Joanne’s MS Blog

Good Morning and NEE HOW from Shenyang. Thsi morning at about 11 am Joanne had her bedsore operated on.  The procedure took about 1/2 an hour and everything went very good. Joanne did not experience any pain and it is now 8pm and she is still very comfortable without any type of pain medication. She is however getting antibiotics through IV although we are not sure what kind because no one here can translate the name. It was interesting how they proceeded with the antibiotics. First she was given a injection into her arm and the injection point circled and they watched the area to see if there was a reaction to the injection. The nurse left the room but first told me to call if Joanne felt ill or anything strange happens. Then 2 nurses returned and looked again at the injection site ,asked Joanne if she felt ok, she answered yes she feels fine,  and then they said they would return and give Joanne her IV. Everything is going good and we don’t think there will be any complications with the surgery. Joanne said the doctor was very nice and did a good job.

     Tomorrow we plan on going out and enjoying the day at least for a few hours and then another stemcell injection at 4pm. This will be the 5th injection into Joanne’s spine and 2 more to go after that. I wonder if she is beginning to feel like a pin cushion. She says YEAH!

   We hear the weather back home is getting more spring like with Monday even looking like the mid 20′s , that sounds great. I remember the night of the fundraiser ,which was a week before we left for China, the temperature was -30 something. Have we been gone that long Yikes!!! The temperature here is really good with next week in the mid 20′s. I will try and send some pictures tomorrow, so bye for now……

Hello again…..well a few things to talk about. The restraunt experience at noon . After Joanne had finished with her morning physio she was a little tired ,so I decided to go for a walk in a direction I haven’t ventured to .  After walking for a few miles I started to feel a little hungry and when I came upon what appeared to  be a nice looking restraunt with golden calves as part of their outdoor sign I thought I might be able to get myself a juicy steak. I was greeted at the door by a beautiful young lady in a long red chinese gown that escorted me to my seat , while noticing every eye was on me in the restraunt. Gives you a kind of strange feeling being so noticable. anyways I sit down and three waiters dressed in very nice black suits and ties come over and of course speak chinese, and I shrug draw a picture of a rectangle trying to represent a menu and they look at eachother smile and then one of them scurries off to get I hope an english speaking person. Well this gentleman arrives who yes does speak very little english and gets me a menu . I open the menu and to my surprise the pictures are of raw beef and vegetables …Hmmm! I ask him if I can order a steak ,he replies a steak can you spell. I say yes S T E A K ,he replies again don’t know what that is . I said all the food on the menu shows raw beef is this how it is served. He thinks about it for a moment and he says yes you cook . Oh I replied and where do I cook it ,he says at my table . All eyes in the restraunt are still on me as I am the noon hour entertainment. How do I cook it I ask, and he replies with this .  shows me what appears to be a fondue kinda of thing, and I say how cool ! Ok I will take that plate of sliced beef  ,this vegetable dish and another dish that resembles a kind of salad He lights my fondue thing and when I open the lid it has what appears to be a soup . It contained water some peppers a little bit of onion maybe shredded carrot (not sure). Then here comes the beef thinly sliced and on a oversized plate about 14 ” in diameter and a huge plate of vegetable that when sliced resemble honey comb cerial. I ask him how long I do iI boil my soup and he says to your liking (good answer) and so I throw in my veggies only a few,( the pot is not that big) and about six slices of beef . People are smiling at me now , maybe I am doing this ok ,maybe not , but I am hungry and by god I am going to eat something I just hope it is good. I start to attempt to remove what I have cooked with chopsticks and I notice one of the gentlemen standing over my table ran and grabbed me a fork. Well I throw the first little bit on my plate and and add some kind of a sauce provided and to  my amazement it’s really really good, Well I continue this cook out until I consumed it all , while they poured me green tea to wash it all down. A very good meal I might say, even if I was the one to cook it. Not what I expected ,but it turned out great. Total bill in canadian funds $8.25 and that was a pound of beef with vegetables.

     Well it looks like the maybe trip to Beijing is a no go as the interpreter  says it is not very wheelchair accessable and Joanne should remain here for treatments and not miss a day.

    I did not mention on past blogs that Joanne developed a bedsore when we were back home and we have been trying to heal it over the past couple months with not that much success. So Sunday Joanne will have small procedure done to remove the dead tissue and then close the wound. With advice from back home ( thank you Brenda )we decided that was the best way to proceed. The procedure should take approximately 20 minutes using a local anesthetic and should not interfer with with the rest of the stemcell treatments. I of course will use vodka for my numbing.

    So everyone have a lovely Saturday enjoy the great weather I sent you from China LOL!!! And we’ll keep you posted.

