Wednesday, December 17, 2008


It is now just over a month since I’ve been home and I’m still not too sure what to think. As I wrote in my last blog I've been experiencing more difficulty and haven't really seen any new improvements. Since my MS is secondary progressive it is very uncommon to experience an attack. An attack or exacerbation is defined as any new or worsening symptoms that remain longer than 24 to 48 hrs. I definitely know what an attack is, although I've been attack free the last 2 1/2 years I have had many throughout the last 13 years. What I've been experiencing recently could easily be construed as a new exacerbation but I cannot chalk it up to that. Along with increased difficulties I've been having with my walking and mobility, the last two weeks have brought new symptoms into the picture. They're not new because I haven't experienced them before but because I haven't felt the symptoms in a very long time. What I'm talking about are sensory sensations in my legs, my left in particular where a feeling of cold develops and an uncomfortable increased sensitivity to touch. It feels similar to tingling from my thigh right through my foot but with great intensity as though I'm being pricked anywhere I touch. These new symptoms have definitely lasted longer than 48 hours however they are not constant and seem to come and go usually appearing in the evening when I'm tired or fatigued. Many of my MS issues that are hidden most of the time will often appear when I'm feeling a sense of weariness and this is why I can't classify my recent problems as an attack.
After having explained these new concerns there is good news to express as well. The vibrations that I feel in my hips and legs that have plagued me for the longest time have been rarely noticeable. My bladder control seems to have improved so I can hold my urine much longer and I typically only have to get up once in the night. Athletic therapy is going well and my therapist does see improvement week to week. I still have a difficult time motivating myself to perform my exercises on a daily basis but I am seeing progress. I see my therapist once a week and she typically gives me six or seven exercises to do every day until I see her the following week when she will assess my development and come up with a new routine. The goal is to isolate certain muscles and movements to perform properly so that when I do start working out I won't have different muscle groups fighting against each other like they do now with simple tasks like walking up stairs. It is a slow process but one that will be very valuable in the end. Unfortunately my insurance company doesn't see the value and does not cover athletic therapy which is ridiculous and something I now have to fight them on.
My acupuncture therapy also seems to be going very well, I still go twice per week and Dr. Tse is very optimistic that he'll be able to help me. At the end of each acupuncture session he has me lie on my stomach to perform what he calls suction cup treatment. In this process he rubs olive oil along my entire spine and uses a lighter to extract the air from a small glass jar creating a suction affect which he then slides up and down my spine. The entire procedure only lasts about 30 seconds but he is adamant that it is very important. He would like to see this method applied to my spine every day but this is easier said than done since it requires the help of another person. As I don't have a girlfriend to help, this only leaves my roommate Rob and I don't think either one of us are very comfortable with situations like this. Not that it's that big a deal but it's kind of like getting a back rub from another guy which is a little awkward and definitely less enjoyable. The bigger problem is that Dr. Tse has to train the other person how to do it properly meaning we would have to meet in his office located in Calgary and this is not possible. I suggested we could videotape it but he didn't think that would work so I'll just go without that procedure on a daily basis which he agrees is okay. The reason why he is optimistic about helping me is because he performed a test where he inserts a needle into the back of my calf until I can feel it hit a nerve. The fact that I can feel this nerve is a very good sign as most people with MS that he has treated are not able to. Dr.Tse has also taken a keen interest in stem cell transplants and will be phoning Dr. Jack in China to learn more and discuss my case.
It is still much too early to determine whether the stem cell treatments have been successful and you know what they say, “Patience is a virtue”. While I can't explain why I haven't been feeling great or why new symptoms have been creeping in I remain optimistic and committed to all of my rehabilitation efforts. I know one thing, the subzero temperatures that we've been experiencing don't help matters! On a cheerier note, at least we'll have a white Christmas this year which is always nice for my siblings returning home from California. I'm looking forward to a very nice Christmas; I'll have my whole family together this year. This is also my year to have my children for Christmas and I will have them for at least 10 days over the holidays. Christmas morning just isn't the same without children so I’ve even invited my ex to join my family for the kids Santa Claus surprise and gift opening. Hopefully this won't be too awkward, I have forgiven and made amends long-ago for my children's sake but I'm not too sure how the situation will play out for my brother and sister. In the spirit of the season and in particular this wonderful day celebrating the birth of Jesus Christ, I'm sure everything will be peaceful and friendly.

