Posts filed under 'ataxia'
Already it is May and time to write again about my progress or lack there of. I’ve had a few falls of late and badly scraped and bruised both knees so I haven’t been able to do my floor exercises with the weighted stick for a while. Yesterday I saw my occupatiional therapist and we ran through all the fine motor skill tests again. I had made an improvement in all but one test which involved putting the tiniest, slipperest pegs into a peg board. This was great to know as I then keep motivated to do the boring repetitive hand exercises. The exercises have also been designed to increase my wrist and finger dexterity but the damage from the arthritis is making progress hard.
I have just been out in the yard trying to train a very enthuisiastic, naughty, 11 week old puppy to walk sensibly on the lead and not jump all over me when she sees me. I don’t know how far I got with the actual training but I did manage to stay upright the whole walk. At times with the pup and the lead wrapped around my legs this was quite a feat.
It is quite difficult to keep my exercises up when the improvements aren’t obvious but I will keep persisting as a better quality of life is what all stem cell patients strive for. I am in a better position now than I was before I went to China but I can’t measure this.
May 2nd, 2007
In two days I will be 38 years old and I certainly feel all of those years. I haven’t really improved much this past month. In fact I’ve had quite a few stumbles and falls. I tried to ride my push bike after it has been gathering dust and cobwebs for 10 years, but this wasn’t very successful, in fact it was madness and I have the bruises to show it.
The arthritis in my feet and ankles have added to my falls. I am seeing the Rhematologist on Wednesday (my Birthday actually- what a nice way to spend it) hopefully we can do something to remedy the situation. I feel really frustrated at the moment that I’m not progressing more. I started going to a personal trainer today to work on my balance using pilates – hopefully this will be a positive albeit an expensive move. I will still keep up my other exercises as well, especially the ones that I was doing in China.
I’m sure with a two week break from school coming up I can get some much needed rest as my running aroung with the boys will have reduced. We are about to celebrate Easter in Australia which is an important time in the Christian Calender.
SO HAPPY EASTER!
April 2nd, 2007
Well I did say I would try and post an entry every month but time gets away when you are the taxi service to two very active school boys, who might I add have a more interesting and exciting social life than I do. I am trying to do my exercises every day. This involves about an hour of floor exercises to try to increase my balance. I have been trying to follow the same sort of regime Dr Wang had me complete in China. I now have a weighted stick which I lift whilst kneeling then do the same on one knee, these exercises are getting a little easier in that I don’t appear to wobble so much until I get really tired. I also do squats and touch my toes where I don’t seem to be falling forward so much. I’ve added a fit ball to my routine and I lift this when I’m home alone. I also can sit on the fit ball then stand, then sit then stand, etc without too much trouble as long as I do not try to go too quickly. My throwing and catching is going along OK unless I try to use my left hand as the dominant hand and arm then my throws and catches are awful. I am currently trying to bounce the ball with both left and right hands. This is still a work in progress.
Ever since I came home I have tried to repeat the speed that I was walking in China on the treadmill. The treadmill in China was not obviously in kilometres or miles per hour because I would have to be near running on my treadmill to repeat my performances in China. The fastest I can go on my treadmill is 4kms per hour and this is hanging on, without hanging on I can only get up to 2 kms but I do still stumble and have to catch the handrails. I also try to do at least 10 min on my exercise bike at the fastest speed I can go to keep my heart fit. I finish up with some stretching and walking in the pool but I’m not sure how much longer I will be able to do this as it is getting cooler. All up on a really good day, if I complete my whole regime I’ve set down for myself my exercises should take two hours, approximately.
I have found a good accupunturist and have a weekly appointment. I love it, the lady studied in China and adds the electricity to my feet. I am still feeling the arthritis in my feet really badly.
One of my friends has commented that I now walk at a faster pace and when I went shopping with the same friend, (I didn’t even notice until my friend commented) the only time I held her arm was walking up stairs. I have only fallen once since I’ve been home and that was attempting to walk up our back stairs without hanging on. I have noticed I am not as self conscious out in public anymore but I think this has to do more with my changed attitude to this condition. There is no reason to be embarrased by a disability you have no control over.
I will have more improvements to share in a few weeks.
