Posts filed under 'Story of treatment'
I got my last (6) IV Injection today and tomorrow I will fly back to Shanghai for 2 weeks before I will return to Germany. I still could keep my muscle power in the legs stable. The hand power becomes not in a bad repair but it also becomes not really better. So I think I have to do more exercises with my hands. The last day’s the fitness increased were not so much then the days before and I guess I reach a target level and it is more hard work to increase more during the next weeks. But I’m still satisfied with this level and if I could hold it for several months I would be happy. Now I feeling the curve of health go up and I find one way to fight against my disease. Without this treatment I think I’m still sitting in a wheelchair now. So if my life and my power become stabilised the next month I plan to come back to Qingdao for a further treatment in September 2009. Like the growing of stem cells inside was the friendship I found on this place over all nations. Thank you to the doctors, staff, nurses, translators and administration from the Hospital and Beike for that and your professional help.
I enjoyed everyday and I’m quite a little bit sad to leave this place witch was helpful and secure for me and my daughter. I love China and the people and I will never forget what they have done for me. If there is no more improvement for my muscle power I’m also happy to have gone this way of treatment because I think it is one option to steal time from the death and may in some times in future there will find cure against this disease. If you think about to start for this kind of treatment in future don’t’ think about what all could happened in this unknown country, think about what they could do for you and become a relationship to the grateful people of china and this wonderful country.
January 23rd, 2009
Now it is time to say thank you to all the people who supported me during my staying in a wonderful kindness way. I have got so many professional help from the doctors and therapist and so treasured and considerate care from the nurses and translator that is quit difficult to describe this feeling in a few words. But this is also a job I have to do because I would like to order a banner (English, Chinese) which descript my emotions on limited space. The friendly way of communication over all the patient with different nationality and according to the “staff†make me deep impressed and the word “Beike family†descript this in the best way. Thanks to my company ThyssenKrupp and to my bosses Klemens Bransmöller and Jürgen Baum also to our local company doctor Mrs. Berkenfeld who encouraged me to do this trip and supported me in any way. But all this is less without having always contact to my hometown where all my friends make me laughing by different E-Mails even on the day’s I was not so well and I could need his information to become better. Thanks to my friend Cat, my Chinese Girl, without here I would not had the power and I would not find out this place. I got all from here even my new life and my love to china. Thanks to you Julie my second Chinese girl for your care and you’re never ending helpful way. If I have some more got and healthy day’s I will come back to china may I will find the peace and quiet I missed for a long time during my new live. My wishes for you Lucy please hold on your brave and big hard and your sensitive character and make this to your strongest point. You were / are the lightning star for the entire patient and I will never forget you. Thank you to Sophia my daughter who takes so much care of me in these difficult days and supports me here and in Shanghai to make my stay everywhere comfortable and secure.
January 18th, 2009
I have got my 4th injection on Wednesday 2009-01-14. The procedure is in my case quit easy. Sometimes 2 more previous Lumber puncture are made to find exactly the channel of the back for the final stem cell transplantation. The lumbar area is divided to section L1 to L5. The injection is given between the section L2/L3 or L3/L4 depended on the space in the section. You are lying on you left side and your spine is buckled because your legs are tightened. After may 5 minutes everything is done, by normal going.
After the first LP I have got some problems with my muscle on the left side. It needs 2 days after the pain were gone. The next LP I have got no problems and no pain so I feel until now quit fine. My muscle power increased during the last 10 days. May it is the combination of Stem cell treatment, Acupuncture, Physiotherapy and my additional training on the jam. I can now walk the Stair line (up/down) with additional weight on my legs without using my hands for support. Also I’m able to walk over the hurdles line (7 pieces in line, highest by 25cm) without help only with safety guide by my side for 10 lines. Today I’m feeling that my hand power becomes better and the fingers are more flexible as the days before. My walking becomes also more save and powerful. It is not longer like walking as a wood plate. It becomes more movable but the speediness is until now quit low because I have to be careful. But after all I think to beet the illness you have to do lot of Physiotherapy to keep your muscle elastic. So after laying in bet it need several time to make the body movable and I fell during the day after all exercising it becomes better even if you feel quit tied. Now as additional treatment I start to take vitamin B12, we will see how it works. I will say thank you on this way to my Physiotherapist Tom and all the doctor specially Dr. Tonny who speaks very good German and to the nurses and translators who are always helpful, careful and polity during the hole days and night. That all make my stay here in hospital secure and comfortable and I enjoy every day because I guess his treatment is one way (may the only one) to beet against ALS nowadays.
