Lets Get Claire To Bollywood!!

She doesn’t want to star in a movie…
...but she would like to dance again!
Please come along and support Claire’s fundraising
efforts to continue stem cell treatment in India.
***Every child receives a FREE Goodie Bag***
Currently there is no treatment in Australia for muscular dystrophy. Without further treatment, Claire’s muscles will continue to deteriorate making independent living impossible for herself and her daughter. In India, Dr Geeta Shroff has used embryonic stem cells to treat patients living with muscular dystrophy. These patients have shown signs of stabilisation and over time have increased muscle strength.
Date: Sunday 17th May
Place: Burswood Park Golf Course in the Riverside Room
Roger MacKay Drive, Burswood
Time: 2.00 pm – 6.00 pm
Cost: Adult $30, Child $10, Family (2 adults 2 children) $70, Concession $25 Children under 3 are free!

To purchase tickets please contact Claire on 0416 199 745 or claire@lifeforcecoaching.com.au
Proudly supported by HOPE Outreach Charity
This is a FAMILY EVENT, so come and enjoy a great afternoon where
you can have fun and raise money for this excellent cause.
Entertainment…Jumping Castle…Door Prizes…Face Painting…Sausage Sizzle…Spot Prizes…Silent Auction...PLUS MUCH MORE!

Ticket price includes food and all entertainment – drinks can be purchased at the venue (no eftpos facilities)

Adjustment to home life

I can't believe I've been home now almost 4 months. The adjustment home has been a challenging one for me. The moment i hit Perth soil i ached to return to India, to my safety, my routine, my treatment and my fight for a better quality of life. It was lovely to see family, friends and especially my daughter Sabine, but underneath my heart was still in Delhi. Because of this, i became bit depressed leading up to Christmas and made some unhealthy choices for myself. I was lucky enough to meet a lady (Diana) who helped me with physiotherapy twice per week for a while, which was great. I tried linking into the public system but they don't work one on one with clients and i wasn't able to join a class. Eventually i decided to work with a physiotherapist near home and that has worked out fantastic. We meet twice a week for 1 hour. In between I practice my walking and do the exercises i can manage. My body has stabilized so far and I'm making slow progress. I have to keep reminding myself that its taken me 22 years to get where i am physically its not going to change back in 6 months! But for those of you who know and love me and who i have driven nuts about wanting 'more' well...you've just got to suck it up and live through it with me!!! The end result of unnecessary stress the last few months and resulted in me getting 'shingles' this week, I've been sore and itchy but more determined to keep my life simple and focused on my goal.
Which leads me to my next big thing, returning to Delhi. Unfortunately money is not going to fall on me from a great height, so I need to start fundraising and this week (I'm making this statement public so you can all hold me accountable!) I'm going to start looking for a venue to hold an event and hold a silent auction too, so if anyone has something of interest they can donate for auction I would be very grateful.
Next time i write, it will be with details of an event......!

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