March 10th, 2007
I’ve been home a week now, I’m trying to keep up the exercises I was doing in China. This is not so easy now that your time is taken up with so many extra responsibilities. It took about 4 days for me to slowly get into some exercises and I really sucked. It pays to do them every day. I could hardly lift my legs when the opposite hand was in the air. My walking on the treadmill with no hands has deteriorated as well. I obviously wasn’t strong enough before I stopped exercising for a few days. A few exercises I haven’t been able to continue as I haven’t got parallel bars set up or a rocking board. My boys are having a great time throwing the ball to me but I’m always that bit more timid than I was in China as I always knew Garry was behind me to catch me if I started to fall. I don’t think I push myself as hard as I did in China, Wang was good at gauging whether I could do more or not.
On a better note, I’ve been home a week and haven’t fallen once, I organised and cooked for 11 adults and 11 children on Friday night (a surprise birthday party for Garry), took both my boys to swimming training on Saturday morning (by myself) as Garry was too hung over, walked down the Church this morning to recieve Holy Communion albeit a fair bit wobbly and I didn’t get sick or a cold as some people have after returning from stem cell treatment in China.
If there is anyone out there who would like some information on my treatment my email address is garrylane@bigpond.com. You will have to put something in the subject area to make me read it, as usually I will delete any emails where I don’t recognise the name.
I’ve read blogs of those who are still in China and Chuck a spinal cord injury patient can now move his toes. Keep up the hard work guys!
February 4th, 2007
I’ve just finished my last IV stem cell potion. I tried to con another bag of stem cells out of Debbie (one of the nurses) but didn’t get anywhere. We are going out for dinner with Jon and some other patients. We think they are all very sad about us going but they say it is a good riddance Aussie party, I know they couldn’t possibly mean that.
This will be my last blog entry from China. I will update when I get back to Australia and get my exercise regime organised. I was asked to estimate in percentage terms my overall improvements. This is really hard to do objectively and put a numerical value to. My walking is steadier, speech not as slurred, more confident going up stairs, writing still slow but more legible, coordination has improved somewhat and most importantly spending a month over here with people from all over the world with all sorts of injuries and diseases my attitude to life with difficulties has improved. Garry always says to me ‘There is always someone worse off than you’ and he is so right. I’ve also realised that having a problem such as ataxia is nothing to be ashamed about, no matter how I look when I walk or fall.
The staff at Nan Shan hospital have been outstanding. My therapist Dr Wang is great. He has made (or tried to) my therapy sessions fun and he and Garry have got along very well. Most importantly he knows his stuff and doesn’t leave me unattended or waiting for him. My Doctors have been cheerful, friendly, very professional without being the least bit arrogant. The nurses on the 14th floor are very friendly and professional. Joe one of the Beike staff members who does the patient videoing has gone out of his way to help us in other ways from the smallest ipod problem to fixing all of our computer problems. Last but definately not least are Jon’s girls. Sunny is a fantastic manager and between her and the other girls every wish and whim of ours has been met. Sunny, Jillian and Andria gave up a lunch hour and showed us where to go for a massage, we have been taken to dinner, the hairdresser, Windows of the World just to name a few. If anyone asked me if I was Dissatisfied with anything I would have to say nothing that these people could control.
I am very glad I came and I’m determined to ensure more improvements are yet to come.
January 26th, 2007
Today one of my nieces who also happens to be my Goddaughter turned two! So Happy Birthday Princess. I had my worst homesick day yet today. Dr Yung (head of the program, who has performed two of my spinal injections) suggested that my improvements have been so great I would benefit from another month of treatment. I burst out crying and said no way I have to go home to my boys. He didn’t quite understand the significance of my 5 year old starting kindergarten and my need to be there. Of course, Garry says ‘and who is going to pay for another month’ with all the hand gestures. Anyone who knows Garry would be able to imagine the exagggerated hand movements. Someone later in the morning asked if I had a cold and Garry replied so compassionately ‘no, she is having a sulk day’.
After a strenous physical therapy session in which I walked 1km in under 10 minutes, (hands free) Garry and George went for a cut throat shave at the barbers. The chinese barber started to shave George dry. The guys soon protested. By the end of Garry’s his knuckles were white and said he would never do that again.
The voice machine works by giving your throat muscles small electric shocks to wake them up, I guess. Anyway, the machine can be turned up or down depending on the level of stimulation that your throat can handle. George and I have been having competitions to see who could get it to the highest level. He actually maxed the machine out a few days ago but I did today too. I’m not sure if it’s the machine or the stem cells or a combination of both but people have commented on that my speech is now not as slow and the slurring is a little better. Maybe now people won’t think I’m drunk in the middle of the day.
Tomorrow is my last stem cell treatment. It will be through an IV hopefully I will be ‘pumped up’ and have heaps and heaps of energy for the trip home.
