The following is an excerpt of a report from one of our volunteer part makers who went on a distribution in Uzbekistan in April 2006.
Dear PET Directors,
Shirley and I were volunteers for Hope Haven International Ministries for a wheelchair and PET distribution in Uzbekistan in April 06. ….(A description was given of the many volunteers who came from around the world to help distribute 6 shipping containers of wheelchairs and PETs. They came from the USA, Ecuador and Uzbekistan)…. When the 6 shipping containers were cleared, they were taken to a Senior Center run by Samaritan’s Purse and unloaded. There was a combined total of about 550 wheelchairs and PETs. I’m not sure exactly how many PETs, guessing it to be close to 50. The units were stored inside the Senior Center and in a warehouse area at the end of the block. It is interesting to note that there were PETs from four of our assembly sites: Columbia, MO, SW MO, Penney Farms, FL, and Murfreesboro, TN. Mark said this was the first time he had seen PETs from more than two sites on a distribution…..
After the containers were unloaded, on Monday afternoon we went to a home for children with disabilities to make an assessment and get acquainted with the home and children. We went back that evening and fitted 23 wheelchairs and took them one child PET to use. Finished up there about 10PM. On Tuesday morning, we had a major distribution at the Senior Center. There was a line of people at the door all day. With just a small team to distribute and being very limited on space, we tried to limit it to only three “customers” inside at a time. Shirley and I put 5 or 6 PETs together and then switched over to wheelchairs. There were no PETs given away on Tuesday. This was still in Tashkent. There were wheelchairs of all sizes and shapes and for all kinds of disabilities. We learned a lot about wheelchairs that day. When we would get a full amputee, we had to offset the axle of the wheelchair to help them keep from tipping over backwards, several kinds of leg and foot the chair around the person using special supports, pads, braces and harnesses to keep the person upright and comfortable. We saw some very twisted and crippled up bodies. …….. We worked at the Senior Center all day and into the evening. I think it may have been well after 10PM when we finally turned off the lights. I understand we passed out 99 units that day. We were back Wednesday morning about 6AM and started loading two full size semis with wheelchairs and PETs. Both trucks were loaded absolutely full to the roof and right to the doors. These trucks then each went separate ways and dropped off their load at three different cities each. One truck went to the Southwest and one to the Northeast of Tashkent. About 9AM people started coming in for more wheelchairs and we worked till noon when our team broke into two separate groups. Our group, the five Americans and Shukrat and three interpreters went on about a 6 hour ride in a mini bus to the Northeast cities and arrived at Andijan that evening.
The other group kept working with people at the Senior Center till 7 PM and then they boarded a train at 8PM and spent the next 12 hours on a train ride to their next city. They arrived at 8 the next morning and found a crowd of people waiting for them, then spent the next couple days working with people in three different cities. They arrived back in Tashkent Saturday night and were headed for home when we returned.
We spent the night in a hotel and were taken to an area next that I can only describe as an old folks home. While in Tashkent we worked inside but from now on we would be working outside and the weather was clear but got well into the 90′s. Dehydration turned out to be a bit of a problem. We only drank bottled water and on Thursday that was in rather short supply. We tried to be more careful about being sure we had water after that. …….On Thursday we worked with a steady crowd of people coming in all day till dark. We put together and passed out about 10 PETs and a lot of wheelchairs. ……. The most unusual case of the day was a man in his 30′s who has the joints in his ankles, knees and most of the hip area frozen. They are stiff; he can not bend his legs. When they took him out of the car he traveled in, I thought at first someone was bring a life size cardboard cut out of a man. He was laying at an angle supported in the front passenger seat with his feet on the floor and laying at an angle with his back on the back of the seat back. Just like a board. To get him out it took three people, one in the back seat to help pull him back, one in the driver’s seat to help be sure his feet cleared the dash and one outside the passenger door to help turn him and pull him out side and stand him upright. He could hang on a pair of crutches. His feet (toes) were turned straight out sideways with the back of his heels pressed together. He could not use a wheel chair; no way to sit in one. So we decided to try him on a PET. It took about three people to try to fit him on one. His legs would not bend and you could only pull his heals apart about three inches. They just would not open anymore than that. So his feet were clamped around the front wheel of the PET and he was just propped against the seat. Mark was the first to come up with the idea of changing the seat. After a brain storm session, we made some changes. I changed the angle of the seat back, Dave stole some “L” brackets off a wheelchair and I put them on to help support the seat back. Then we found a special seat off a wheelchair and bolted it onto the seat back. The seat pad has a pommel on it and we fitted it so it would be just below the crotch of the person. We placed him on it several times as we make the adjustments and when finished, his feet set inside the PET and braced against the front part of the box, he leaned back and set on the seat with the pommel between his legs to help keep him from sliding sideways. He could bend his back and hips enough to reach the crank handles and away he went. He rode it around that parking lot and really seemed to get into the hang of things in a hurry. This opened his world up and he was mobile again. The down side of this was that we were all so happy this worked and felt so good for him and took pictures but none of us asked how this happened or got his name. But the pictures tell a story and I will share them soon. This was a Columbia PET we used. I would like to have had more bracing but it was not available. Also maybe the seat belt could have been moved to help but if he does have a problem, at least I think he can find someone to help fix it and maybe brace it better. The concept is there now. He was very happy with it as it was and eager to try it out. We worked till about dark and came back on Friday morning for a bit to catch a few people who either couldn’t make it on Thursday and who we just didn’t get to.
