Monday, December 13, 2010

A Glitch in my Program

So, the side effect was a BIG problem. It just kept getting worse instead of fading and I had to ring Dr Krause and make an appointment to see him. I went last Tuesday but the programmer he had was old and incompatible with my device. He could only turn down the setting with my programmer which was a relief. I felt a bit dumb as I hadn’t thought of doing that myself. Anyway, I also met the physio and I have been put on the waiting list for some rehab.

I went back again on Friday and Dr Krause had a new programmer that worked. The setting he had hoped to use was a no go as my face twitched up on the left side. The setting we settled on is okay but I am still not 100% comfortable. I think I’ll ask him for a new setting next year if things don’t feel better by then.

This device is hard work as it is frustrating to want better but have to settle for mediocre.

- Martha

Monday, November 29, 2010

On Again

I went and had my device switched on(?) again on Thursday. I have a slight side effect on my left side that will slowly fade away. It is not as bad as last time but it is still a pain. They could not tell me if I was on or off in the past 6 months.

They have discovered that people with Cerebral Palsy cannot tolerate vast changes in their device as their GPI goes into shock. So now I have to incrementally put up the setting slowly by 0.1 or 0.2 every week or fortnight. I don’t think I am going to like that very much if I get side effects from it and feel as tired as I do.

Yesterday I tried standing up behind the lounge. It was really hard to do as my body would not respond – I couldn’t get my right (good) leg to move even. It was really scary and frustrating. I was doing better before DBS. I think it has to do with the brain repairing itself after having the device turned on or incremented. In the long run it will be better. I did notice a reduction in twitching though so I guess that’s good.

Anyway, I’ll just have to be patient I think and see what happens next.

- Martha

Sunday, November 21, 2010

Another 3 months are over

I have finished another 3 months of my trial. This three months went very quickly as I had a few other things that kept me busy and that I looked forward to. I was also free of pain and so I wasn’t restricted by it.

Last week I noticed that the place where my device has been implanted doesn’t hurt anymore. It has obviously healed on the inside as well as the outside.

Last Thursday I went and did the 2 ½ hour psychology test which leaves you feeling quite spent in the head. I also said bye to Wanping who I will probably not see again as I don’t think I have anymore psychology tests to do. The following day I backed it up with the video taping and OT & PT consult. I felt very worn out and sore on Friday afternoon.

This Thursday I am seeing Dr Mahant who will turn my device ‘on?’ again I think. I am rather nervous because of the side effect it caused last time but I am hopeful it will be okay.

Then I hope to start rehab soon and see some progress.

- Martha

Sunday, November 14, 2010

Cleaning out the Cupboards

Yesterday I cleaned out my part in the wardrobe which led to cleaning out the kitchen cupboard because I needed a plastic bag from there and it was untidy. Then I had to tidy up the bathroom cupboard because I wanted to put things away in there and when I opened the door I saw it was a bit messy.

Now I know why people don’t tidy up because of the chain reaction cleaning takes on. But I feel less chaotic and at peace because of it.

I am glad I did the cleaning as I have 4 bags of clothes to give away and more room to buy new items.

I love shopping!!

- Martha

Sunday, November 7, 2010


Today I went on a 10km fun run with Peter Slade. Peter pushed all the way, most of the way on the 2 back wheels. We finished it in 1 hour and 5 minutes. Peter was very fast and was pretty buggered at the end I think.

I plan to run it on my feet some day – if not next year, then the year after.

I just finished reading “The Brain that Changes Itself” by Norman Doige. There are a few rehab programs that can teach your brain to work your affected side to behaved better and even teach you to walk. I think that once I have my device set properly rehab will be easier and I think anything is possible!

Tonight on Sunday Night there was a little boy with CP who was running a 4km Run – is that al coincidence or what?

I just need to be patient and take up opportunities.

- Martha

Sunday, October 31, 2010


I have had a problem with feeling really angry lately and I can’t say it’s a nice feeling. It makes me feel very tired and sad. It infiltrates into all my relationships and clouds my day. Anger is a secondary emotion brought about by other emotions such as fear and helplessness.

I have felt helpless about things happening in my life around me especially when I can see that things are not being done properly and that this could lead to more trouble or pain, which then sets the ‘fear’ emotion off.

