight on his legs and feet when helped to a standing position, holding a walker, cane etc, Today the therapist said he is standing on his own (with the walker, but without the therapist's support). He is also able to lie down for some time, though he usually needs a suction as a result of changing positions. We are determined that he should be able to stand and walk, and also for him to gain the full benefit of the therapies offered at this clinic.
He has kept the subtle improvements we noted in the initial weeks, but is dejected that he does not see a clear increase in functional capability yet. At the same time breathing on his own and walking with support seem risky to him, understandably.
He has another large treatment (his second) on Tuesday May 25. We need to see clear functional improvement.
The docs had told him on November 24 2009 that without being on a ventilator he had only three to six months. May 24 will be six months -- from this point each day (off ventilator) is a bonus.
Early June - Adrian has finally been able to get to standing and using the walker (the knee calipers are now able to be used correctly). He was initially standing for a couple of minutes; this stretched to two five minute sessions in a day, and most recently he stood for ten minutes at a stretch. It appears that he has the strength and therefore can stand with the necessary equipment.

Archive-URL: http://search.bikelist.org/getmsg.asp?Filename=classicrendezvous.10412.0324.eml
Date: Sat, 04 Dec 2004 08:53:17 -0500
From: Doug Fattic
Subject: [CR]FW: The Ukraine bicycle factory in Kharkov (too long)
John Thompson wrote:
"That's cool. I remember when I was over there in the 70s the Russians had a big bike factory in Kharkov. I wonder if it's still working? Most of the output was awful Soviet copies of Western consumer-grade crap, but IIRC, they did have a hard-currency store where you could buy some decent stuff like tubular tires from Czechoslovakia and the GDR."
Toni Theilmeier wrote :
Dear John,
I think I need to comment on your remarks on Soviet cycles from Kharkov.
These generally were regarded as the better ones during Soviet times, opposed to those from Perm which really were horrible. I have had several Kharkov (XB3, G.I. Petrovski Cycle Works in Kharkov) cycles as well as some from Perm, inside as well as outside the SU, and I must say that I admire those people who had to make do with either.
I once met a chap who cycled all over Central Asia on his 1979 XB3 model 155-411 "Start-Chaussee" racer. I've had this very bike for ten years now, and it never fails to draw attention when there are visitors in my dungeon, especially when I mention it has seen the deserts of
Kazakhstan and the cities of Bukhara and Samarkand, amongst other places. Also it has a big red decal on the seat tube showing the 1980 Moscow Olympics symbol.
I cannot agree with your idea of the cycles being just "consumer grade bleep". One thing which I find to be a nice touch is that they had "XB3" on most, if not all parts (racing models), meaning that every part of the
cycle, save chains, tyres and lights, were made in-house. Something else is that the Kharkov engineers copied only the nicer bits of western cycles, like Campag Gran Sport, MAFAC brakes and so on.
I do agree that most models were rather inferior in build quality to what we are used to. Why this is so is a political matter not to be discussed on-list, I guess.
Yes John, that factory is still working and I played a part in keeping it open too. And thank you Toni for keeping this thread alive so that I — the undisputed list authority on the bicycle factory in Kharkov, Ukraine (close the the Russian border) — can share some of my experiences of visiting there 7 or 8 times in the last 4 years. Toni, we have in common more than just the ownership of a Johnny Berry frame (who in my opinion was the best of the British builders before he died in '74) but a Kharkov bicycle as well. I wish I could also share in your ability to speak Russian. Of course this post might wander a bit off list subject (more likely a lot but never mind) but I am going to give it a shot anyway to see if I can slip it past that Soviet style censor. So understand that if you read, in the middle of a sentence, the words "my 1969 Hetchins" or "my 1972 Masi" and it makes no sense with the flow of thought around it, I am trying to trick the big boss in charge of keeping order (at the expense of freedom of expression) I'm on topic. If I get caught, I will plead that Ukraine is big in the news right now and that in free America, we want to get first hand inside information about our sport and how it might be affected by current events. Today (Friday), in the South Bend Tribune, there is an article about what impact the political situation in Ukraine has on local people connected to that country. My name is right there in the beginning of the article about our bicycle project and they quote an e-mail from the secretary of our project in Kiev — who, by the way, could ride most of you list members into the ground. Hold your breath, avoid eye contact with Dale, and here goes:
One of the goals for our Ukraine Bicycle Project was to spend as much of the money we had raised for the bicycles we need in the country itself. This meant purchasing bicycles made in Ukraine rather than buying them in boxes from China. Well this factory in Kharkov was established in the 1920's and at one time made most of the bicycles used in the former USSR. They claimed to have made over 1,000,000 units a year at the peak of there production. After the switch to capitalism, this company had become a shell of what is was before.
In June of 2000, our team went there to negotiate the possible purchase of 200 bicycles for our pastors. We were ushered into the president of the company's office and the various models are lined up for us to choose. Like Toni said, they made all of the parts for those bicycles right there. He was proud of the company and asked what I thought. This is where the challenge to my ethics began.
The thought running through my head at that moment was they are all just crap and the only reason we want to buy from them is because of obligations. That wasn't, however, what I finally was able to say. We chose a ten-speed model (rather than an eight) that was suitable for transportation and carrying lots of stuff. At the time, all the factory workers were home on a forced vacation because there wasn't anybody buying their bicycles. So we place our order and they ask for 70% of the final cost as a down payment. This was necessary they said because they had to negotiate with the government to turn on the electricity and gas. I was sitting there thinking, "this is crazy, what am I supposed to do? What is standard negotiating practice?" I am looking at the Ukrainian guy on our team and he is just looking back at me wondering what was my call. I pushed aside my instinct that 50% was more than enough and gave the approval. At the same time thinking that the committee back in the states that oversees the project will kill me for such a rash act with donated funds.
