Woeful Wednesday

Odette:

Whoops off to a rough start today all round. Laurinda woke with the Flu (we're hoping it's not Swine) and then got caught in her nightie and had to ask the professor (a.k.a God) to wait a minute while she put something decent on. He wasn't amused.

It seems that is common to suffer from Sciatica pain after/between Lumbar Punctures. It happened a couple of weeks ago, but it wasn't too bad. This morning it started at about 6.00am and I was literally in tears of pain by about 7.00. It was excruciating. I was poked and prodded and questioned by all the staff including the professor. A pain plan was put together and administered. Chinese see pain medications very differently than we do in Western cultures, they would rather fix the source of the pain than administer strong pain medication. Considering I had already had Tramal and panadine forte and I was still dying I was happy to go along with any plan they had. I received electrowave therapy, IV form of anti-inflammatory and 1/2 a tablet of mild pain relief. They also told me to put a towel on my left bum but it is a bit hard with no hot water. It seemed like a lot of things happening at once, but they got it right and within 45 minutes the pain was gone. They sure know their stuff around here. We have been monitored quite closely today- any more pain and there would be NO stem cells tonight! Time is precious, our flights home are booked and we don't want any delays now. I really don't want IVs instead of Lumbar Punctures either, but with 2 hours to go things are looking good.

I got quite excited when another lady arrived with MS a few days ago. We had a big chat and she is in a very similar situation to myself regarding the progression of disease; limited mobility, cognitive difficulties - all the way down to our "Tourettes" as we call it. Unfortunately it has been too cold here to leave the room so I haven't been able to catch up with her and find out if the treatment has been as helpful for her. I hope so. There have been no other MS patients.

Thank the Lord that we both have a sense of humour. Today has pushed us in every way and we are still in good spirits. Once the pain was under control we realised it was to be another day without a hot shower (5 days now...) A solar system was installed a month ago without regard for the freezing Winter that kicked in about a week ago. We are almost at the pulling-out-our-hair stage. The bathroom door handle fell off, there is no heating or extra blankets for our concrete futons and our laptop died. Laurinda is becoming very angry at the poor man that never leaves the computer that has Skype on it, so she can have her daily dose of her babes. I am beginning to fear for both of them.

On no! Now there is not only no hot water- there is NO water at all! Help- send the helicopter for us. Please. They're coming to wheel me upstairs for my stem cells any minute and all I can hear are fireworks. What planet are we on? How can I be receiving cutting edge technology and there is NO hot water? How does the doctor scrub up with NO water? The Chinese honeymoon period is over! Well at least we're still laughing :)

Terrific Tuesday

Laurinda says:

We were confined to our room all day yesterday, so today despite the freezing weather conditions we decided to venture out to the open markets to save our sanity. Our only pair of jeans were away being laundered, so we had to wear our summery 3/4 length pants with socks pulled up and walking shoes (very sexy!). We walked out of the comfort of the heated hospital and the icy wind gnawed at our ankles. We jumped in a taxi and were dropped off at the dogs' heads.

First stop: gloves, beanie, leg warmers and tracksuit pants for Mum who was feeling the cold for the first time in years. Would you believe we had to buy size XXXL men's tracksuit pants and they are skin tight on her! Advice to anyone coming over, don't pack 11 skirts and think you'll buy some jeans over here when it gets cold if you are over a size 12 AUS. Next stop, Beth's Louis Vuitton bag, hmmm not sure if it's quite her style but fingers crossed. Then a couple of outfits for the girls and a pack of 10 Nike socks for less than $1.

Odette says: 

We rushed back to the hospital in time for the second round of PT and electrowave therapy. Today the muscles are still tired and sore from 4 hours of walking on Sunday, the MS equivalent of running a 10km marathon. Big rest in the afternoon while Laurinda popped over to Lottemart for a few essentials. She came back with 'Annie' a beautiful doll who speaks Chinese. The young Chinese girls at the hospital were very taken with her and loved conversing with her and kissing her.

We have celebrated other patients success along with our own. Here are a few of their stories (names omitted for privacy):

• A little Norwegian girls first steps today. Her dad is over the moon. His dream of having his daughter walk into kindergarten with her friends next year is coming true.
• Our mate Kev smelled coffee and saw shadows directly in front of him for the first time in 12 years.
• An American girl left last week able to put her hands out and touch a wall instead of crashing into it as her undeveloped optic nerves began to grow.
• A little Irish boy has stopped having seizures and his parents are very hopeful for even more positive results.
• An elderly Chinese lady is seeing light after years of darkness. She was complaining the lights were too bright following her first treatment.

These results are very exciting however, we know that stem cells need to grow and multiply and the best results are still to come in the 6-12 months after we all leave here.

 

 

Saturday 7 November

Its very difficult to know what's been posted on our blog when we can't see it ourselves, or which photos Jarrod has chosen to display, but everyone seems to want news, so here goes....

CONFIRMED MEDICAL RESULTS

• Muscle strength in legs.....almost normal!
• Muscle tone in legs............almost normal!
• Tingling (pins and needles and elec shocks) in legs...all gone!
• Blood Pressure....lowest in 7 years!
• Neuro reflexes...almost normal.
• Cholestorol....on target.
• Eye-sight ....improving.
• Pain relief.... reduced.
• Anti-depressant meds...reduced.
• Walking for miles!
• Weight...stable (ggrrrr)

I had my 4th treatment last night - 2 more to go.  I have organised the last one to be L/Puncture rather than IV.  No problems there.
I cant speak for everyone else, but this is the stuff of dreams and miracles for me.  Now I'm going to plan a whole new life for when I get home.  My new Nikes are getting a work out and I am loving being outdoors again after all this year on my butt in front of my computer or in bed.
I'm going to live again!

...


Laurinda was going a bit stir crazy with cabin fever, so I encouraged her to round up a few patients and carers last night and head out to the Paradise Club.  It was good to see her get dressed up and excited.  She must have had a good time because she was the last one home and was locked out of the hospital LOL.  Being a resourceful girl, she somehow found a way in and to her bed.  She and a few others have organised a couple of cars to take them to the downtown Markets today.  Because I had 2 treatments this week, I had to miss a little therapy, so I stayed in today to catch up.  A nice rest too, so my stem cells can do their thing, and a quick nip over the road for a few treats before she returns.  I have no idea how I'm going to cope without Owens massages each day once I'm home.  I may have to bring a Chinese boy back with me!  Ok, just enough time to sample a few snacks before electric wave therapy.

Here's a few more photos:

 

Hospital photos

Here are some photos from the hospital...

 

Therapy begins

It was lovely to sleep with the extra padding last night. Mum had her first PT session this morning with Owen and she feels great. She did stuff she didn't know she could even do. She stood on a balance board throwing and catching balls, walked with weights on her ankles and climbed a huge step 25 times! She received a lovely foot and leg massage too.

Then the Doctors visited again to explain test results. Blood pressure too high, cholesterol too high and optic nerve damage in left eye (mum wants me to write 'nothing too serious' here) but I have now become the smoking/eating police and she's not impressed.

Next was acupuncture where mum lay around for half an hour with needles sticking or her hands, legs and feet. Then the wait.......

3.00pm.....time for her first stem cell injection. Mum says 'let the miracle begin!' She was feeling very emotional at the start after months of planning and hoping, here she was receiving her precious cells. I taped some of the special event but mum was crying too many tears of joy to talk. Mum says she 'feels great, not superwoman yet, but on her way'. She has been resting this evening so she can venture out with me tomorrow. There is no therapy on weekends so we are hoping to do a spot of sight seeing.