Joanne’s MS Blog

Hi again from Shenyang the biggest little Chinatown I have ever been to. 2 More sleeps and we are on our way back home. It sounds so nice HOME. It has truly been an experience of a lifetime for us , one that we will never forget.   I want to say thank you to the doctors and nurses, the translaters and our caregiver. All of them treated us with kindness and respect.

     Joanne had her final stemcell injection this afternoon and is doing fine. 1 more hour to go and I can move Joanne to her own bed. Only time will tell if these stemcells have made a big improvement on Joanne’s condition. I will try to keep this blog going as long as I can and inform everyone with updates. I plan on making at least 1 entry a week or more once we are back home.

    Thank you all for your support, comments, and emails they definitely kept us going and in a lot of ways it was like having someone from home with us at all times. See you all soon ……….from Joanne and me …..we love you all … thank you!!!!!

Hi everyone…..I hurt and I am tired…..no I am just getting old. My back hurts , my legs hurt and my eyes are sore…those of you over 40 something I am sure you know what I mean. The mind is willing but the body says …NOPE!  Perhaps I stayed up a little too late lastnight and woke up a little early. Or maybe the 5 hour walk on top of that added to it. But Am I ever beat. Yep , I’m old. Let me get off that subject. Anyways today I was happy to take Joanne to the Imperial Palace with the help of Jenny , Jason and Carol. I was there once before with Jamie and it is really worth seeing again, especially if history is an interest. The only problem with  going through the grounds is it isn’t wheelchair accessible. This means every building ,and there are a lot of them, has stairs, and that requires lifting a wheelchair. Did I mention I am old! It was however worth seeing twice for myself because when you are my age you tend to forget fast!LOL! I hope Joanne,Jason and Jenny enjoyed the history and architecture of the Palace and grounds. I will email out some pictures to everyone… a couple are kinda funny.

    Just a note …our friends from the Boston area left for home this morning and that makes Joanne the last North American patient here. There will be no more foreigners coming to this hospital…from now on (as far as I have heard) all foreigners will be going to Bejing or South China.

    Just 4 more days to go and we will be leaving for home. Joanne and I are really, really looking forward to it. It will be so nice. Mom I am really looking forward to a home cooked meal Canadian style , when we get there . Maria told me you were making something for us . Yes! All we have to do is get through that long flight home. Did I mention I was old!!! Bye for now ..and I forgot to say 1 more stemcell transplant on Wednesday for Joanne. Goodnight or goodmorning where ever you are…..

Hello everyone…..it was so good to see our son Jason and his girlfriend Jenny it was like being home again. When they came to our hospital door I through my arms around them and hugged them so tight. I sure missed them . Joanne had the biggest smile on her face that I haven’t seen in a long time. Today is Sunday a day where there is no therapies etc. so we took the kids on a hike from here to middle street and watched the expressions on there faces as they experienced a little culture shock. The whole time I was wondering if I looked the same way at first. We stopped at some shops a long the way as Jenny did a little shopping . The weather was again fabulous in the upper 20′s with a light breeze. It actually felt a little too warm half way through our day. The excursion took about 5 hours. Joanne and I rested later that afternoon as the kids went back to the airport to pick up their luggage that didn’t arrive with them. Go figure! Later that evening we went out for supper at the restaurant I had been to before where I cooked the beef at my table. The kids really enjoyed it as we feasted on beef and lamb etc. The beer was good too!!! The night ended with us back in our hospital room. Everyone was very tired and understandably so. Tomorrow after therapies all of us will venture to the Imperial Palace and see some Chinese history. This is  a short entry tonight as I am a little exhausted myself . So goodnight everyone and God Bless.

Hi everyone…..Yesterday was Joanne’s birthday and she wants to say thank you to everyone for all the birthday wishes . I through a little party for her yesterday with the help of Carol and Tony. The patients from out of country , the nursing staff , Tony and Carol came to celebrate. The cake was beautiful and the bouquetof roses was amazing ,which I have to thank Carol and Tony for helping me aquire. The cake came with a set of candles which appeared to be enclosed in an artifical flower and when they were lit the pedals on the flower open up and “happy birthday to you” was playing and after about 30 seconds the center of the flower erupts like fireworks.Very impressive. We ate pizza and drank wine , beer , vodka, and a Chinese drink which was about 52% alcohol. Everyone seemed to have a good time and Joanne was smiling all night.      Today Joanne had another stemcell injection but we were waiting from 4pm until she was done at 6:30. I was told the doctor had trouble last time with the injecton and wanted assistance this time , so we were held up as we waited for the other doctor to arrive. Joanne is ok and laying in bed as I write the blog. It is going to be a late one tonight as I can not move her for 6 hours, but she is comfortable and not complaining. Tomorrow will be physio at9:15am and again at 2:15 pm but no acupuncture. I am hoping Joanne will fall a sleep before 12:30 and a get a good rest.     Our son Jason and his girlfriend Jenny will be arriving tomorrow and it will be so good to see them. I hope the weather holds good here until we all leave next Friday. This week has been like summer with temperatures in the mid 20′s and we have been outside everyday to enjoy some of it. I wonder what Jason’s and Jenny’s opinions of Shenyang will be. There maybe a good story or two to share with everyone, as they experience a little culture shock.LOL!!!! I will be sending more pictures you can be sure. So until then have a great day.   

