Joanne’s MS Blog

The date is Jan.6/09 and I am sitting at this computer thinking I should be in bed. It’s way after midnight …but I suddenly got the urge to write in this blog. I didn’t read my last entry and all I can remember is that has been along time since I wrote anything in here. Joanne’s condition is this …her overall stamina has improved , she no longer has a need for a neck brace , and her appearance is more healthy looking. She still has no movement in her limbs. We were all hoping for some movement in her limbs by now but unfortunately there has not been an improvement there.

     If anyone is interested there is some news coming out of atlantic canada from a Dr. Tucker. He says he has found a cure for MS. He says that ms is not an autoimmune disease but is caused from measles. Dr. Tucker has tested I believe 6 patients with a new drug and has stopped ms . Please look him up …do a google search for Dr. Tucker MS

It is July 20, 2008 and Joanne is still at Wascana Rehab. According to the government’s website the approval for Joanne’s caregiver should be approved this week. All I can say is ….it is about bloody time. Ever notice when the government wants something from you it is  ….”NOW!!!!”, but when it comes to you …..you have to wait and wait and wait.                                                                                                           One noticeable difference in Joanne’s condition is the ability to keep her head up without the use of a neckbrace . Her strength and stamina are better than before China …..that is definite. However there is still no movement in her limbs but again it is just 3 days shy of 3 months and patients is required and lots of positive thinking. This week Joanne has been attempting to use an electric wheelchair with a head control device for steering. It is a little awkward as it takes time to get use to the controls and settings. This chair will come in handy for Joanne as it offers her some control in her daily life. Joanne and I hope everyone is having a great summer and we hope to hear from everyone soon . Will keep you all posted with the progress until then bye for now.

The days are flying by and summer has arrived in Saskatchewan. Joanne is still in Wascana Rehab as we wait for government approval for our new foreign worker. We should have her working for us by mid July at the latest, although nothing is ever guaranteed. Joanne’s spirits are good and the care at the rehab is good. To date Joanne does not have any movement in her limbs and it is 2 days shy of 2 months after her last stemcell injection. We remain hopeful as it is still early in the process and all I can say is time will tell . I am going to keep the faith and wait patiently and continue on with life as usual . Take care everyone and have a great summer. Will keep you informed .

    It has been a while, at least a couple of weeks since I have made an entry into Joanne’s blog. The past 2 weeks have been a tough time for both Joanne and myself. The flight home was absolutely draining and uncomfortable. We did upgrade our seats to business class from Bejing to Vancouver for the low cost of an additional $2000.00 per seat. Better seats for sure but the cost ……I think at least $1500.00 over priced. To top off the long flight home …I didn’t bring my keys to get into our house, thinking I had given Jason (our son) a copy of the key and I was also thinking Maria would be home when we arrived . But Jamie( our daughter) had a key , not Jason and Maria wasn’t at home. To make this long story short , Joanne and I spent the night of our arrival at my Mother’s house after some 30 plus hours of being awake for this trip home.  Joanne was so uncomfortable for 4 more days with the jet lag and body soreness that both of us were lucky to get 2-3 hours of sleep in each night. If anyone is going on this long flight be prepared is all I can say ….this is a tough journey.      Monday , Joanne’s new caregiver was supposed to start and she was a no show. She must have found other work while we were gone to China . I don’t know for sure because she doesn’t return my phone calls. This began my search for a new caregiver for Joanne and just a few days ago I signed an agreement with a young lady who will begin working for Joanne as soon as the papers clear immigration . This process takes approximately 2-3 months. So because of this Joanne had to placed in Wascana Rehab in Regina until the new caregiver arrives. This is something we have been able to avoid until now , but we will get through this minor set back and Joanne will be home as soon as possible.      There has not been any further improvements with Joanne’s MS since we returned from China.  She continues with physio at the Rehab and we keep hoping to see some voluntary movements in Joanne’s limbs. It has now been a little over 2 weeks since Joanne’s last stemcell injection and according to the Doctors in China we must give it at least 3-6 months before we see any improvements. So now Joanne works with physio and waits for the stemcells to take effect. As for me it’s back to work ……sometimes when it rains it pours. Bye for now!

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.