January 15th, 2009
The first injection (IV = intra venues) I got on the 31 Dec 2008. It was not a big thing. A port was set in the morning and in the afternoon two bag of fluid, one previous water and second the stem cell fluid dropt into the port. It needed one hour and then it was done. The day after the treatment I felt more powerful in my mind and I got no bad influences. But to think you can fly is a fault because this kind of treatment needs time to grow up. My first lumbar puncture I got on the 5 Jan 2009. I was a little bit scare about the LP but it is easier like it sounds. So the same procedure likes IV starts. First the port was set in the morning. Then you have to stop eating and drinking 3 hours before treatment. One hour before injection you get the first bag of previous fluid. Then you are going upstairs (lying in bed) to the special room. Everyone is nice, polite and nice music is playing. You get some small injection true the port first and feel a little bit sleepy. The point on your back for injection is now prepared by the doctor and get disinfect. This dismayed me more then the injection itself. You get a little amount of stem cells like turbo boost directly in your back and the rest is drop by the port after the injection on your own room. Also the rest of the previous fluid will be finished. The injection procedure needs 20 Minutes and it is easy going. When your are back at your room, you have to lie flat on bed for 6 hours and that is really a long time. During this time I have to pee 2 times and I have not drunken so many before. I guess it depends on the previous fluid. Now, the day after I feel quit tired in my muscles and my head is a little bit foggy. I did my exercises (Physio therapy) and I walk over a line with hurdles without close help. Last week when I started I would have break my neck, so something is going one. Today I sleep a lot in the afternoon but now I could not sleep and so I write down my impressions. When I lay in my bed the part with the powerful muscles hurts me again (bum, thigh, calves). I think that is a good sign because these parts are the first one who gets new impulses by the nerves (hopefully). After one hour also this little pain was gone. I think after the lumbar puncture you have to be careful working on for e.g Laptop. After a wile I get headache in case of the injection. But this is also temporary and will disappearing soon.
January 7th, 2009
I arrived in Qingdao on 29 of December 2008.
Sophia my daughter supported me to the Pudong Airport Shanghai. Then I was walking by myself to the gate. It was a slow walk and I have to use my walking stick like I do during the last 8 weeks. Some Chinese people helped me to pass the moving stairway and to clime up the gangway to the aircraft. In Qingdao I was the last one to keep the luggage from the luggage belt but there was also one guy how helps me to keep it. Then Amanda from Beike picked me up and it was an easy going because I was supported the whole time.
For every thing I need a lot of time because I can walk only very slowly and care full. My hand power is quit low and I get problems to open some cola bottle or open some packages. To take a shower is hard work because I can’t move my arm up so high and also is difficult to reach my back or my feet’s. To close a shirt with buttons is a special work also to close the central button of my jeans. No power at all. Typing on the laptop becomes more difficult because my fingers are not longer so flexible and I’m an IT guy. That hurts a lot.
After the first 3 Day’s with physio therapy, electro wave therapy, acupuncture and 1 stem cell injection (IV) I fell quit good and walking becomes a little better depending on the PT. The staff and doctors are great in this place and you get always a helping hand and nice conversation. Thanks’ a lot to all members from my 8th floor.
January 1st, 2009
I have been several times in Shanghai. I started 2003 when my boss asked me to develop and support the German IT system for our partner company SKS (Shanghai Krupp Stainless).
Thank you by this way to the best company ThyssenKrupp and to my Boss Mr. Bransmoeller to give me the responsibility for the IT software engineering.
During my work in shanghai I meet a beautiful famous actor in my living hotel. Her name is Cat and she has a marvellous voice. After some journey’s I took my German college Martin with me to shanghai because he asked me to support me by the project and I was thankful for his help. He and Cat becomes a couple and we all become friend.
The project finished in 2006 but we still kept in contact. When my wife died in August 2008 after a heavy tumour (lymphoma) my daughter Sofia und my brother Jörg pressured me to go to shanghai for vacancy again. I still got my illness (ALS) witch was also diagnosed in July 2008. The symptoms started in December 2007 but I never kept in my mind that I got such kind off disease. After one trip to Mobile, Alabama USA in May 2008, I recognized that I could not follow my colleges at the airport by the fastened they were walking. So I went to my doctor and after a short research he sent me to hospital for check out. These were not good news what I got.
So my brother Jörg, Sofi and I travelled to Shanghai in October 2008. It was a good time and Cat, Martin, Jörg and Sophia take care off me the whole time because my walking was not really in balance and my muscle power increased a lot. I used some traditional Chinese medicine with the helping hands of Cat and she bought a magazine witch she never bought before and found some article of the Qingdao Hospital working with stem cell treatment. She got in contact with the doctor of the hospital and I sent my documents to the facility supported by Matthew (Thank you for your help).
I flew to Shanghai on the 15 December 2008 and travel to Qingdao on 29 December 2008.
My daughter Sophia supported me during my stay in Shanghai and she also will visit me in Qingdao. Thanks to Cat and Martin for the room and rest in shanghai and also to my entire friend from Coconut Bar Shanghai.
January 1st, 2009