I keep telling myself that these are other peoples decisions that they will have to live with in the end. They are decisions I cannot persuade. Ultimately God is in control!

- Martha

Monday, October 25, 2010

High Tea

Andrew had his 40th birthday party on Saturday and it was awesome.
We decorated the back veranda with curtains and matching tables and chairs. Kathryn from Tealightful Tea Parties did the rest. She brought the silverware and crockery and also the food and the serving stands. I only had to supply the Champaign and the cake. Everyone had a magical time. Towards the end of the day it rained and we had to pack up in record time as the rain blew in. People still hung around and we cut the cake.

The set up was everything I wanted and I’m glad it was nice for Andrew. I wanted to make it special for him as he is always soo good to me..

I would highly recommend a High Tea Party!

- Martha

Sunday, October 17, 2010

Hair cut

Four and a half months after my operation I finally plucked up enough courage to get my hair cut. It was a very scary experience as I didn’t want the hair dresser to accidently stick the scissors in my head. I happened to scare the hairdresser and so every two minutes she would ask me if I was okay and if I needed a break. To her credit she was really careful and she did a great job. My next hurdle is colouring my hair which is not as scary and I will go back to the same place for that.

There is about five weeks to go before I discover the truth about my device and I will start setting new goals. I am comfortable with where I am at and am in no hurry for things to change. I have a lot happening socially and so I have put my device on the back burner so to speak.

- Martha

Friday, October 1, 2010

The Slow Decline

It has been about 5 weeks since I went for the big appointment and I think I’m definitely off. I have been noticing that I gradually twitching more – I thought I would be more scared but I am not – its almost comfortable.

Since my holiday things have really settled down for me mentally – I am no longer anxious about what is happening. I am more able to take it in my stride and get on with life. All I can really attribute it to is having rested and restored my mind enough so that I think clearer and I am not reacting from an exhausted state.

I have a few exciting things coming up – Andrew’s 40th High Tea and a FunRun! I am looking forward to both of these and I have a few things to prepare before the party so I should be kept busy!

- Martha

Monday, September 20, 2010

To Cocktail Party, or not to Cocktail Party?

As the NMRF Cocktail Party draws near I’ve been wondering if I should attend if I were invited. Because I am still blind to the trial it is not an ideal time to present myself to these people as a ‘success’. And if I don’t go are they going to think that we have failed?

So, I have been invited and the doctor has asked that we not attend this year as the data is still being collected – phew!

He has asked that we be invited next year where the data will have settled and it’ll have been over a year since my operation and my device will have settled.

Things have really settled down in regards to my device. I am no longer so stressed about things as my body is behaving okay now and I am happy to wait until the end of November to know whether I am on or off. What will be, will be!

- Martha

Thursday, September 16, 2010

A Few Bumps

I haven’t written for a while as my life got turned upside down and I needed some time to figure out how to turn it right side up again.

It all started 2nd September when I went for my 3 month check up since having my device put in. All the test went okay until the last part where I had my device turned on or off (still don’t know where I’m at with that???). I felt this strange sensation in my left hand. By the time I got home my left arm and leg were spasming a lot, I was in a lot of pain and I couldn’t do anything for myself. I was in a lot of distress. I saw the doctor again on Monday and whatever he did relieved the stress to a point but it did come back again. I saw the doctor again on Wednesday and he told me that there was nothing he could do for me. I was probably really exhausted and I just needed to go on my holiday, relax and have a drink.

I did just that and day by day I got better. We went to Cairns, which was lovely. We mainly just relaxed by the pool, read (The Lost Symbol by Dan Brown – awesome book!), swam, sunbaked (I have an awesome tan!), shopped (got the best swimmers) and ate!

I am still really tentative as to how stressed I am as I am not 100% healed from the twitching pain but I do feel rejuvenated in spirit!

- Martha

Monday, August 30, 2010


Over the past few days I’ve started to feel restless and ask, “Is what I am doing, what I am supposed to be doing?” I studied to be a Counsellor and I am not using those skills to help people. Although, I do believe I can help people where I am anyway. I am also wondering if I can do more to rehabilitate myself and become more independent. I don’t think I have accomplished much since my operation. I have just become more comfortable. I still need everything done for me that I needed doing before.

