The flight home was long but uneventful. All of our flights were on time and so we had no trouble making our connections. The Air line staff on the flights and at the airports were very helpful and provided us with excellant service helping us get to where we needed to be.
We spent our first week at home getting used to the unpacking, getting used to the time changes and getting over the jet lag. Christine bought some Melatonin which we took just before bedtime and this seemed to really help us to sleep the first few nights we were at home. We didn’t get much sleep on the trip home so it wasn’t too difficult to go to sleep when we got home and then get into a routine here.
I am feeling good and am walking OK. I feel like have a bit more feeling in my feet and legs. However my balance is still poor as my spine seems to be way out of alignment from my neck down. We have been looking into the Atlas Orthogonal chiropractic treatment. It has to do with the Atlas bone at the C1 vertebrate. If this is out of alignment your shoulders appear slanted when standing, your hips are out of line and one leg seems shorter than the other. I have all of these symptoms and have been wearing a lift in my right shoe to compensate for the leg shortness. I feel that if I can get this corrected that I will have a good shot at walking without my cane or at least walking with much effort with it. We have found a chiropractor that does a treatment like this so are planning to investigate that further next week. If anyone is interested in this procedure/treatment you can find out more information and watch a video about it on Montel Williams website or you can also go to www.nucca.org Another website is www.c-1.com
May 18th, 2009
Happy Mother’s Day Mom. Hope you had a really nice day. Christine and I slept in a bit and after breakfast we decided to go to People’s Square. It is a beautiful park just a few blocks from the hospital. It is filled with flowers and trees all manicured and very well taken care of. We took lots of pictures and explored the whole park walking along the river and under the trees along the walking paths. We took lots of pictures and had lots of fun setting the timer on the camera so we could both be in the pictures. When we left the hospital it was a balmy 24 C and when we got back at 11:30 it was 34 C. We both had red cheeks and legs.
After lunch Christine spent most of the afternoon packing and then we visited with some of the other patients. One little boys (Marcos) had his 2nd birthday today so we all had birthday cake in the lounge. We have said our goodbyes to most of the other patients and some of the nurses. We are packed and ready to go home.
We would both like to express our gratitude to all of the nurses, doctors, physiotherapists, the interpreters, patient care representatives and the ladies that do the cleaning. They all went our of their way to give us the best care possible and to make our stay here as comfortable and enjoyable as possible. They all do their work in the most professional manner and are always smiling. As busy as they all are they are never to busy to smile, say Hello, answer a question, give someone a helping hand or just stop for a few seconds to inquire how you are feeling. We will miss them all when we go home.
May 10th, 2009
I received the final stem cell treatment by spinal injection on Wednesday. It went really well. I felt the needles for the freezing but never felt the needle for the spinal injection. Usually there is a sharp sting and a slight pressure on your back which lasts for a second or so but not this time. I still had the usual side effect of the muscle spasms in the back of my thighs on Wednesday night and Thursday so did not have a strenuous workout at physio on Thursday. Friday was a free day so I did a bit of walking, some standing therapy, 20 minutes on the exercise bike and some electo wave therapy.
Christine is starting to get our suitcases packed up as we leave on Monday morning. I’m sure many of you are wondering, Did I have any improvements? The answer is yes I have noticed some changes. Most of these changes are small and some seem to be quite subtle but I believe they are significant and if they continue will make a difference.
The doctors have indicated that they feel that the progress of the MS symptoms has stopped for now and that I have made some progress in the other direction. However they have also indicated that since MS is a progressive disease this progress could slow, stagnate and reverse in the future. I believe that if I continue to exercise and do physio therapy that I will be able to build on the progress I have made this far.
When I first arrived here the muscles on the inside of my legs were quite tight and my legs always wanted to cross. The result was that when I walked I kept kicking myself in the ankle and with each step my feet would go in a circular motion. Now those muscles do not feel as tight and my feet have less of a tendancy to cross over. Also when I stood up straight and walked my lower back would quickly get sore. It would develop a dull ache which of coarse would take up more energy when I walked. As this occured my steps would get shorter and shorter and then as I got tired it was more and more difficult to lift my feet. Now after treatments I find it easier to stand up straight and walk and I can take longer steps without using as much energy, so I can go farther before I get tired. I can sit for a longer period of time before my lower back and legs get stiff and it takes less time to recover from this stiffness when I do get up. I also feel like my bowel and bladder control has improved again. Lastly my feet and legs feel like they are more sensitive to touch and my feet have a healthier color so I believe that the circulation in them is improving as well. All of these changes seem small but when they are combined they all become significant and create a much larger impact for the better.
