I'm leaving on a jet plane.....

My last night in India we went to the Imperial Hotel, it was amazing, very well to do and really romantic. Unfortunately Sylvia had a migraine and had to stay home and sleep, I was in two minds leaving her, the Dr gave her an injection and she slept, we missed her.

This picture is the alley way entrance into the other hospital. On Friday i was sent to have my last procedure. I was nervous because I was told i was having the spinal injection which caused me so much pain last time. When I arrived I asked to speak to Dr Ashish and he said instead he would do the epidural catheter, however to be honest I think he did the injection but gave me a local anaesthetic. To be honest I don't care either way just as long as I got my stem cells and didn't feel the pain. The procedure went well, i was transferred back onto my bed and like before bricks were placed under the foot of the bed so my feet were raised up and i lay there for just over 4 hours.
During my last physio session Shivani measured my arms and legs which showed slight changes. We worked out that I've probably had about 10% improvement which for an MD patient is good because initially they focus on stabilization. Also my CPK levels are at 60, let me explain, CPK is an enzyme that the muscles release when they are breaking down or traumatised, for example when someone has a heart attack the heart muscle would release high levels of CPK. After reading Dr Geetas book other patients with MD had levels up to 4000, they aim for the levels to be below 1oo, so because mine are at 60 it means the Dr Geeta has given me enough stem cells to stop the muscle break down and now we begin the journey to re-grow the muscle. However, as I explained previously I need to continue with the stemcells so that my CPK levels don't rise again.
I'm planing to return at the end of February, this time I will need to do some fundraising as many others here have done, so if anyone has a good ideas please let me know.
Because I know people are reading my blog from all over I will up date my progress at home as the stemcells will continue to keep working......so until next time.....go well!!

Happy Diwali !!

The celebration for Diwali is very similar to Christmas. So on Diwali eve Dr Geeta (pictured left with the nurses) arranged for a priest to come in to perform the 'Puja' (ceremony) it was amazing to be apart of the rituals. Diwali mwans celebration of lights, so all aound Delhi buildings were lit up, our building looked beautiful and candles are a big part of it too. All around the outside of our building candles were lit, oh and did i mention fireworks!! Imagine the Australia Day fireworks, the finale, well thats what it was like for 8 hours straight! And we wanted to be apart of it too. John (guy below in picture with me) and Sylvia went to the markets and bought rockets, crackers and lots of others that I have no name for except - Oh my God...run!!! We just set them off out the front, the ward boys helped us and were just as excited. You can see in the picture below where we were sitting, well John set some off and threw it, as it went off Sylvia ran and hid behind me!! We were all laughing saying...what a great carer hiding behind me!!!

The next morning at physio Dr Geeta came in and asked me how the Diwali celebrations were for me and i commented that we had 'some' fireworks....'Some' she said....really Claire you had 'some'...I saw the mess coming in! John was doinf physio in the other room and I suggested she go and see him and laughed, but she didn't mind, everyone up the street was letting them off and we did offer Sylvia to sweep up the mess! I have to say tha John definately has a 'cheeky' way about him...he's a charmer and only he could get away with this, he's an awsome guy. We were just like kids, painting our faces and just forgetting why we were there for just a few minutes.

Our day at the pool....

6 Aussies and 1 Yank descend on a quite resort. Only a sister could have this pleasure to tip her bro into the pool!

I ask you... why walk when you can sit! As I write this I'm standing at the computer listening to Neil Diamond which always reminds me of my parents, I can't help but sway to the music and smile. Sylvia has ventured today to see the Taj Mahal and my sweet friend Tracey has given me hand this morning, so I want to practise my standing for a bit longer.

Dr Geeta came to see me yesterday and I told her that the last procedure was a 'walk in the park' unlike the last one, she gave me perplexed look and said 'you want to walk in the park' I laughed and explained further. I'm hoping they will do the procedure again this week to really boost me up with stemcells before I go home. Dr Geeta asked me how I felt about going home and offered the option to extend my stay, how tempting it would be, but I explained that my 7 year old daughter would hunt me down!! But on reflection, my feedback to her would be to allow MD patients the option to stay 3 months like the MS, Motor neuron and Quad patients do. It took a while to get into the physio therapy, starting at 20 minutes once per day, then after a couple of weeks I was able to start in the afternoon and now the morning session lasts 1 hr 15 minutes. I feel like I'm finally getting into it all now at 7 weeks. I leave this amazing experience in one week. I keep telling myself there is a reason for everything, who would have thought I'd even be here 6 months ago, so I continue to teach myself to let go and have faith in my life purpose.

Some photos.....

This picture was taken just before my procedure.