We finished up about 10AM Friday and then drove to Ferghana City. When we arrived, there was already a crowd waiting for us. We got the wheelchairs that had been delivered ahead of our arrival out and lined up then Shirley and I started putting PETs together again. We assembled several PETs and passed them out. Each time I tried to make sure that when a person received one I had time for a bit of training on the care and feeding of the PET. We went through the box of spare parts and tools and let them know about lubrication of the pivot area and chain and how to use the tire pump which some had never seen before. Glad to see solid tires on most of the rear ends. These were being passed out in an area where they can get repairs made if necessary and the technology is better than many of the countries where PETs go but still a problem can be a major thing for most of these people. Some I talked with seemed to be pretty mechanically minded and some of them just didn’t have much experience to work with. The more bullet proof we can make these machines, even in countries where technology is more advanced, it is so much better for the recipient.
We worked in Ferghana on Friday till dark then came back on Saturday morning for an hour or so to finish up a few who were missed. Probably our most unusual customer at Ferghana on Friday was an Uzbek man who had been recruited into the Russian Army when the Russians ran the country prior to the collapse of the USSR. His name is Hobibullo, which he says means “last slave of God”. He was sent to fight in Afghanistan. While there he was caught in an explosion and lost both legs above the knees. This was 22 years ago. He came in riding on a glorified skate board. It was a small platform complete with a seat belt and small wheels and he had a couple handles with rubber bases that he used to pull himself around to protect his hands. He has learned to deal with his disability very well. He was a very bright person and had a great attitude. ….. He wanted a PET and he hopped up on the seat like there was no effort at all. In a couple minutes he was zipping around like he had always had one. He was very appreciative of the PET, thought it was absolutely great.
We had another man whose mother brought him in. Akbar, is 44 years old. He became sick with what seemed to be a bad cold when he was two years old, the cold turned into a high fever that lasted for several days and when it was over he could not walk. We heard that same story from several people, again and again. It was the most common disabling problem we heard about. Most think this was probably a meningitis of some sort. Several of the people who received a PET and some of the wheelchair recipients we did talk to have the same story. In this man’s case, it also affected his brain and he has not developed past the mind of a six year old. His mother has cared for him all his life, all 44 years and it is getting much harder for her as she gets on in years. We put him on a PET and he was just so proud and happy and soon was driving it around by himself and doing a pretty good job of it. His Mother was beyond the word happy. Her happiness was beyond being able to adequately describe. One of the things we found was that when someone was given a PET and realized how it opened up their world they were very happy and appreciative but even more so was the person who was their caregiver. That person was usually the Mother but sometimes the dad as well or a grandparent. The caregiver was probably the most appreciative because it met not needing to carry or drag their son or daughter every time they moved. It let the caregiver be more independent and it opened up their life in some ways maybe even more than the actual PET recipient. These people want to try to give you something back for what you have just done for them and this mother was wanting in the worst way to do something for us. She was crying and shaking, just so filled with gratitude and feeling like she was so inadequate for not being able to give back to us. I finally told her that I would be very sure to share her gratitude with those who made the PET possible and let them know how much she appreciated her son getting this machine and that was all the thank you we needed. That seemed to help her find some balance but I want to again say that these people were so appreciative that it went beyond words. These people are very sincere with very real feelings and concerns. …… Life is hard for most of them. This man’s PET was made by Florida.