January 25th, 2007
Tomorrow will be my last full day of therapy as Friday afternoon I have my last stem cell IV and Saturday we are heading home. At this stage Saturday cannot come fast enough. We have made some really great friends here which I know we will stay in contact with, they have made our time in China almost fun.
I have not reached the point where I wanted to be by now but there have been improvements, which have made me pretty happy. I am now more independent when walking and I’m definately steadier on my feet. I did picture myself carrying my own luggage out of the hospital and running across the tarmac at home to meet my boys. This is not going to happen and I’m getting vibes that perhaps I’m a little impatient and maybe these goals were unrealistic. I will keep working towards these kinds of goals at home.
If my determination, the Therapists support, the special chinese potions, the nurses care and Sunny’s crews support was enough I would make the next Australian Olympic Team. These people mentioned above have also laughed politely at Garry’s jokes, making him feel better too.
Anyway another full day of therapy tomorrow and I will give it everything I have.
January 24th, 2007
Well 4 sleeps left in China and 5 until I see my boys. I can’t wait! Happy Birthday Patrick Lane! It seems as though we are missing everyones birthday this year.
I don’t have a headache today like I did after last weeks stem cell lumbar puncture. I do however have a sore back which is understandable after what I saw yesterday. Even though I was meant to go in first George somehow wrangled his way in there, but, then shortly afterwards they wheeled me in. So I watched the whole procedure done on George before they put me to sleep. It was totally amazing and I can totally understand why your spine hurts for a few days afterwards.
Anyway I made sure I laid flat on my back for six hours without moving, I had a wet washer with ice on my forehead the whole time I laid down. I only moved to go to go to the toilet, I ate 2 bananas, drank heaps of water and laid down again, trying to stay still all night. Anyway it worked, no headache. At lunch time George, Garry and I went for a massage this too helped.
I had a test today to see if there had been any improvements. All the exercises I had improved a little except for standing on one leg and walking in a very straight line heel to toe. This my therapist and I will continue to work on.
Jon has made it back to Shenzhen so a few of us are heading out for dinner. Should be great, Jon knows where to go and what to order.
January 23rd, 2007
Today is my eldest nieces’ birthday. Seven years old, I wish I was there with you. I hope you are having a wonderful day with my Jack and Harry.
Stem cell day today, my last spinal injection. There are 4 patients having stem cells today. George & I decided we would go first. Then we had to play scissors, paper, rock to see who would go first out of us two and warm up the doctor. I won, (I think) I go first anyway. Between George and I, we will have this hospital running ship, shape before we leave. George and Melissa do not go back to Canada until the 2/2/07. They have threatened to steal our passports so we don’t leave until they do but there isn’t anything that would keep us from catching the plane on Saturday. 5 sleeps left in China.
Therapy today was a bit of a disaster. The muscles in the calves of my legs are really tired and sore and my feet are still aching from all the walking. I think you have to find a happy medium between not doing to much on the days where you don’t have any therapy and making sure you don’t go stir crazy in the hospital with nothing to do. We had a fantastic day yesterday, I laughed all day at George and Garry, Sunny and Jilly’s organisation for a bus load of patients who don’t speak chinese was outstanding but I’m paying for it today with ‘muscle sore’ as my therapist says.
The pictures below show some of the important balancing exercises I have been doing and The Beautiful King and Queen of China.
Garry looks very comfortable with his arms around another woman.
January 22nd, 2007
well folks we have been around the world today. a group of patients and a few staff hired a bus (not very wheelchair friendly ) and went on a day trip to china’s “wonders of the world theme park”. it was a good outing and a fair hike around the whole park, we viewed things such as the grand canyon, sydney opera house, niagara falls, leaning tower of pizza(you know what i mean) pyramids, amazon etc . we finished the day with dinner at a chinese restuarant for the group which was very good.
rachel walked the whole way today and now is very tired (as the rest of us are), she had one fall into a garden today, the first one in a while whilst trying to take a photo of me with rhino. she will post some photos tomorrow when we recharge the camera battery.
the girls got george and i to dress up in traditional chinese costumes at one site at the park (i was wearing the male and george the female). we had our photo taken and then were swamped by people of all nationalities wanting to have their photo taken with these strange blokes. it took us for ever to finish the photo shoot and to top it off had to pay for the hire of the costumes (watch for the photos tomorrow).
rach lines up for last spinal stem cell tomorrow so hope goes better than last week.
January 21st, 2007
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