Working with Shavani in physio, you can see by the look on my face it takes me lots of concentration to balance!!

the photos are a bit close so its difficcult to see what I'm doing, Shavni watches me closely while i practice side stepping holding onto the wall. after morning physio I have to stand for six minutes, overtime I've been pushing the walking frame away from me, bit by bit. But over the weekend as i was standing a ward boy with out warning me pulled the frame away, i went into huge anxiety because even though i wasnt holding it i knew it was within arms reach and when standing i tend to focus on one point. I realised then the frame had to go completely for my confidence. So the next day I stood near the physio bed and told Shavini not to get the frame, she wasnt sure at first. I knew the bed was behind me if i needed it, in fact i had to let go of it first! It took all my emotional strength, positive self talk to let go. Well, I did! As Mark reminded me, my bum was close to the bed still, but what was important was that there was nothing for me to reach out to. I kept staring at the ground and Shavini encouraged me to look up. I also discovered that standing still is much harder than if you slightly shift your weight from one leg to the other. The first minute is the most difficult and then my confidence grows, I even talked a bit while standing. (shavini had to remind me to breath and relax my shoulders, I get a bit tense......has anyone noticed that ha ha!!) These are just small steps in my journey, but for once I felt proud of myself and thats not an easy thing for me

Start spreading the news..Marks leaving today...you really had to be apart of it!!

Have you ever met one of those people that when they walk into a room the energy shifts and you just feel up lifted, Mark is one of those people. The lift was broken for over a week, if you were lucky it might work once per day. Last week when I thought i was going for a procedure they cancelled it due to the lift not working. So we were stuck on the third floor. My physio therapist came up to my room so i didn't miss out. My room is probably 4 metres by 3 meters in size. So I lay on the bed to begin my exercises and Mark decided he'd tidy out the wardrobe. He opened one sliding door and rummaged through the plastic bags, folding clothes and rearranging shoes, then slid open the other side and moved a few things, pulled out the plastic bags, discovered a kilo bag filled with sugar packets and then another filled with Nescafe packets, he began sorting them neatly, then slid open the other side again, this went on for a few more minutes and my physio and I couldn't stop laughing, I had to ask him to either sit or leave, even though the room had become very tidy! In the afternoon Shavni (the therapist) came back up to my room so I could practise my walking and Mark was right beside me, speaking encouraging words and being very positive, for what ever reason I just kept laughing so I had to send him to sit back down again, I haven't been able to coordinate walking, breathing, laughing, shifting the weight and moving the frame just yet!!
Seventeen of us went descended on Spaghetti's restaurant on Saturday night to celebrate Mark's and Laura's (she is a patient from Argentina) time in Delhi. It was great to see everyone in a relaxed setting. The next day we went to a local hotel and paid to sit by the pool. We were in 7th heaven, capturing a small piece of normality. I have some great photos that I'll down load in my next blog entry. It was such a good feeling being in the water, walking up and down the side of the pool. Mark flew out Sunday night, he will be greatly missed by many here, especially me.
Sylvia flew in Sunday night like a breath of fresh air, full of energy. I was worried about her coming in alone at night so one of the patients here John went in the Taxi to meet her, which made me feel so much better. We curled up in out beds, Sylvia on the mattress on the floor and had lots to chat about. I slept the deepest sleep since I've been here, mixture of swimming and emotionally drained.
Monday morning I finally went for my procedure. Sylvia woke up early, had a cold shower and started to motivate me. I went to my physio session first, my body felt a little weak and for the first time in weeks i had some pain in my right shoulder, I'm not sure what I did to it but i wasn't as strong in my exercises.
Sylvia was so excited during the taxi ride, taking lots of photos. We arrived at the other hospital wide eyed and ready. I once again signed paper work and headed into the left with the wire door. In my room the nurse took my blood pressure, i changed into a theatre gown and a drip was put into my arm with fluids and antibiotics. Dr Geeta and Dr Ashish came to see me which was great, it always relaxes me when I see them. I was wheeled into theatre, rolled onto my side and curled up into a foetal position. Dr Ashish came in and explained to me that he would firstly numb the area with local anaesthetic then he'd insert the epidural catheter. He proceeded to press around my spine to find the right place, this took about 10 minutes. The anaesthetic stung at first, but i was grateful for the area to be numb. I didn't feel the tube going in and when the stem cells were injected the pain was minimal, the solution went up my spine and then seemed to fan outwards. I think the whole process took about 30 minutes, then i was wheeled back to my room, transferred onto my bed and as before the bottom legs of my bed were raised with bricks. I had to lay there for four and a half hours, then i could roll on my side, then sit up. While i was laying there Sylvia very lovingly rubbed my feet to help me relax and then i encouraged her to go for a walk with one of the other carers. When she returned she had a big bunch of flowers for me, they were beautiful. I slept on and off and Sylvia read to me, which was sweet of her. Six pm came and i was grateful to move. The pain wasn't to bad, as long as I didn't want to breath too deeply, sneeze or transfer!!! Our taxi was called and they brought our dinner on a tray to carry back with us, I was imagining wearing it during the taxi ride. As we were leaving I spotted two Indian men who live in the UK and one guy was here for treatment for his diabetes, I'd met them first with Nicki, then with Mark and now Sylvia. They commented on all the friends i have with me and i responded that i was very luck to be surrounded by good people, but Sylvia announced....'no way its because she's got great boobs!!' We laughed and the men commented, 'yes we've noticed that' White women are very popular in India.
I was glad to be back on familiar territory and laying flat in bed, a couple of neurophen later and i was off to sleep.
I felt great today at physio, no pain. (woohoo!!) Well no rest for the wicked, I have physio again in 5 minutes where I'll be putting on my foot supports and practicing my walking, so i need to get organised......until next time......x