With Love from Shenyang,

Brian and Joanne

Hi everyone …..14 days to go and it’s homeward bound. That sounds so good ,as both Joanne and I miss home alot. There is only so much to see and do around the hospital and after a while you get a little bit more itchy for home everyday.

     Just a note about the other night with the stemcell injection . Everything went smoothly. Joanne remained comfortable even though she was in my bed and no headaches followed. She continues to look healthy but there are times of the day where she does get fatigued, although I feel tired myself and this could be some of the boredom setting in. Lastnight we talked about the possibility of taking a high speed train and going to Beijing and the Great Wall of China which appears on the map to be close by. I know it would be an overnight adventure but it definitely would be a break from the same old routine. I will inquire with the doctors and see what they think first, and also to see if it is possible because of wheelchair accessability.

     That’s it for now folks ……I will have a few pictures coming your way…..So until tomorrow Bye!

Hello from here not there……I am still being plagued by those internet blues. But I am hoping this one gets through. It is Wednesday 7pm and Joanne has just received another stemcell injection at 4:30pm this afternoon. This is a bit humourous ,but Carol Joanne’s caregiver is our gopher for information, although communicating is done in alot of sign language and computer translators. Anyways Joanne is scheduled to go at 4pm and Carol is checking furiously to see what the hold up is and then finally she comes rushing into the room and signaling for us to go. So we grab hold of Joanne’s bed and move at break neck speed to get to the elevators and the 8th floor where the injections take place. She is yelling as we go to clear the path and we move like mad banshees’ down the hall everyone is clearing a path. I am thinking to myself what the hec is the hurry , they were late , and I don’t know what is going on …..why the rush? And then we are there at the room where the injections take place, and in Joanne goes. Now Carol turns to me laughing and starts counting on her fingers and showing me the number 6 , and she is laughing. I still don’t know what the hec she is trying to tell me. Just then 5 more beds come wheeling in and lining up to get into the stemcell injection room. Now I know , she is happy and laughing because we beat everyone else to the room and Joanne received her treatment quickly. The treatments take about 20 minutes so if we were last, we would have waited about another 11/2hours before the injection and 6hours before I can move her. That would have meant a real long night. So I gave her a high 5 . Way to go Carol!

     The last couple of days have been pretty laid back with just the routine stuff happening. Joanne and I did get a chance to get out again and visit the market place behind the hospital . A very interesting place and I have sent pictures earlier so you could see for yourself. The weather here has been very warm and pleasant but I noticed that even on a sunny day the sun has trouble getting through the smog. Saskatchewan is so good for air quality in comparison ……we do have it good at home. If we take all the things we bitch about at home and then could come here and see how other people live …..take my word … we have it good, real good, and then we would appreciate what we have. I will say that the Chinese people are very family orientated and seem happy and content, and that does mean alot in life.

    People have been asking if Joanne experiences any headaches after the stemcell injections in the spine and I can say that so far , so good , no headaches or other side-effects.  I did read that if you drink alot of water that does help with headaches and I make sure Joanne drinks lots everyday …about 3 litres….They drain some spinal fluid out of your spinal column before injecting the stemcells , so it is important not to be dehydrated when you receive these injections.

      I have included this saying from an email I received and wanted to share it with everyone reading this blog. I just thought it was a great saying……

  TWO FRIENDS WERE WALKING
THROUGH THE DESERT  . 
DURING SOME POINT OF THE
JOURNEY, THEY HAD AN
ARGUMENT; AND ONE FRIEND
SLAPPED THE OTHER ONE
IN THE FACE   THE ONE WHO GOT SLAPPED
WAS HURT, BUT WITHOUT
SAYING ANYTHING,
WROTE IN THE SAND ,
TODAY MY BEST FRIEND
SLAPPED ME IN THE FACE . THEY KEPT ON WALKING,
UNTIL THEY FOUND AN OASIS,
WHERE THEY DECIDED
TO TAKE A BATH .
THE ONE WHO HAD BEEN
SLAPPED GOT STUCK IN THE
MIRE AND STARTED DROWNING,
BUT THE FRIEND SAVED HIM.

AFTER HE RECOVERED FROM
THE NEAR DROWNING,
HE WROTE ON A STONE:“TODAY MY BEST FRIEND
SAVED MY LIFE”

THE FRIEND WHO HAD SLAPPED
AND SAVED HIS BEST FRIEND
ASKED HIM, ”AFTER I HURT YOU,
YOU WROTE IN THE SAND AND NOW,
YOU WRITE ON A STONE, WHY?”