Hello…..There seems to be a little confusion about Joanne’s Birthday. It is April 17^th, 1960, and that makes her 39 years old. Ha! Ha! Not 28 years old Maria . Aunt Shirley you didn’t have to wish a belated birthday as you were early and Sheri I don’t remember you telling me it was the 14^th of April.OMG! Joanne thinks I have lost my marbles. She thinks I have forgotten and misled everyone . So I will do what most guys do and have a beer.

     Well today was just a gorgeous day . The temperature was in the mid 20′s and there was a light breeze if any, plenty of sunshine and just a hint of smog. Joanne , Carol and I took a long walk to that mall,where I was at the other day . I was so impressed by it I wanted Joanne to see it. We were able to make it up the flight of stairs entering the mall with the help of a security guard. Unfortunately the center of the mall was inaccessible because of stairs and escalators. But we were able to see a few shops. Later we stopped at a small restaurant where Carol ordered us some food . I never no what to call it , other than describe what the food looks like. There was noodles, vegetables, and large chunks of beef. Kind of like chunky soup but the broth wasn’t like gravy. We used chopsticks to eat it with and Carol gave me the thumbs up for doing pretty good with them. Now for the broth ……this is when I got this great idea ….drill a hole through the chopsticks and use it like a straw . Chopsticks with a dual purpose …grab and lift the solids to your mouth and the liquids suck it through the chopstick as if it were a straw. Sounds like a great idea!!! Or just use a spoon. Anyways it was a great afternoon just to get out of the hospital for a while.

     Joanne and I want to update everyone with her progress. She wants everyone to know that somedays she feels as if she has a lot more energy and somedays she is totally fatigued. The sensations she has in her limbs come and go also. The doctors did tell us not to expect anything for 3-6 months , so we will wait and see. A lot of people that are reading this blog and are also suffering from MS have left comments and/or have emailed us wanting to know how Joanne is doing and if we can help them with questions regarding procedures etc. We intend to be as honest and as helpful as we can and will try to get back to everyone ASAP.. We will keep this blog going as long as we can and I will leave our email address at the end of this entry. Joanne has 2 more stemcell injections to go and we will be leaving in 9 more days.Take Care Everyone ……thanks for all the moral support it has been fantastic!!!!     Email:  brijo@sasktel.net

Hello everyone…..well Joanne and I are in our hospital room ,just hangin’ out listenin’  to some tunes and shooting the shit! Joanne is doing well after the small surgerical procedure done on her bedsore. No complications to speak of. She really hasn’t complained about any of the treatments with the exception of the surprise spinal injection that was a day early and perhaps without the soft bed and the little notice , it made it rough night. Tonight at 4pm she received another stemcell transplant and is resting comfortably while we chat and listen to internet radio. Yes we finally got an english speaking radio station airing from the usa. Sounds a little like home and it is comforting. But the advertising is such bullshit! LOL!!!!

     Today we wanted to go to middle street and do alittle shopping , but with physio acupuncture and the antibiotic IV that is administered 2 times a day , it kinda through a screw into the plans. Joanne said I should go and take a few pictures and take a look around. she must have been feeling more comfortable with being with Carol and the languauge barrier, so I did go out for a few hours. I sent a few pics for everyone to look at. The huge mall with the indoor open elevators ….well I got lost…yeah !! It’s true , can you believe it? This place was huge , with many floors and twists and turns , and when everything is written in Chinese ,well I got lost.  Just a little ….because I didn’t panic I just enjoyed looking at some different things you don’t see at home . Like the wooden bath tubs you will see in the pictures…..great for the cottage, I am sure! Tons of clothing shops, Electronic shops up the ying yang…etc.etc. Well after  3 hours of this I found a restraunt had a good meal (european restraunt) a beer and headed back to the hospital. Joanne was fine and it turned out to be a good day. It is now 8:30pm and Joanne says she is fine. About 2 hours to go and Joanne can sit up and get moved back to her soft bed. I know she will like that. So good night from us and good morning to you ………keeping you posted from Shenyang with love Brian and Joanne.

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.