Taj Mahal

(up stairs at the Taj Mahal)

(this photo is the entrance gate into the Taj Mahal)

Hi Guys! What an experience we had on Saturday. Five of us from the hospital arranged a driver to take us on a day trip to see the Taj Mahal. My energy levels were good so i was up for the 9 hour car ride (4.5hours each way) Our driver picked us up at 7am and we were on our way. We were really excited, even with the early start. I called the nurse so i could sigh myself out (a blank piece of paper in my file that she will complete at a later time....'I Claire Anderson am leaving the hospital and take full responsibility....etc) and receive my stem cell injection.

The car ride was eventful in a way that can only take place in Indian traffic. We passed a few elephants and several camels.

We stopped at the state crossing and our driver went to pay the taxes, he told us not to open the doors as it is a bad area. Several people came tapping on the window trying to sell various products from chess boards, jewellery, peacock feather fans and young boys with monkeys and snakes wanting to sell a photo opportunity. Most of us in the car didn't make eye contact. Mark decided to discuss with them why he didn't want to purchase their products, after a while the crowd grew around his side of the car, he was polite explaining and saying 'no thanks mate', but the more he spoke the more he attracted attention.

When we finally arrived at the Taj Mahal we transferred into an electric car which the boys easily transferred me into. Due to the pollution levels cars are no long allowed close to the building. We were dropped as close as we could go and then bought our tickets and given a bottle of water. The gate entrance was amazing, we walked through and i was carried down about 5 steps. Then approaching the Taj Mahal the guide explained the history behind the building, the King built it as a monument for his wife after she died in child birth, her 14th child!!! I can't remember how many wife's he had, but from memory he had about 98 children!

The steps up into it were very steep, made of marble and very crowded. The boys each took a corner of my chair and carried me up. What a fantastic experience, such an incredible building made of marble 6 inches thick. It was incredibly hot and i got dehydrated by the end of the day, but it was well worth the experience. We arrived home around 8.30pm.

Tomorrow I'm going to the other hospital for another procedure, this time one of the doctors came to see me and explained that I will be having an epidural in my back and unlike the spinal cord injured patients who go for 3 days, mine will only be 1 day. Soooooooooo......lets hold our breath and see how this goes. Hopefully the lift will be working again tomorrow, it broke down yesterday and the ward boys had to carry each of us up, we're on the 3rd floor, there's 4 of us to carry up, never mind on the 1st and 2nd floor. This morning for phyio the therapist came up to my room to do my work out, so at least I didn't miss out.

Well...wish me luck for tomorrow......Ciao x

Changing of the guard...