Monday, December 1, 2008


It is now just over two weeks since I've returned home and I figure it's time for an update. Unfortunately I don't have any great improvements to speak of; on the contrary the last week has been more difficult for me. I had seen improvements in my level of spasticity but those seem to have diminished recently. I have found my legs feeling more tired and I'm experiencing more difficulty moving around. I'm not sure what this means if anything but it's not the direction I wanted to be moving. I guess I still have to adhere to the one day at a time mantra. The good news is that I have found therapists to work with so I have continued my rehabilitation routine.
I've previously written about the different mindset behind the physical therapy that I experienced in China compared with the therapy that I’ve received at home. In the hospital the treatment goal was to improve my walking and balance abilities with the belief that they could return to normal. I thought it would be very difficult to find this type of attitude and treatment at home but I found it. My therapist is known as an athletic therapist and rehabilitation specialist. Athletic therapy analyzes the essential elements of each movement and identifies problems that need correction. Improper movements and imbalance lead to muscle compensations in other areas of the body which eventually result in poorer performance and increased difficulty with many movements such as walking and climbing stairs. I was especially encouraged by my new therapist when she told me about another client of hers who’d been to China for stem cell transplants. This client was a quadriplegic who had regained the use of his upper body which is a huge motivator and reinforces the idea that improvements are possible and realistic.
When Andy, my therapist in China, would correct my body from cheating while walking or going up stairs the action would virtually become impossible. My body has forgotten how to properly perform certain movements after years of naturally compensating for certain difficulties like rotating my hips and pelvis or straightening my leg for stability. Andy could always see where my difficulties originated from but he couldn't explain it to me. My new therapist can also identify these difficulties however she can explain to me in simple terms what my body is doing wrong, why it's doing it wrong and what needs to be done to correct it. During my first assessment the therapist viewed me walking, sitting, standing, lifting a leg and all kinds of basic movements and postures. The reasoning behind why I do or can't do certain movements is very logical and the corrections needed sound rather simple. I was aware that I had to strengthen certain muscle groups like my hamstrings and glutes but completely unaware of the other muscles that require strengthening. The main muscles required to perform certain tasks referred to as your mobilizer muscles are obvious but your stabilizing muscles are just as important. Apparently many of my stabilizer muscles have gone to sleep leading to the awkward way that I compensate for them in many movements.
Waking up and retraining these muscles does not require going to the gym, it is much simpler than that. For example some of the exercises I must do are squeezing my left or right butt cheek and holding for three seconds, a tummy squeeze for 30 seconds as if I’m holding back urine or squeezing a ball between my knees. I would find it easier if I could go to the gym to work out rather than completing these exercises. Even though these exercises might sound very undemanding, I have problems with them. For example I find it difficult to isolate and flex my right bum cheek and tasks as straightforward as standing straight while shifting my body weight from one foot to the other and lifting the opposite foot are very challenging. In order to do this last exercise properly I have to lift one leg by bending my knee keeping my weight on my heels with my core tight and hips level without any rotating or tilting of my hip bones. A very large part of these exercises is learning self awareness and any deviation from proper form is so subtle that it’s very hard to recognize.
I’ve now had two sessions with this therapist whom I’m supposed to see once a week and work on the exercises myself the rest of the week. Self motivation is not easy with this training, like I said I have a hard time with some of it and it’s difficult to see the results! It is much easier for me to go to the gym or to my basement and workout. I must keep at it though and stay committed because I do believe the benefits will come!
I have now started up with acupuncture as well. I had my third treatment today and will be on a schedule of twice a week for the first four weeks and then moving to once a week. My acupuncturist is from China and was trained there but he does speak English pretty well. As I suspected this treatment was much tamer than what I had in China. The needles are much smaller and the procedure is much gentler than my previous experience. Dr. Tse also uses electrical stimulation by attaching electrodes to the needles which is not new but wasn’t done by my acupuncturist in China. The process is much more relaxing here where the needles remain in me for 40 to 60 minutes and I find myself very relaxed and even dozing off occasionally. Dr. Tse can also explain to me what he’s trying to achieve by placing needles in different areas of my body. Some of the goals are to increase my energy and stimulate the nerve endings in my feet and establish a connection between my brain and different areas of my legs and feet. It makes sense for now but I don’t know how I’ll judge if I’m receiving any benefits from this.
For now I’m following recommendations of the hospital which are to continue with physical therapy and acupuncture and do not smoke or drink alcohol. These recommendations require a lot of commitment on my part and significant changes to my lifestyle and daily routine. Well I’ve been through a lot to go to China for this treatment so I figure working hard for improvements for the next five months is something I have to do in order to achieve the best possible outcome for myself. I know it won’t be easy but I have to stay positive and keep the hope alive.