Saturday will be the last day that I have physio and accupunture. Then our focus will be on packing and saying farewell to the many friends we have made here.
May 8th, 2009
Back Stretch Standing Therapy
Saturday & Sunday are Free days so we started the weekend off by sleeping in to 7:00 AM. As if we really need a sleep in! Since we have room service, laundry service and maid service everyday we are absolutely exhausted by the end of the day. Christine has suggested that we should consider some of these services when we get home. We have an unspoken competition on who can read the most novels. Since we have lots of time for lunch and supper we have decided to try to master the art of eating with chop sticks.
I had a bone marrow stem cell treatment by spinal yesterday at 10:30. It was all done by 11:00 so thanks to the valium that goes along with it I slept till 2:00 PM had lunch then slept again from 3:00 until 7:00 then stayed up and read until 11:30 PM before going back to sleep. Christine had a busy day reading sending a few emails and tending to me when I needed help so she was asleep by 8:30 PM.
My physio went really well this week. On Thursday and Friday I was able to do lots more repititions of the more strenuous exercises and even the balancing exercises seemed a bit easier and I was able to do them for a little longer time than before. It is also easier to stand straight and walk but I still have some work to do on balance. My leg muscles still tighten up when I first lay down and stretch out but that only lasts for a second or two and then I am able to make them relax. The ache that I get in my back when I sit for a while almost doesn’t exist and recovery time after sitting for a while is getting shorter all of the time. Also my legs have less of a tendancy to want to cross over now that the muscles aren’t as tight and that also helps to make walking easier. I’m learning not to trip over my feet all over again.
Today I have the usual spasms in the back of my thighs when I stand up straight which is the side effect of the spinal injection. Yesterday I hardly felt the spinal and since they gave me some solu-mederal just before the spinal the spasms in my thighs are pretty minor in comparison to the spasms after some of the other spinals. By tomorrow I expect they will be gone and I will be able to get in a good session of physio on Monday. If it doesn’t rain we will probably try and get out for a walk tomorrow.
Hope you all have a Enjoyable Warm Spring Weekend.
May 2nd, 2009
Silk Market Wushan Square
Tea Store – Making Green Tea Cookies
I had a routine day starting with physio therapy and standing therapy. I felt a little more tired today and just felt like I didn’t have as much energy as yesterday. I suspect that some of the extra energy yesterday may have been from the small dose of solu mederal that I was given just before the spinal infusion on Monday. The muscle spasms in my thighs from the spinal were almost completly gone this morning and after physio I never had any more spasms. I still had a real good session in physio and managed to do all of the more difficult exercises without too much more effort than yesterday. Just not as many repititions before I felt tired.
Just before lunch Dr Tony came to my room and gave me a thorough examination checking on the muscle tightness in my legs, the feeling on the surface and the deep feeling sensations in my legs. Afterward he told me that he thought the muscle tightness was less than it had been a few days ago. He also told me that the reason I was having trouble with my balance was that the deep feeling sensation in my legs was impaired but that it was about the same as when I got here. He went on to say that the rest of my MS symptoms had not gotten worse and may have improved a bit. He indicated that he thinks the increase in baclofen medication along with the stem cells is working to improve my condition. I agree with that as my legs and my lower back muscles all feel more relaxed. I also felt more steady and therefore more confident today when I was walking around the ward. My steps are actually begining to feel more normal and I find that I am beginning to take quick glances at other people and things around me when I am walking instead of focusing only on the next few feet in front of me.
Since I am feeling so spry Christine took advantage of the free time and went shopping today. She is planning to go to the Silk Market and then to the Night Market after that.
April 29th, 2009
Happy Birthday Kristy. Hope you have a Great Day.
The spinal injection of stem cells and my bone marrow stem cells went quite well yesterday. They gave me 40 mg of solu mederal to counteract the spasms that I always get after the spinal. It helped quite a bit as the spasms were fewer and smaller. I was surprised today at how much energy I felt that I had. In fact I probably had one of my better physio sessions. Every exercise just felt that much easier to do. This morning I was able to stand in the lunge position for almost twice as long as yesterday and I wasn’t nearly as tired. This afternoon 30 minutes on the exercise bike seemed like it was hardly any effort at all compared to the last few sessions on it. If it wasn’t for the few muscle spasms that I have in my thighs I feel like I could just go for a walk with very little effort. I am definitely looking forward to what the rest of the week will bring. I am still cautiously optomistic but a bit excited about the rest of the week as the changes I felt today seemed quite significant.