I have just finished reading “Lost on Earth” by Steve Crombie and I think this book has really pushed my buttons about where I am at. He chose to travel around the world on a motorbike. I am always talking about travelling to Europe but I don’t seem to go anywhere.

How do I move forward? What next steps can I make?

On Thursday I am going to have a series of tests and then have my device turned ‘off’ or ‘on’. How am I going to cope with this?

I think I am feeling really tired and well overdue for a holiday!

- Martha

Sunday, August 22, 2010

Calm Again

I’ve had a rather calm week where nothing big has come up - which is really good. I have been stressed and exhausted over the past couple of weeks though because on Saturday a cold sore popped up on my face.

I have again found peace in regards to my device. I am comfortable again even if it is induced by pain killers. I still think I am turned on, although perhaps not set to maximum potential. I’ll just have to wait and see.

Andrew and I have booked a holiday to Cairns – really looking forward to it. We haven’t been on a holiday for over a year. I just want to relax in the sun and do nothing, not even read! [Reading has become a big part of my job]

I bumped into our local MP on voting day and he remembered me from a function we attended in October last year. He even recalled that I spoke about DBS – WOW! What a memory. I was very impressed!

- Martha

Monday, August 16, 2010

Change in the Rules

So, I was so looking forward to 2nd September, where I would be told if my device has been ‘on’ or ‘off’ and I could get on with life adjusting it here and there to get it going perfectly for me.



The doctor rang and asked if I would mind going another three months in the trial switched to the opposite. So, if I have been ‘on’, then I would be ‘off’ and vis versa. What!!! The suspense is killing me. My head is blah. I don’t know what is happening to my body and I am soooo confused.

The only consolation is: If it gets too hard for me I can pull out of the trial when I’ve had enough.

Life sure is hard!

- Martha

Sunday, August 8, 2010

Pain Management

On Friday I went to my GP to get a script renewed. While there she caught me unaware by knowing about the pain I was experiencing. She found out about it through a letter she received from my surgeon. My GP would not let the matter drop. She put me on pain medication. I have been a bit hesitant to take anything as I believe that sometimes you can work through pain or learn to live with it. I have started taking it and it has made a world of difference. I am my old self again and I can do anything I want physically without this pain in my neck slowing me down or stopping me.

Another source of pain was being around 4 new babies for the afternoon. My heart was very sore by the end of the time. I felt very inadequate that I couldn’t be part of this ‘baby club’. I am aware that this pain resurfaces every now and then and I know it is a normal feeling. I have now learnt to be kind to myself and focus on the things that make me happy that I do have and this helps me get over my baby blues quicker. A good sleep helps too!

I find out if my device is ‘on’ or ‘off’ on 2nd September after a gruelling 3 lots of appointments that are scheduled all on the same day.

- Martha

Sunday, August 1, 2010


My body has finally settled down again and I am not feeling as much pain. I think it just took me a week and a half to recover from the wedding I went to 2 weeks ago.

I went to see the surgeon last Monday and he felt I needed my device re-adjusted as well. So, I did make an appointment to see the doctor with all the power to adjust my brain and I also asked that he ring me as I had a feeling he wouldn’t want to see me before the 3 months were up. My instincts were right. Even though the surgeon and my neurologist agreed that my device needed tweaking, the tweaker can’t see me until after three months otherwise it will compromise the trial.

The other option was to look at pain management options – I am not one to take lots of medication. I did make an appointment to see my neurologist, but then I cancelled it as the pain reduced. (I think I scared the pain away by threatening to see the doctor – lol!)

Its amazing how our body tells us when we need rest, and we, being intelligent human beings that we are seem to think we know better. When will I ever learn?

Yesterday I had another birthday which was a very special day with my family in my house with the puppies. Since my last birthday I have Pupa and Bronte – two joys in my life!

- Martha

Sunday, July 25, 2010

Re-learning with no expectations!

What a tough week! My muscles have decided they have had enough and don’t want to participate anymore. This has happened just as I’ve decided to get on with life and dive into lots of work.

I am in shock I think??? Is this normal? Was I naive about this operation? How can I help myself?

The benefits are still there if I can see them through the pain that is racking my body. My left arm and leg feel strangled and there is an adrenaline rush coursing through my whole body making it feel like hot liquid sluicing (really wanted to use that word in a sentence) around.