Hi Guys....let me just tell you that today for the first time in 2 weeks my pain has reduced, I'm went back on anti-inflammatory yesterday and was given 'spray'. The spray made me laugh because Dr Geeta came into physio and told the therapist to get the 'spray' which she did, Dr Geeta sprayed down my back and as she did i whispered to the therapist 'what is it?' she replied back to me in a whisper....'its spray'....I told Nicki after and we laughed, its just typical of the communication between patients and the staff, of course i knew it was spray, but what type of spray! In the end it helped so i was just grateful for the relief.
Mark arrived Friday morning at 11am, theres a story here but I'll get to that in a minute ...Nicki flew out on Friday night, we went with her in the taxi to the airport. I felt quite choked up saying good bye, 'little nicki' (as she is known here) is such an angel, she did a great job helping her aunt. Its not often you get the opportunity to have 'girly' time together because we all have responsibilities. Even though some experiences we don't need. Thursday morning we woke to the fire alarm going off, Thursday was Gandhi's birthday so it was a public holiday here. The fire alarm occasionally goes off so we ignored it, but this was different. in the stairwell on the second floor a fire broke out in the 'breaker box' the plastic melted and caused an electrical fire. We lost power for an hour or so and it freaked us out a bit because there isn't any other way out of the building. But one room on our floor has a balcony so we created idea of a fire escape in case it happens again!
So Mark arrives and i organise a paid taxi to pick him up from the airport. The driver collects him and then needs to stop for petrol. When they leave there the driver asks Mark if he'd like to stop and have a yogurt style drink. Now...Marks kinda feeling like he's filming an episode of Getaway India, the scene is set...the horns blowing...cows standing near by, the aroma of India and the sun is blaring and yes of course Mark wants to taste the exotic tasts of India. The man preparing the drink rolled between his hands a thick white substance called yogurt holding it over a cauldron. A Shelf above had small glasses filled and Mark drank one of them. When he told Nicki and I we laughed waiting for a bodily reaction which every westerner has in the first week or so here anyway. Most of us were shaking our head in disbelief. I think this is going to be the first of many experiences Mark has during his Getaway India expedition. Hence we had a quite weekend and didn't venture far from the hospital.
Monday afternoon we had a group question and answer time with Dr Geeta and Dr Ashish in the foyer with all patients. It was very informative hearing a bit from each patient and also Dr Geeta gave us recent examples, taken from an external source such as MRI's etc, to show us how other patients have experiences the stemcell process. One example in particular stands out, an Indian woman with MS who after 3 years of treatment has been cured of MS, the myliene sheath in the MRI showed normal, it was so amazing and great that the tests were done by an external medical centre. I asked a few questions about MD and she explained it by using the analogy of a bowl of apples, one apple is bad and can send the others bad, so she needs to keep giving me the stemcells to stop the others going bad, for me, it will be for the rest of my life. We asked about the loop hole on the Australian government and she said that the Australian patient has been given permission to bring stemcells in. There is currently a lawyer in Qld working on this development. I know it will take time and Dr Geeta is protective if the treatment being respected and not using it to take advantage of patients. She mentioned that she had been offered money to not proceed with the treatment but she declined, so the other aspect now for her is her safety.
Dr Geeta explained to me that during the gestational period of a baby around the 16th week a woman can feel a baby kicking , which means muscles are stronger at this time. I really believe what is happening in my body is only a scratch on the surface to what will occur when i return home and the cells have time to mature. I'm feeling more hopeful and excited today than i have during my time here, being in less pain always helps!!
Well I'm off to afternoon physiotherapy now......:-)

These are the Days of Our Lives......

I haven't written for a few days because I've been feeling grumpy....in fact i think my emotions have been reflective of all the seven dwarfs personalities!! Michelle flew home on Wednesday night, I was sad to see her go but also realise its a step closer to coming home. Her stay here was great, the perfect support and shopping companion, love you sis!

Thursday moring I woke in a lot of pain and could hardly move. I had difficulity participating in physio. One of the Drs examined me and said there was swelling, so presciibed anti-inflamatory medication and a pain killer, I googled the medication but couldn't find an explanation on them, but to be honest i was in so much pain i didn't care. Friday morning I was only slightly better, my physio session was minimal and I still wasn't able to practice walking. I went to yoga class but only did a few stretches. I'm still getting my injections morning and night, 2 in the morning and one in the evening.
Dr Geeta came to see me on Friday afternoon. I tried to explain as best I could the pain I was feeling, with out sounding like a whimp! I asked her if its common for MD patients to be in so much discomfort. She said to a degree because we feel everything unlike the spinal cord injured patients, but she added, 'you are frail' then smiled at me.....told me to just rest and by Monday I should be fine. I was processing what she said, specifically 'frail'....i think my ego was dented as i just couldn't let it go, I may have driven Nicki a bit crazy as we'd be watching TV, then all of a sudden I'd come out with....'I am so not frail'! I just felt so pathetic.....think I need to work on letting go ha ha

Saturday at physio I was still in pain and couldn't perform th exercises as well as i wanted, i became quite frustrated and started to cry. My therapist was worried thinking I was in pain, which I was but more than that it was the pain was stopping me from doing what i wanted to do. I'm very aware that I'm on a time frame and I don't want to lose a second. I dont have time to be sitting aroung resting and in pain!!! gggrrrr! Saturday afternoon I decided to have a sleep and watch a movie. Around 7pm we had a phone call advising us that more bombs had gone off in Delhi, 8 km from us, to stay in during the evening and avoid markets on sunday.

Nicki and I slept in on Sunday and took the morning slowly. Around lunch time we took a taxi to the local shopping mall. The security checks were more intense than previously due to the bomb blasts. The shopping centre was very busy. Nicki and I enjoyed coffee and some chocolate mud cake smothered in warm chocolate sauce and icecream...ummmm....then i returned a pair of jeans that didn't fit haha...geee Claire..wonder why!