April 28th, 2009
Saturday was a busy day with all of the usual therapies. I am feeling very good and felt like I could do alot more in physio. Jame’s also introduced a new stretch that really helps to stretch out the muscles in my back. After doing this stretch I stand up very straight and find it easier to walk standing up straight.
The highlight of our weekend was to attend Sophie’s wedding. As you can see by the pictures the bride was very beautiful. The wedding was an informal but very nicely done. We had the opportunity to try a variety of intersting and tasty Chinese food. There must have been more than a dozen different dishes served at each table. We had fresh garden peas, duck soup with bamboo, lobster, crab, fish squid, along with beer, wine and coke to celebrate the occasion. We had a very enjoyable evening visiting with other patients and staff at the wedding.
Sunday was a quiet day around the hospital. Christinewent went for a run and then to the RT Mart for some groceries. I rode the exercise bike then did some other exerciese.
Monday morning I will be getting the stem cells from my bone marrow. This will be by spinal injection so will have to spend Monday in bed. The rest of the week will be spent doing the routine treatments with another spinal injection of bone marrow stem cells scheduled for Friday afternoon.
April 27th, 2009
We have had a fairly quite and routine week. The muscle spasms in the back of my thighs after the spinal on Monday were almost completely gone by Tuesday night. On Wednesday there was only the slightest twinge once in a while just as a reminder not to be too brave and start motoring around without some assistance. Actually James has had me do more walking with my walker so that I practice standing up straighter when I walk. He has also added some new stretches for my back to help stretch those muscles out more and get me standing up and walking straighter. Christine seems to be getting shorter this week. The doctors have also recomended that I increase the amount of baclofen I take each day as well. This is a muscle relaxant and their reasoning is that it will help to take away the tightness in my leg muscles. Since I am always working against that tightness they are telling me that this is using up alot of my energy and that is why I haven’t been able to walk as far lately. I was always trying to stay on a lower dose as it seemed like it made me feel really tired when I first started taking this medication. I am quite well rested here anyway as we get lots of sleep and spend lots of time just sitting around and reading novels. I haven’t felt any more tired since increasing the dosage of baclofen and the muscles in my legs have also become more relaxed. This may also be due to the stem cells working since I also got a large reduction in muscle spasms and tightness in my back and legs the last time I was here for treatment. This is the first time I have increased the dosage of baclofen since I started taking this medication over two years ago.
On Friday I had another treatment of stem cells by IV. That is quite an easy treatment compared to the treatments by lumbar puncture (spinal Injection). Today I had probably one of my best physio sessions since I have been here. James did about 45 minutes of stretching with me then using the walker he had me walk the loop around the ward. After that we did some balance exercises and squatts then another lap around the ward without the walker and James providing me with some balance and constant reminders to stand straight as I was walking. After standing therapy both James and Christine were shorter again.
One of the nurses on the ward (Sophie) is getting married today and has invited the patients and staff to come to here wedding. We are planning to go and are looking forward to that. We had a little rain here last night so the weather is cool +18 C and sunny.
We really appreciate receiving all of the well wishes, prayers and emails from everyone. We check them out every morning as we have breakfast. We are also on Skype so if anyone has signed up for that you are welcome to give us a call on that as well. We are usually up and about by 6:00 AM which is 4:00 PM in Saskatchewan. The computor is on and we are having breakfast usually between 6:30 and 7:00. We are in the room until 8:00 until we leave for physio.
April 25th, 2009
The bone marrow extract last Wednesday went quite well. I did not have any problems afterwards. The only problem I had was that for the next few days I was really really tired. It seemed that no matter how much I was sleeping and resting I was still tired. I guess it takes quite a bit of energy to regerate the bone marrow that they take out as it is quite a bit. On Friday I was a bit disapointed after physio since I didn’t seem to have near as much strength as I did when the week started. We looked on the blogs from last summer and found that I was also very tired for the first few days after the bone marrow extraction. Once I realized what was causing my lack of strenght I felt a bit better about it. Also Dr. Tony was concerned about the tightness in my leg muscles and suggested that I increase the amount of baclofen that I take since I was on quite a low dose. Saturday & Sunday were free days so having a couple of extra days to just rest was also helpful. On Sunday I was starting to feel better and did some light stretching and exercise on my own while Christine made a trip to the Silk Market. It was raining quite a bit so she didn’t stay for too long but her bartering skills were as sharp as ever and she had lots of fun.