THE FRIEND REPLIED
“WHEN SOMEONE HURTS US
WE SHOULD WRITE IT DOWN
IN SAND, WHERE WINDS OF
FORGIVENESS CAN ERASE IT AWAY. 
BUT, WHEN SOMEONE DOES
SOMETHING GOOD FOR US,
WE M UST ENGRAVE IT IN STONE
WHERE NO WIND
CAN EVER ERASE IT”LEARN TO WRITE
YOUR HURTS IN
THE SAND AND TO
CARVE YOUR
BENEFITS IN STONE.

Nee How from Shenyang…….well as the title says Sunday was kinda layed back and boring so Joanne and I decided to send a few Chinese proverbs from non other than Confucious  so here it goes

1. He who makes love on grass, get piece on earth.

2.War does not determine who is right, but who is left.

3.Man who farts in church sit in own pew.

4.He who thinks only of number one, must remember this number is next to nothing.

5.He who stands on toilet high on pot.

6.Man who walk through airport turnstile sideways going to Bangkok.

7.Foolish man give wife grand piano, wise man give wife upright organ.

8.Man who run behind car get exhausted.

9.Man who go to bed with itchy bum, wake up with stinky fingers.

10.Passionate kiss like spiderweb, soon lead to undoing of fly.

11.When called an idiot sometimes is better to be quiet then to speak and remove all doubt.

Gotta love the wisdom of the Chinese!

    Just thought we could make your day today with a little humour from China!!!!

Love Brian and Joanne

Hello and so another day gone. This weekend was a holiday for the chinese people , and so therapies etc. were cancelled with the exception of PT Sunday afternoon.  Everyone I asked did not know the name of the holiday , but it is celebrated by people visiting grave sites and leaving food and/or wine at the graves.

     Saturday afternoon was a little windy but nice and warm with sunshine . Carol, Joanne and myself took a long walk to middle street an area of town I had been to before but wanted to take a closer look.  Unfortunately the shops are not very wheelchair friendly, and Joanne didn’t care to go shopping so we toured from mall area(similiar to scarth street mall in Regina)and walked by the shops.  It was Saturday afternoon and the cobblestone court was jam-packed with people. It reminds me of the fairgrounds at peak times. Not exactly the best for pushing a wheelchair through but we managed without any problems. This area of town is very modern with clothing shops , eyeglass shops ,footwear shops,restraunts, small fast food outlets in the middle of the court. Very colorful . After touring this part of middle street we entered into an open market that resembled an endless hallway of meat and fish shops, were one could by many cuts of meat and an unbelievable assortment of seafood many of which were alive in tanks. These individual little shops were about 12 feet long and 8 feet deep all butted against eachother and about 300 yards from the beginning to the end of the market. After skipping over a few streets we ventured into anther open market where fresh fruit and vegetables , shoes , clothing , trinkets ,odds and ends and one of my favorite things beer. Now I have to stop and comment about the beer! In walmart I purchased beer , that is tsing toa beer , the 335ml. size for $1.25 CND and in this market I could buy the beer for 50 cents a bottle the 500ml. size…….and so I did. I was done my shopping. We also picked up some cherry tomatoes red and yellow ,they were delicious, Joanne loves those. We also bought some watermelon , it to was equally good. I forgot to mention that I purchased a roasted chicken for supper. It was basted in some kind of a sauce that was a little sweet but very tasty. That night for supper in our hospital room we had a feast, …..and the beer was good too! I remember putting in a movie to watch but fell asleep by 7pm …..Joanne woke me at about 9pm so I could get her ready for bed. I can’t believe how all that beer ..I mean walking can tire a fellow out.

     Joanne still has better feeling in her limbs , but no movement at this time. They are placing small weights in her hands near the end of her physiotherapy while they support her from behind as she sits on a exercise mat. This is probably done so she can experience the weight as it pulls on her biceps. Her over all appearance is better and she does seem more alert, although when she starts getting tired she does look exhausted . The improvements are minimal but she is going in the right direction,and we can only hope for more as the days pass. At the beginning the doctor’s here said it would take 3-6 months before we see any improvement but there is a chance we could see some sooner. Joanne has had no movement below her neck for over 2 years now , so I would think it will be a while before we do see any significant changes.  Those muscles must be stretched out again and with the physio and acupunture they are loosening up. Her arms and fingers are not as stiff and her legs are bending very easily now.

So bye for now and Joanne says thank you all for the words of encouragement and positive energy that is being sent her way.