Todays Monday and my physio session was better, even though the pain in my lower back is still there. Two injections this morning as usual. Nicki has braved the streets to get us take away coffee. Shes counting down the sleeps, 4 to go now until she returns home, so there will be a changing of the guard this Friday.
Thanks again for you supportive comments and emails....it really helps xx

One Flew Over the Cuckoos Nest

Monday morning just after breakfast the nurse knocked on my door and announced that I would be going to the other hospital for my first procedure. I felt my heart sink into my stomach and asked what procedure will I be having, she said not sure, 1 day procedure, back later today. I went down to physio and did a light session then at 10.15 we left. Driving there was definately an eye opener, i have to keep reminding myself we are in a 3rd world country, its difficult to explain, but there is just such a contrast here. We went down a small street which was a dead end, the van stopped, i looked around and thought to myself 'i'm choosing to have medical treatment here'! I couldnt see where the hospital was, there was a small alley way where a huge black cow was standing, the taxi driver pointed in that direction. Michelle pushed me quickly past, squeezing between cow and wall, worried it might move suddenly. We walked down, found a door with a ramp and the ward boys came out to help us. The entry was small and crowded, behind a glass screen sat a nurse and she handed me paper work to sign, i read it and it stated 'that I claire Anderson have been explained the procedure'....ummmm...nope...i asked the nurse to explain what i was having done, 'injections in back'...mmmmm...ok...so i just signed and thought lets just get this started. We went into a very narrow and long lift, the ward boy pulled the iron doors closed and we went up. The hospital reminded me of what it might have been like in war times, it was a time warp (either that or a scene out of a B grade horror movie) I was watching Nickis face and could tell her stress levels were rising. The nurse gave me a gown to put on and i could leave on my leggins, soon a stretcher came in. Now from what I'm told, patients can wait hours to go to theatre, we only waited 20 minutes. Before they wheeled me off i asked about pain medication, 'no pain' said the nurse.....mmmm...i doubted that. As they wheeled me off i could see tears in Michelles eyes. Back into the lift and down to theatre. The theatre made me giggle, there are so many exposed wires, i know i shouldn't be judgemental, but for a country that can use high tech sicence, this is a surprise. I was transferred onto the operating table, the nurse made general chit chat because she could see i was nervous. Soon Dr Ashish Verma (Dr Geetas partner) came into theatre, i felt reassured to see a smiling familiar face. 'How are you feeling Claire' he said, 'I'm nervous' I said, 'No problem'...I asked if it will be painful, 'not really, you'll feel a bit of heaviness, but it is tolerable'..ok...well i've just got to go with it. They rolled me onto my tummy, put a pillow under my hips then wound the bed so that my head was much lower and a clamp was put on my finger to measure my pulse, however it came loose and i flat lined ha ha, these things just made me laugh, hearing your own flat line. So with bum point up Dr Ashish basted it with a brown steralising solution. The he began injecting the cells at base of my spine or top of bum crack! When the solution started going in, let me just tell you, i knew i was alive. It took three pushes to empty the syringeand i felt every push. Its like the solution was trying to make a path up my spine where there wasn't one, it felt full and very heavy, i let out a little cry and tried to breathe, ok next syringe an he started, i held my breath, by the end tears were streaming down my cheeks, i asked him for 5 minutes before he began the third. He asked me where i could feel the solution, it was up the left side of my spine the slowly moving out towards my left hip and waist, he was happy with that response. So he began with the final syringe, i could feel my right leg twitching and the nurse had to hold it still. I normally have a hight pain threshold from pervious experiences of surgery and treatments, but this really hurt, after the second push i asked him to stop for a minute, i couldn't breath, the he finished it and he handed me a gause to wipe my tears. All the time i layed there, i prayed for this treatment to help me, i'll suck up the pain, i'll do it again if i have to, but please make it work for me. The table was tilted so that the cells would move a little to the right side of my body but i couldnt feel anything, but the heaviness eased slightly. I lay there for about another 10 minutes then they transferred me back to the stretcher, my body felt fragile and i was nervous to be touched near my lower back.
As they wheeled back into the room i could see Michelle and Nicki's faces, they looked like expectant fathers. i was transferred onto my bed, then the ward boys came back with two bricks to elevate the end of the bed, we laughed! I had to lay still for 4 hours, at 4pm i was allowed to roll on my side for 30 minutes then i could sit up.
The girls sat, looked at my face and saw my tears, they had tears too, i can't actually share with you the words i used to express the pain, not language becoming of such a fine young lady! Nicki decided she'd had enough, she lay down on the spare bed, pulled the blanket over her head and mumbled something like, MD's ok, can we go home now! Then she went to sleep for 2 hours. I slept for about an hour, then woke to see lunch had arrived. Have you ever tired eating rice while laying on your back! Michelle gave me a few spoon fools but it rolled off the spoon to easily, so i decided to eat Nicki's LeSnack cheese and crackers, museli bar and then bit later some chocolate. The girls took turns rubbing my lower legs and feet because the ached, i kept asking the time, waiting to roll over. Finally 4pm came, Michelle helped me to roll and i lay there until 4.30, sat up and Nicki started packing our things and saying we're leaving now. She helped me change back into my t-shirt quicker than ever, she made me laugh. Finally at 5pm we were allowed to go home.
The day felt long and was emotionally draining. Dr Ashish will give me a week to see how i'm feeling then consider doing the injections again, but maybe this time from the top of my spine. I'm going to ask for something for the pain, i'm not sure how lucky i'll be because the opinion is that this procedure doesn't warrant it, its only minor....mmmmm....see how i go.