On Monday I felt more like my old self. I had a good session at physio and then standing therapy. At 11:30 it was time for another stem cell treatment by spinal injection. In order to help decrease the muscle spasms after the treatment the Doctors gave me a low dose of methyl prednasone and some valium to help relax me as well. The valium is the good stuff as you just have the best sleep after the procedure is over. Monday evening I was wondering if the methyl prednasone had helped as I was having quite strong muscle spasms just lying in bed. The doctors said it was OK to take some of the Tylenol that I had brought with me and that seemed to help so I ended up getting a good nights sleep.
This morning I felt much better and with Christine’s help and my cane I was able to walk to physio. The extra baclofen is also helping as the muscles in my legs weren\t nearly as stiff as they were last week. To finish off physio we did one lap around the ward. About 1/2 way around I had one of those spasms that shoot from my back down into my thighs and that caused quite a comotion as it droped me to my knees with out warning. James had been holding onto me so even though there was no warning it was all in slow motion. It was good for a chuckle afterwards. When I fell there was just James, Christine and I but by the time I went to get up there was almost a crowd around with everyone getting a hand in to lift me up. When we finished the lap I got a short rest and then did standing therapy for 30 minutes. After that James put hot packs on my thighs and lower back which was very relaxing.
Even though I had a little spill this morning I am having much less trouble than I did last week after the first spinal injection of stem cells and I certainly feel better than I did all of last week. This afternoon there will be accupunture and then electro wave therapy followed by 20 to 30 minutes on the exercise bike.
I’m also happy to report that so far the accupuncture has been far less painful than it was last summer. I believe the reason for this is that my legs are more relaxed than they were when I first came here last summer.
April 21st, 2009
Yesterdays focus was on the bone marrow extraction. It seems there is alot of preparation for it and then when it occurs it is over before you know it. The extraction was scheduled for 9:00 AM but the OR ended up being really busy yesterday so we were told Wednesday night that it would be delayed until the later morning or most likely the early afternoon. That was OK with me as they said I could have breakfast if I ate it before 6:00 AM. We were up at 5:00 and finished on time. I went to physio but was still having lots of spasms in the back of my thighs so used the walker to get there as I wasn’t very steady on my feet. James tried to stretch out the muscles but before he could do that he had to give me a treatment of electro wave therapy to get rid of the spasms. After a bit of stretching he put hot packs on my thighs and lower back to finish off the session. Since my legs were so tight they cancelled standing therapy as the doctors also wanted me to save my strength for the bone marrow extraction.
At 11:00 I got into my party dress (hospital gown) and they set up the IV in my hand shortly after that. At 12:00 they were ready to go and they wheeled me down to the OR in my bed. The OR is on the 3rd floor. Once there I was transferred to a really narrow table and hooked up to all the monitors. As they were hooking me up to the monitors and cleaning my back I kept a close eye on the IV to make sure they didn’t for get to give me the anesthetic before they got down to the real work. I remember seeing her put the needle into the IV and then I just had the best sleep until one of the nurses said OK were done. Then it was back onto my bed and they wheeled me into the recovery room for a while. By 1:30 I was back in my room and had another really good sleep till about 4:00 PM. The rest of the day I was confined to my bed and only allowed to use the washroom if I got there by wheel chair. The whole procedure went quite smoothly and the only mark is a tiny hole on the top of my hip bone on my back that is about the size of large pencil point. There does not seem to be any residual pain. It just feels like a little bruise after you bump into a piece of furniture or something.
Physio and Standing Therapy were cancelled today and although I was allowed out of bed I was told not to exercise. I still had accupunture and electro wave therapy. The muscle spasms in my thighs are gone now so I had a very uneventful day. Since it was so hot they turned the AC on yesterday for most of the day and brought us another fan to help cool our room down. Seems they don’t fool around if there is even the smallest problem here they address it right away. This morning we noticed there were six new fans on the ward for distribution to help cool down some of the other rooms. The entire staff here really goes out of their way to ensure that we get the best care possible and are as comfortable as possible. They also ensure that when ever something is going on that there is an interpreter there to explain what is happening. When they took me to the OR one of the intrepreters (Lucy) went with me right to the waiting room by the OR and stayed there until I was taken into the OR.
Christine went to the RT Mart this afternoon for some groceries. There weren’t any taxis today when she wanted to come back so she walked home and then took the stairs to the 20th floor cause the elevators were very busy and quite slow. She has been walking the stairs at least 2 or 3 times a day as she says that since we seem to be ordering the same amount of food as when Kathy was here with us last summer she feels like she has been eating Kathy’s share of the food she has to do some exercise to work it off.
We ordered some chicken from KFC and made a salad with lots of fruit in it to go with the chicken. The pineapple and the mangos are in season and are very sweet and tasty.
April 16th, 2009
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