The only thing that makes my body feel okay is if I do nothing. This is not an option as the first paragraph tells you because of the decision I’ve made.

The doctor seems to think I need my device adjusted which I so agree with and I also need to let my muscles re-learn things. This is big! At the age of 36 we normally know our strengths and limitations – now I don’t know anymore! So, wow!

I might as well wipe the slate clean and start again – no expectations!

- Martha

Monday, July 19, 2010

Weekend Away

This weekend Andrew & I attended John’s, Andrew’s brother’s wedding. It was my first time away since my operation. The weekend went very well and a lot of people noticed a change in me which is positive.

We had a family dinner on the Friday night which I was comfortable at. The wedding was on Saturday. I actually sat still in the church and didn’t have any panic moments that I might move too much – it was great! The reception was easy also. I had to leave at 10pm though as I was feeling a lot of fatigue and I started to feel anxious. On Sunday we had breakfast with Uncle Pete, Aunty Viv, James, Jess & Sime. It was fun.

We then came home, had a nap and then went and picked up Pupa and Bronte who had had a big weekend also.

It was great to feel the changes while we were away. The fatigue however, was frustrating. I wonder when that will go away?

- Martha

Sunday, July 11, 2010

Just Relax…

It is nearly 6 weeks since my op and I think I’m feeling quite over myself.
I know I had to be careful so I healed well and I was watching my every move to see if I have improved – which I have, which is nice, but the novelty has worn off.

I want to pretend there is nothing there and get on with it. I am ready to roll up my sleeves and get to work. There are websites to be made, guests to be found for the radio program, books to read, blogs to write, people to have a cuppa with, places to see…

I want to get my focus off myself and go and be with others and do with them. If anyone has any ideas of what I can do for you – please let me know.

- Martha

Wednesday, July 7, 2010


“There are some things success is not, it’s not fame, it’s not money or power.
Success is, waking up in the morning so excited about what you have to do, to literally fly out the door. It’s getting to work with people you love. Success is connecting with the world and making people feel. It’s finding a way to bind together people that have nothing in common but a dream. It’s falling asleep at night knowing you did the best job you could. Success is joy and freedom and friendship. And success is love.” – FAME

I think I am successful. What about you?

Life is full of surprises!

If someone told me two years ago that I would be where I am today medically and fighting to get this op into the Public hospital. I would have said, “In your dreams!”

I am really surprised that the operation and recovery went so smoothly. I honestly thought I would be out of action for some time. Instead I was ready to go again in four days??? There have been a few ups and downs. Having the lesion on my brain that made me instantly better was really frightening. I missed my twitches. Before I got used to the new ‘me’, the improvements disappeared because the lesion healed and I felt sad. Now I have slowly progressed and it is easier to deal with but harder to see the improvements.
The improvements I feel are:
I can sit quieter
I can feed myself easier
I can push myself easier
I can crawl easier (the stairs at fusion don’t take so much out of me).

Life is so different and although it’s exciting, it’s scary. I feel like a baby discovering my hands again. What are these and what can they do for me?

It’s hard being ‘wired up’. About two weeks after my op I thought, ‘What have I done? I have foreign objects in my body.’ I think its going to take a while to be comfortable and confident with them.

It’s hard not knowing what to expect and I am determined to count my blessings and appreciate what I’ve got and not look at what I might get, or what I haven’t got yet. It’s also hard because I do want to strive forward and try and do new things. I still want to walk, even though no one with my disability that has done DBS has walked.

I have no regrets and if nothing changed from this point on I know that I am a lot better off. There is another part of me that doesn’t want to let my doctor down and I also want to give the trial good results. Ultimately it’s not up to me. It’s up to how my brain responds to the device and how my brain re-maps itself. But ultimately it’s up to God and how he wants to use me - I’ve made peace with this. I am just a tool of His - a good place to be.

Fighting to get this op into the Public hospital
Ok, so I hate injustice, especially in the medical field. Working with the TV crew has been great and to know they are taking this cause seriously is wonderful!

What is it with me and people lately? I love them. I keep meeting these amazing people with beautiful hearts. Is it my age? Is it the brain surgery? Is it God? What a privilege. I’ve come to realise that my goal in life is to ‘love’ people and to encourage them. Great gifts everyone deserves!