But my call turned out okay and a couple of months later, the bicycles were built and ready for distribution. The memory of watching those workers loading our bikes onto the truck really left a powerful impression on me. They are probably paid about $50 a month and really seemed in need (actually inbred West Virginians that have never left the holler was my first impression but don't quote me. In other words, a job that the many highly educated and talented Ukrainians don't apply for). I couldn't imagine how they could survive when they go on "vacation".
The next week, I traveled to different cities where we gave the bicycles to pastors or other church workers. I explained how to properly set the bicycle seat and handlebar height and do a little repair and maintenance. At one of the churches, there were a lot of pastors present and the women of the church fed us a very terrific meal. I thought this is great food and there is an abundance of bicycles around, throw in sleeping bags and this has all the makings of a bike tour. We just need to ride to the next church. That is how the idea of our fund raising bike ride got started. Our first one was in 2001 and we completed our 5th one week long tour in 2004. It is by far my favorite week of the year. It can be yours too. Our out-of-date- website is: http://www.neocm.com/Ukraine_bike_tours/
That was just the beginning of my experiences at the Kharkov factory. I wanted them to make more than just improvements to our bikes, but to the factory itself. It's kind of cool that they make all the parts there but that idea alone has no chance in today's world economy. What would you buy when looking for a bicycle? A frame with Shimano equipped parts or copies of 1950s parts? Well, list members are not a random sample of wants so never mind but no one would argue that a company dies when it doesn't keep pace with technology.
KLM stops in Holland on the way home from Kiev and I made a point of visiting Shimano Europe. I was fortunate that I had won the latest Shimano sponsored contest of best bike at their booth at Interbike and they knew who I was. I asked the big boys and they agreed to help me (I kept my personal Campy equipped bike out of sight) both with getting parts from them to put on Kharkov frames for our project and for them to visit the factory itself to explore marketing possibilities. They thought that Ukraine was not a market ready for them yet. I explained my experiences looking all around Kiev at almost every bicycle shop for our needs and had a reasonable understanding of the market and the situation at Kharkov. They agreed to go.
I timed my next visit to Ukraine to coincide with when the director of Shimano sales for all of Europe as well as the guy in charge of sales in Eastern Europe would visit Kharkov. This visit was a personal illustration of the differences between Western and old Eastern thinking. As luck would have it, I convinced a personal Russian friend of mine - that had inspired me to get involved in this project in the first place - to serve as my translator. He received his PhD at Andrews University (were I got my degrees) and now taught in Russia. His thesis was on a twenty year period of Czarist history in the 1500's when the Czar promoted a seventh-day Sabbath (of obvious interest to a Seventh-day Adventist). This idea went out when that Czar lost power but lets kinda get back to the subject (or at least pretend to) and not really, really annoy Dale.
His (my Russian friend's) hobby is making amateur films and I wanted some documentation of what we were doing. He agreed to come. Now the setting of the story is that we are waiting at the factory for the Shimano guys to show up and making small talk with the various department heads. Most of these guys are really good people but I just couldn't/can't stand the director in charge (a change of personnel from our first order). He's the boss from hell.
Something made people scatter from the director's office and while we are waiting in the hall, our translator overhears the director talking to someone on the phone. He is wanting to know who Shimano is and what is the value for them being there? I couldn't believe it?! Their very salvation is dependent on the negotiations about to take place and he is so uniformed and ill prepared! Of course bicycles may just not be what his responsibility is but just a cover but I didn't come to spy. We wait again in the office nibbling Russian chocolates and Ukrainian sweets.
Things get interesting when Shimano arrives and the meeting begins. The big boys gives the company guys the news first hand that over 90% of all bicycles made in the world are equipped with some Shimano parts. They explain that it is possible for them to order directly from them and save the middleman charges. Immediately the young Kharkov salesman asks how much of that saved money has to be kicked back to them under the table for the privilege. The Shimano guys smiled and assured them it was all theirs and they work above board. Shimano also wanted to know their marketing strategy and manufacturing abilities.
During this presentation I saw the need to give some advice as powerfully as I could. They needed to make what customers wanted and not what they wanted to make and hope it sells. I mean, this seemed too obvious to mention - the different approach to manufacturing between Capitalism and Communism. The head Shimano guy was really backing me up and saying "yea, you really need to do that". Everyone seemed to listen except Comrade Director who probably was wondering if the cost of those chocolates was a waste on these Shimano guys unless some were left to take home for himself.
Hmmm, I see that I have written too much and nobody will still be holding their breath. For the two of you left that have read this far (one of whom might actually speak English but hopefully does not have the first name of Dale) I will mercifully come to an intermission. The short version of the rest of the story is that the Director of the factory didn't want to bother with a new order for us once they started to get busy after equipping their bicycles with Shimano parts (you're welcome, thanks for remembering what I did for you).
Now we are going to make frames ourselves in Kiev. With some confidence in these readship numbers, I think it might be safe to make an offer. Like I mentioned, my Russian translator/inspirer made a video of our project including going to the factory and taking pictures inside their interesting museum. I was a little uncomfortable with it because it was a little too much about my efforts (I'm not kidding) but it's what we have. We also did a video of our bicycle ride. Copies of either of these can be made available. Contact me for more information (read: let me figure out how to do this in the meantime out of the 2 copies I have). Someone might be inspired to help with this project as well.
Doug "always give me the short version please" Fattic
Niles, Michigan
269-684-6761
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