One other person at Ferghana I want to mention was a PET recipient who was born in 1944, Tursnboy. He lost his first leg in a farming accident in 1969 when a corn bin fell over on him. He later lost his other leg to diabetes. Both legs are off above the knees. He now has a PET built by Florida and he has one of the biggest smiles you could ever put on a face. After finishing up at Ferghana early Saturday morning, we drove to Namagan City about four hours away. We got there in the early afternoon and the crowd was waiting for us. We waded through the people and started getting the wheelchairs lined up and then Shirley and I started putting PETs together again. This time we put two PETs together built by Murfreesboro and gave them to two boys who were not related but came in at the same time. Ortikmirza is 15 years old. He had an operation several years ago and during the operation something went wrong and his nervous system was affected and he can not control his legs any more. The other boy is Odil, 17 years old and crippled with a birth defect and a bit of a mental problem. One of the stories we heard about birth defects – it is common practice over there for the midwife present at a birth to put her knee on the mother stomach and try to force the baby out with pressure. This has presented some serious problems for the mother but even more so for the baby and the baby usually get the worst end of it. Many times the baby’s brain is damaged or other physical damage occurs. There are those who are trying to stop this practice but it will take a lot of health training to get the message out and in the meantime, the practice is continuing. We don’t know for sure that is what happened to Odil but if you met him you would not rule out this possibility.
One other person I want to bring up is a young girl named Muhayo. She is 14 years old and diagnosed with Cerebral Palsy when she was just 8 months old. We put her on a PET to try out. She can not control her hands enough to roll a wheelchair along but we found she could make a PET go once she got hold of the crank handles. We let her work with it for quite a while before making a decision. She was all over the parking lot trying to make it go where she wanted to go. After she had worked with it a while, I got in front of her and encouraged her to follow me as I moved backwards motioning for her to follow. She was from one side to the other but she finally got so she could follow me around fairly well. She has a lot of trouble getting her muscles to do what she wants and steering the PET was a real challenge. We talked with her parents and we all felt that this might be very good therapy for her. She certainly was happy to be on it and was having the time of her life. What a great young lady and so determined.
I need to tell you about Islombek, a 10 year old boy who has not been able to walk since he was two years old. He was born with an open area on his leg. After many attempts to close it up he got gangrene and although they saved the leg it will never work. As he has gotten older he has been getting more and more depressed and his parents have run out of ideas to help him. His depression was getting worse. He can’t run or play with his friends and getting around at all has become such a chore for him and he has pretty much quit trying. When they bought him in it was not quite time for him to be worked with so he was set on a blue child PET Shirley and I had just finished assembling. He set on the PET for maybe half an hour and he kept pushing and pulling on the handles, working the brake, rocking it back and forth and looking it all over. When his time came, his mother wanted him to have a wheelchair because she thought it would grow with him and last longer. When they tried to take him off the PET, you could hear him crying all over the area. He wanted the PET. So we talked with his parents, told them about the PET and finally convinced Mom to let him try it out. When we told him to try driving the PET, he took off on it like it was made JUST for him. In a couple minutes he was zipping around the lot and down the walk and over the bridge over the canal and back and was so happy. His parents couldn’t believe it. His mom talked to him several times and then each time he would go zipping way. He and that blue PET were not going to separate. His mother said she has not seen that much joy on his face since she can remember. His world just got a lot bigger and he was out exploring it. His life just opened up. After I got through going over the care and feeding of his new PET with the parents and their boy went out for one more ride before heading for home, …..
We worked till dark on Saturday night. The last PET we put together was from S.W. Missouri and the person who was to receive it did not make it Saturday as well as some who where to get wheelchairs. So that PET and some wheelchairs were left for them and will be passed out by the people who were working with us from Namagan. We assembled two other S.W. Missouri PETs back at Tashkent on Tuesday morning but they went on the truck going to the Southwest cities where the other part of our team went and we, ourselves, did not get to pass out a S.W. Missouri PET even though we has assembled three of them.
…… All during this distribution, Shirley and I worked primarily with the PET part of the program. We probably got to talk to the people a little more that those who worked on the wheelchairs. We got to know a bit about several of them and they learned a little about us. They are great people. They are a very clean people and they all come dressed in their best clothes. They are a very grateful people. Some were more conservative than others but most were very open to us and so very appreciative. We were hugged on, kissed on and cried on. We received hand shakes and “thank you” beyond count. We were asked to come to their homes for meals so many times. We were prayed for many, many times and promised to have prayers said for us in their Mosques. The gratitude was at times just plain overwhelming, almost smothering. After a while we just didn’t know what to do with all the gratitude. They were so sincere. We wish we could have bottled it and brought it back. There was enough gratitude to go around to ALL the PET people. Even though we didn’t reach the poorest of the poor, we certainly did get to people who were in need. Wheelchairs and most any kind of mobility device is almost non-existent over there, …. If you get one thing out of this report, know that you were very much appreciated by some very sincere people who you will never get to meet; but they are real and have feelings and concerns just like you and I and they offer you a very sincere Thank you…
Ray and Shirley Truhn (volunteer part makers in Michigan, USA)