- Martha

Sunday, July 4, 2010

He Takes Away and Gives

Today at church we were singing a chorus which says ‘you [God] gives and takes away’. Someone stood up and said, actually, ‘God takes away and then gives’.

I was reflecting on this and thought, that is so true. God did take away the probability of motherhood and gave me Deep Brain Stimulation. Wow! The question is: Would I give up Deep Brain Stimulation for motherhood? Absolutely!! But I am happy with what I have been given and I am determined to make the best of it.

I am curious as to where this is all going to lead? Deep Brain Stimulation, Sunday Night… How much more independent will I get? How much of an impact will the Sunday Night show make? Only time will tell…

The saying that one door closes and another door opens is true also because you can’t see a door opening while you are busy/content in a room!

- Martha

Saturday, July 3, 2010

Equity and Fairness

This afternoon I spent the time with the ‘Sunday Night’ crew filming one month after the operation.

I spent some time being interviewed by Dr John and it was amazing to talk about the improvements. How being a lot stiller and quieter has brought about freedom. We also taped me making a sandwich for Sophie (the producer) which Dr John ate half of.

In the interview we spoke about “Equity and Fairness” which is the whole reason why I have agreed to be part of this documentary. I want Deep Brain Stimulation to be available in the public hospital so that all people with Dystonic Cerebral Palsy can access this operation if they choose to do so. It was really nice to know that Dr John is behind this cause and that it will be spoken about so that people will hear about it and change may occur. It is about making the access of this operation equal to everyone so all have a fair go at accessing it.

Australia used to be proud of having everyone equal and that all were equal to receiving treatment that is out there – this has to include medical treatment. I want people to remember that

- Martha

Wednesday, June 30, 2010

Those Aaahhhhaaa Moments

There are times when someone says something to you and it really resonates with you and you feel this person gets you – that feeling is so ahhhha!

I remember when I first went to see my Neurologist there were 2 instances where I thought, ‘He really understands my disability – WOW!’

One comment he made was that, ‘My twitches/spasms are linked to my emotions’. When I heard this, I thought wow (lots of ‘wow’s’ I know), it’s not just my imagination and I can’t control this (although I do try because I don’t always want people to see what I’m thinking – I want to be in control). A time when this is really frustrating is when I am reading a book, the book is emotional, I twitch and loose my page – damn!

The second comment he made was that, ‘I couldn’t possibly balance when I stand up, because my brain was working overtime just to keep my body still and cope with the twitches. It has no time to work on balance’. This comment helped me understand why I chucked in the towel when they were trying to teach me how to walk at school. It was just too hard and you could never progress as my brain had no room for balance while working on twitches. Now that I have done DBS to reduce/remove my twitches I think I do have a chance that I can walk if the twitches reduce enough (although it is worth mentioning that the doctors think this is unlikely and that no other patients with my disability who have done DBS have walked). But I’m more than happy to be the first!

It has been really rare in my life to meet someone, even those in the medical profession, who understand what’s going on with me. I have only figured it out along the way and most of the time I’m explaining it to others so that they have some idea what I am experiencing and trying to manage. It’s nice to every now and then meet someone who just knows!

- Martha

Tuesday, June 29, 2010

First day back…

Today was my first day at work after my operation and it was so nice to see everyone again.

I noticed that things were much easier at work today - pushing myself around, climbing the stairs to get to morning tea and also sitting still during morning tea.

I spend a lot of my time at work talking to people – always great people and great conversation to be had. I love supporting people through struggles and also encouraging them in their victories!

I now know why I work from home! I’ve never been very good at focusing in chaos. I rather contribute to the chaos! I need a quiet, people free zone to get my work done.

I don’t know when I’ll go into work next…

- Martha

Sunday, June 27, 2010


The rest of the week has been good. I did have headaches all week, however, I knew it had more to do with being a woman than to do with my head operation.

I have been progressing along smoothly. I am more relaxed and friends are noticing and commenting that I don’t move so much anymore.

I am discovering what it means to have DBS, how the improvements work and how I am to adapt to all this.

I have discovered that I cannot do anything in my power to ‘help’ my brain get better. There are no exercises you can do or anything like that. The device is just doing its job slowly and then you can only work within the limits of that change.