Have you seen the washing man....the washing man!

Getting some pointers from Dr Geeta in physio, in my room having an IV drip and saturday night dinner in foyer.

Ok, bear with me while I explain about the washing man. He's a bit like the phantom, we know he exists but no one quite knows when he'll turn up or what he'll turn up with! We often walk around asking each other if they've seen washing man and you can guaranteed he's just been or still coming and he'll arrive Indian time, which means you have no idea!

I started Friday morning with physio. Dr Geeta turned up and the atmosphere always changes when the 'boss lady' is there, we are pushed a little more and try things a little differently. I had a really good physio session, noticed certain muscle groups are bit stronger. Dr Geeta watched me walk and made some suggestions, I need to remember to shift my weight from one leg to the other before stepping, relax my shoulders more, breathe, concentrate on lifting my toes and dont swing my legs...ok...so she wants me to do this all at the same time, being a woman I know I can multi task, but how much can a koala bear!! Lots more practice to do.

Fridy afternoon we went shopping, then came back to do yoga, after we went to an Italian resturant for dinner, it was Andrews last night.

Saturday morning i didn't perform very well at physio, i think i did to much the previous day and was fatigued, even the physio noticed i wasn't as strong. I tried on my foot supports again, i seem to continue having difficulity with them and its frustrating me.

After physio the nurse told me i'd be having my first IV of stem cells. I was looking forward to seeing how my body would react. About an hour later my body started to ache all over but specifically those areas of my body that are the weakest, Michelle rubbed my feet and lower legs to ease the pain. i said to her 'haven't we done this before' remembering when i had scapula fusion surgery and she rubbed my lower back until i went to sleep. I slept for several hours and woke up at 5.30, feeling a little better but still aching. We went down stairs to have the usual saturday night dinner get together. It was one of the carers birthdays and he brought cake, so of course i had some and the sugar rush made me feel better for a while, that and the McDonalds, which normally at home i'd never eat, but my body is over eating curry already. I feel like I'm in an episode of Survivor India, 'your challenge if you choose to accept it is to survive on curry for 60 days curry' :-)

Today is sunday and i'm taking it easy, will probably get together later and play cards to pass the time, still feeling quite tired and want to be running on all six cylinders for physio tomorrow morning.

Groundhog Day!!

Hi Guys....the picture is of Michelle and I outside the hospital, don't look too closely we were feeling hot, bothered an grumpy!! For those of you who have seen the movie Groundhog Day, you will know exactly what I mean, same thing different day!! Tuesday started with physio, i do about an hour or just over now, then two injections, this time one in my arm and the other was shared in each thigh. We decided to go to the Hyatt for lunch, they have a buffet. It was nice for a change. Tuesday night we met in the foyer with a few other patients and their carers to play cards, from my perspective i was playing for sheep stations! Played a few rounds of 21 and then Uno. One of the carers took a walk to a bottle shop and bought a few bottles of bacardie breezera ($1 each!) Patients can't drink but the carers were in their element sitting back having a little reminder of the comforts of home, we once again ordered pizza, it was great fun.

After physio on Wednesday we met with Dr Geeta, it was lovely to sit and ask a few questions, except I couldn't think of anything being put on the spot. We chatted for a while and i my memory began to work again, i asked for a hand rail in the shower, which i got and is bit easier. Dr Geeta told me, which i didn't know, that she doesn't normally take on Muscular Dystrophy patients from overseas because the treatment is continual due to the progressive nature of MD, so what she has to do with me is figure out how many stem cells i need to stop the muscle detoration then a few more to rebuild the muscle, its more difficult than treating a spinal cord patient, infact the physio therapists work them much harder than me. I asked her why she allowed me to come and she said after seeing my video she couldn't say no, she went onto explain how a patient from Qld who has a spinal cord injury and is a mother of three said to Geeta that she didn't want another mother to go through what she has and was going back to Australia to spread the word, i wonder if because I'm a mother it helped her to decide to treat me. She suggested i return in about 3 months and the just whenever i feel my body going through a period of detoration. She also told me of another patient who works for the Labor party on a Federal level and has motorneurons, told her about a loop hole in the Australian regulations on treating incurable and terminal patients, they can import medications. Dr Geeta is goint to forward me his email address, because as she see's it, once she works out how many stem cells i need, i could inject daily (like a diabetic). I know thats a long way off, but its something to work towards and is hopeful for having treatment at home, so now i just have to get intouch with this guy and follow it up.