Nee How (hello in chinese) i am a little late in sending this post because thursday was a change in plans. Joanne was to receive another stemcell injection on Friday ,however after walking about 3 miles away from the hospital and enjoying the sunny weather Joanne’s caregiver Carol gets a call from the hospital and we had to hurry back as they decided to do the injection ASAP. There is a lack of communication! So Joanne get’s her injection this time not on her air mattress (it is awkward for the doctor) this time on my bed. This was done at about 5:30pm, and then Joanne must lay flat on her back for 6 hours afterward and 4 of those first hours without a pillow. I can only describe the 6 hours as complete hell. Joanne was so uncomfortable I was moving her arms and legs ,massaging her neck etc. , I could not move from her bedside, she was not comfortable at all. We both didn’t get to sleep until after midnight when I switched her back into her own bed. The VODKA was good before bed. A short sleep up ,at 6am and back on schedule with bathing breakfast and physio. Then we both took a nap at around dinner time , that brought back a little energy. The afternoon was spent in the park across the street. The weather was absolutely gorgeous , it was warm in the high teens I am sure , and no wind. I took a lot of pictures yesterday mostly of the people and I will email them to the people that have left comments on Joanne’s blog. The reason I am not including them in the blog is because I found out there is a limit of 10megabites per blog. I maybe able to increase this I will investigate. Bye for now ……..we both sure miss home ……today is the halfway point of our stay in China.

Bicycle bed   Sitting area at hospital   Joanne with guard   Playing cards in the park   Walk in the parkHello it is Thursday morning in Shenyang , the sun is shining and things are looking up. Joanne was telling me lastnight how inspired she was by 2 young chinese men who were taking physio with her yesterday afternoon.  She had noticed how hard and unrelenting they were working to improve their physical handicap. She says that watching them grunt and groan and keep on going was a motivation to do the same. I am sure she will because she is a fighter. I asked her if my kicking her in the butt wasn’t motivation enough(LOL!!!)

     Joanne did not use an sleeping medication lastnight and she slept soundly. We both watched a movie and stayed up until 11pm . I slept good myself after a couple of voldka’s and this morning started off great. Joanne is presently in physio as I am starting this blog entry without her.

     This afternoon we plan on going to wal-mart which is about a 20 minute walk. The 3 of us will get some fresh air and enjoy the sunshine.Maybe we will take a different route and I will take my camera and send some more pictures. I will include some pictures that I have already taken. Bye for now and thanks to everyone for all the great comments and emails. Oh one more thing , the internet problem is still happening with this computer but I was able to connect my ipod to the internet and get all my emails and send emails and write into this blog if necessary. Thank you Steve Jobs for Apple Inc.

Outside Hospital Room Window   Shenyang Hospital 463   hospital group at ocean world   Wheeled transportation   Concrete Teapot   3 wheeled taxi    china-48.jpgHello from Shenyang a hustling and bustling city in northeast China. Joanne would like to say  that she is experiencing a slight improvement with feeling in her arms and legs. We will try to cut back on some of her medication to help her sleep at night time. This we hope will make her energy level increase because she feels that taking some of these meds keeps her a little drowsy into the day. We are trying this on our own as an experiment and we will see if this helps. We both hope that doing this will not make her sleep worse.  We have included some pictures as I have finally ( I hope ) figured this out. Bye for now …………..zzz….zzz.zzzz.zzzz

Hello again everyone…….Joanne laughs as she says” Brian has a sore mouth”. Oh yes I replied and it is very aggrevating can’t you tell……. We are just competing to see who is going to go through more pain the mrs. or me.

     Actually this little story goes back to last week when I bit into a piece of pork and there happened to be a small bone inside, I heard a crunch ,hoping it was the bone, and a sharp pain followed. After a short period of time it went away but would return when I would drink something cold or hot the pain would return. This I could tolerate thinking it would get better over time, but when I woke this morning and had my morning coffee it would not go away. I called Lucy our interpreter and off to the dentist I went to find out I needed a root canal , Oh Joy! I thought I was good before I left as I was at the dentist before coming to China. The dentist’s area reminds me of the old dental health clinics where you can view all the patients and the dentist’s working on them. The x-ray was done in a small booth about 3 feet square and lead lined. Beside the dentists chair was the old style sink where you rinse and spit …..I was a little nervous. However everything worked out good and the procedure cost only $30 canadian dollars, not bad , and the anti-biotics cost about $2.50 .

     Moving into this afternoon (I write this blog as I go and save it so I don’t lose everything I type because it has happened before more than once , so I am learning), Joanne received her first umbilical stemcells and said she felt the needle this time around.  Now the worst part for her , lying on her back for 6 hours this helps to reduce the side effects , headaches, mostly. We are both praying that these little stemcells will do their job and start repairing the damage done by the MS. Only time will tell for sure ………. 5 more stemcell injections to go and 25 days left. We are hanging in there til the end. Bye for now and have a great monday!!!