Jess, Jake & I are sitting in the kitchen listening to Macca and Hugh Lund’s book reading “Spies Like us” It takes place in Hong Kong in the 1960’s. He mentions going to the border between China & Hong Kong and looking from a hill top towards China and he can only see rice crops and a single house. I remember driving from Hong Kong into China 2006. There was nothing but huge buildings as far as the eye could see. We even passed a Chinese Disney Land. I wondered what they would say now.
Jill & I sat in the kitchen yesterday and talked about stem cells and China – after reading the latest email we had received from a fellow MSA sufferer currently undergoing his SCT and he has started to experience some minor improvements – but major in the scheme of things. It reminded us of our experiences in July 2006. We have been working on Jill’s registration forms for going to Hangzhou. We have been filling out a comprehensive list of Jill’s medical history and current condition. It has made making that final decision to go back to China a little more difficult. In the past couple of weeks Jill has succumbed to another UT infection and is back on antibiotics. She is on her second course and then we need to wait for another week for the results to come back – then we cross our fingers to whether it has been controlled. One of the things stem cells don’t like is infection or antibiotics as an active infection will “confuse” the SCT so to speak. If you get an infection during the course of SCT you are put on hold and must wait until the infection is clear. This obviously means a longer time in China.
We have spent the last few weeks discussing what we should do with family members and they all will be behind us what ever our final decision is. As I have said before this is a major decision for Jill – she is the ONE who has to take the stress of travel, the SCT, the physio and being so far away from family and friends. I am there as a companion and carer who is also emotionally affected. I think that the decision is still a couple of weeks away.
All of this has not stopped Jill from exercising – with the cold weather she has been a bit restricted down at the netball courts , but we have been a couple of times and she is walking using a single crutch and my arm. A few weeks ago after a walk my arm felt as though it would drop off. Yesterday her grip was much lighter and she found walking much easier. Jill’s Gym still gets used with concentration on walking style and balance and the Crazy Exercise Machine still gets its daily work out. She is still embarrassed by her speech but we still use the Vocastim machine and the vocal exercises. I am convinced that all of this exercise has helped maintain Jill’s condition.
The Question still remains – “would we have been able to do any of this if we had not had the SCI in 2006?” I am certain we would not!!
See you next week on the net