After meeting with Dr Geeta we went to Deelhi Haai, a local market. Andrew came with us and enjoyed the shopping experience, in fact he ate from a cart there and was still standig to tell the story last night, we were not that adventurous. It was so hot, when we returned Nicki and i both had headaches, think we were dehydrated, Nicki fell asleep for a while, i went to yoga with Michelle and then had an early nigh. Because i have to be careful what medicatiuons i take i asked the nurse for something as my pounding head was making me sick, she also came back with vitamin B12, vitamin C complex and folate, from what i understand my blood tests came back that i had low iron levels, but to be honest i didnt really understandwhat was explained to me. (yes, i will follow it up)

Today is Thursday and i'm taking it easy, i feel bit drained. Michelle has gone shopping again. I completed physio and the therapist added a few new exercises, my new foot supports arrived, but i couldn't stand in them, hard to explain but basically they sit too high up my calf, so they will be cut back and we'll try walking in them tomorrow. But the good news is that my 'gait' is improving, my right leg is almost walking normally, both Nicki and the therapist watched me walking with the frame made the commented it has improved, still long way to go from my perspective (but I'm my worse critic!!!!!!) the progress is slow and steady and thats the important thing. (keep telling me that!)

The face of Delhi changes in 30 minutes

Some of you will be aware of the bomb blasts in Delhi on Saturday night. There were 5 blasts one was about 15 minutes from us, however we felt nothing, 90 people were injured and 30 died. We've been advised to avoid open markets but can go to the mall as there is security to get in there. I think it is hard for those who live here as its their home and safety which has been damaged. I don't feel concerned for my safety.

Saturday afternoon we went to the local market, i have to admit it was a little stressful walking on the road with the traffic. We only stayed an hour, enough time to buy some Dvd's, bath mat and iced tea. On the way back Nicki pushed me, i have to laugh because she was so focused looking left, then right, forward behind, looking for not just cars but tuk tuk's, bikes and people all at the same time mind you, she just went for it, as she ran across the road yelling aaaaggghhh!!

Saturday nighs dinner in the foyer with the other patients and their friends, parents, wife's, husbands, siblings, was great, about 19 of us. Its interesting to hear each others story, the people they had to leave at home and who is with them. There are mostly Australians here. We ordered pizza from pizza hut and shared with some others. Everyone here is at a different stage in their life, they are here with hope in their heart, the strength and determination to succeed, to do everything they can to suck the 'marrow' out of life, I feel so at home here (on a personal level not physical) even though we are strangers we share an unspoken common bond. Its so great to not verbalise my feelings and someone just knows what my soul speaks by a simple look or a smile - they dont imagine what its like, they know.

Because of the bomb blasts our plans to go to the market changed on Sunday. Nick left at 6.30am with Andrew to visit the Taj Mahal and returned at 9.30 pm. It was a long day but she was glad she did it. Michelle and i stayed at the hospital, the day dragged a bit, we even got excited when lunch arrived (we are so sad!)

Even though there wasn't physio on Sunday we still had injections, just one in the morning and in the evening. Monday morning i went through physio, then had an injection in my arm and shared the second injection in each calf muscle, it feels like a bee sting. I was then measured up for new foot supports, the physio therapist felt the ones i brought with me don't support my foot enough, apparently they will arrive in about 3 days, lets see how we go!

I can't believe one week has gone by already, 7 more weeks to go. Thanks again for all your posts, hearing from friends and family really helps keep my sanity, well some of my sanity!

Almost organic!

Michelle went to the market yesterday with two other carers to gather supplies, specifically eggs as we are very excited to learn how to boil them in the kettle. The sales pitch at the market for the eggs was 'almost organic'!! Only in India can something be almost organic, its become the local joke.

Went through the same routine at physio, then i put on my AFO's, and walked for about 10 minutes using the parallel bars, going to take me a while to get comfortable wearing shoes and socks again. I then had two injections, one syringe in my arm and the other syringe was inected either side of my spine (lower back). At night i recieve one injection in my right arm. We met up with Kevin (he has a spinal cord injury and lives in Sydney with his wife and baby girl) his mate Andrew to watch a movie in the foyer where there is a TV and DVD player, no airconditioning there but we decided the company was more important, also they have TimTams!! Talking about food, forgot to mention that Nicki and i recently ordered a bowl of chips at a coffee shop, when it arrived we bent our heads down to look at chips, looked at each other and then glanced up at the waiter who had a perplex expression, we counted them, 13 chips, it probably doesn't seem that funny but we laughed thinking that someone somewhere was looking out for us!

I had a nanna nap in the afternoon then went to yoga, (see picture above in our room before yoga) still half asleep and decided that little princess here doesn't like being yelled at after waking, but the session was good for me.

This morning after physio i was given one syringe to be shared in each hip then one in my left arm. I have to remember, left arm morning right arm evening.

Met a great guy, David, whos here making a documentary, his sister Amy (from the USA) who has or had Lymes disease has had reatment here. David is back recording various patients treatments and asked to interview me, and as you all know how shy I am, (not) I took the opportunity to sit with him and share my experience, David will be back in 3 weeks to follow up.

We're just waiting on lunch then heading out for a while with Kevin and Andrew for a coffee, even though I'm not sure if i'm allowed to drink coffee, i have to treat my body as if i'm pregnant, so I'll have to look into it further.

Bye for now :-)

Shop till you drop!

Yesterday ended with a yoga class, oh my gosh, it was so funny, the instructor is ex army and gave instruction like a sargent major, really loud, direct, short and sharp! We all did as we were told for a change, he was a bit scary, I think my sister is the only person i know who has been asked to leave a yoga class and this was no exception, we just couldn't stop laughing, mainly from pain, he was easy on me, i got special treatment!! But we will go back on Friday.

Today began with physio, the same routine as yesterday but she had me walking a bit longer, she called it 'gait' training, i laughed cause i think my bum resembles a double roller door than a gate! I've taught myself bad walking habits so we need to retrain my body, tomorrow i have to put on my AFO's so i stop tripping over my feet, i hate them, but know its necssary for better balance and posture. I had 2 needles this morning, 1 straight into my arm and the other, half injected into each tricep muscle, each day they will focus on different muscle groups.

We had a rest after this then got a taxi to a shopping mall, to get in we had to go through security checks, metal detectors. It was nice to just get out see something different and buy soft toilet paper!

Michelle and Nicki have gone out to a medical supply shop, the bathroom doesnt have hand rails in the shower or near the toilet, i was given a toilet frame on wheels, for my own dignity i wont go into details but lets just say it wasn't pretty. The tiles are bit slippery and one carer fell and broke her leg, so i'm not taking any chances, the girls are looking for something to make life easier for me to be more independent.

The nurse will be in soon with my evening injections. Thank you for adding your comments to my blog, i get very excited to have communication from Team Australia!! Also, Simon if your reading this, the 'team india' towels are brilliant!!

we're on a road to nowhere.....come on inside!

It felt like the day began at sparrows, still feeling bit jetlagged. Went down to physio and was delighted to see Dr Geeta, she is a softly spoken lady, direct in her speech and very compassionate. The physio therapist began working with me, going through every muscle group from my fingers to my toes! Dr Geeta took video of me during this time, then got me up walking along parallel bars a few times, i did about 45 minutes of exercise which was enough. Michelle walked on the treadmill and chatted to Andrew, he's here supporting his friend and offered to show us around, which is great. After physio i had my injection of stem cells and they took blood, now anyone who knows me, knows that i don't part with anything easily and my blood is no different!! Apparently i have small veins and my skin is very sensitive, I felt cool too which doesnt help, the nurse squeezed my arm until it was bright red then tied a band around my wrist, finally they struct gold, with a vein in my hand. I was required to travel to the other hospital for an ECG and an Ecocardio (sumthing, i cant remember the name) It was almost like waiting for a medicare procedure, the hospital was crowded, but cool which was a relief as we were transported in an ambulance, which was a very small van, the seat belts didn't work and the driving was an experience, one hand on the wheel the other on the horn, no such thing as one car one lane, we dodged people, cows and traffic. We waited about an hour, went down a hall to a tiny room, my chair didn't fit through the door, everyone rushes to help me stand up, but they pull in different directions, in the end i have to be firm so that michelle can get me up and in there, she helped me on the bed and the nurse did the first test, then we were told to wait, the dr came about 45 minutes later and did the ultra sound on my heart, so its offical i do have a heart!! I must admit it was a relief to come back to familiar ground and eat lunch (chicken pasta so michelle was in 7th heaven) Looking forward to catching up with the other patients at yoga today, i'm told to be prepared, its not all lovely music and meditation. Must go..Nicki just brought me a cup of tea and a hand full of peanut M & M's..a girls got to keep her strength up!!

Welcome to India

Arrived in Delhi, India Monday evening at approx 8.30pm Local Time, after leaving Perth Sunday Midnight. Spending Monday in Malaysia International Aiport, where we spent the day in the airport hotel sleeping and eating. Well some of us did!!! sleep that is...our accomodation is small but adaquate and we have all we need but i can see that in time we will miss all our creature comforts of home. Getting accustome to our room was quite funny with , nicki furiously ringing the nurses call button and wondering why the light was not coming on, but being impressed by the swift services of the nursing staff!!!everyone has been wonderfully helpful with other patients and carers popping in to say hello. I had physio assessment and a small injection of stem cells to see if i have any negative reaction, one of the Drs will come and see me in 3 hours. I need to be at physio at 9am tomorrow morning, that will be a shock to the system, the physio must have seen the expression on my face and asked 'is that to early!' Nope, no problem :-)