I am finding it very fascinating to watch and be part of. I am also surprised at my patience with it all. I have just decided to get on with life and celebrate the achievements as they come.

All in all I have found that the BIG brain operation was easier to have and recover from than an infertility cycle. Less pain, less stress, less disappointment. I find this so surprising as while you are dong infertility treatment they want you to get on with life as if what you are doing is ‘no big deal’. Sad really…

- Martha

Tuesday, June 22, 2010

Infection Free

Today I did go and see the doctor and I don’t have an infection – YAY!

What a relief! It is just a wire pulling as I thought and I have been managing that well by massaging the side of my head upwards. I also learnt that the lump I now have in my skull are plugs.

I am so glad I did go and see him as I have my confidence back that I have done all the right things and that I am on the right track.

Today I made Andrew & I toasted sandwiches for lunch all by myself, incident free (I didn’t spasm and chuck anything anywhere) and stress free. It was nice to achieve.

- Martha

Monday, June 21, 2010

Infection & Metal Detectors

I have had some pain in my head for a few days which felt like a wire pulling. It has been really uncomfortable and a bit painful and has made me a bit of a grump. My head and face are sore on the outside too. I sent an email to my neurologist and he wants me to see him in case it is an infection in my skull – noooooo!

I was really proud of the fact that I have healed so well and I have something going on inside. The doctors did tell me that an infection can occur at any time, even years later. I am hoping we have caught it early, if it is an infection and we can get rid of it quick.

Today in the mail I got an ‘Implanted Device Identification’ card saying that I can set off metal detectors even if I’m naked and not sitting in my wheelchair. I’m feeling more and more bionic!

- Martha

Saturday, June 19, 2010


After my operation I returned to my job the day after I came home from hospital.

Why so soon you ask? Because I love my job.

I am currently producing a radio programme. I love finding the guests, writing their bios, reminding them of their upcoming interview and thanking them for being part of the show.

I also look after a team of people that help make it happen – they are an awesome bunch who get their jobs done without much effort on my part. I see my role as a people person, making sure everyone is happy and able to fulfil their commitments.

I never imagined doing this job 6 months ago and I tried to give it up before my operation but I’m hooked.

Do you love what you do? If not, what changes do you have to make?

- Martha

Thursday, June 17, 2010


I just want to acknowledge all those people that have prayed for me, posted Facebook notes, sent me emails, visited, sent cards, telephone calls, SMS’s, flowers and gifts.

You have made my experience of doing this operation very special. I feel that God has been with me looking after me. My speedy recovery has been because of all the care I have been given.

My church family and my Fusion family have worked hard to get me where I am today. I am healing well and I am feeling well. My spirits are really high and although I have had some setback I know its all going to be okay and that the progress will happen when the time is right.

I know that my doctor, Martin Krause, will not read this, but he has also been valuable in patiently answering my 101 questions so that I was at peace and happy with my decision to do this operation and also managing post-op life.

I know I am a truly blessed person who has an amazing support!

- Martha

Tuesday, June 15, 2010

A Back Step

Well I thought I was doing really well. My movements had improved and I was feeling more comfortable. I thought my device was on and that it was working overtime. However, over the last couple of days things have been digressing back to normal which I tried to ignore at first and then pretend it wasn’t happening.

The doctor had warned me that I may have experienced a lesion in my brain which would bring on the positive changes and that it would last a couple of days and I would revert back to ‘my normal’. He said that this would be okay as once the device was on and set properly I would get the same effect as the lesion. I was so very much hoping the doctor was wrong about the lesion, but no, he was right. The other question is whether the device is on or off? I still think its on.

So now I have to be patient and wait for the device to kick in and do its job – if it is on. At least this time I will not be so shocked when it happens and I won’t freak out.

- Martha

It Takes Time

Today I got the (5) stitches out of my chest. I was a quivering mess. My doctor got me to eat lollies while she did it to try and distract me but it didn’t work. I’m really glad it was ONLY 5 stitches. My chest is now free of dressings and will take some time to heal from the sticky stuff that has grazed my skin.

After getting the stitches out, I couldn’t wait to come home have lunch and go for my afternoon nap. I felt exhausted. How can someone get so worked up from having stitches taken out – I can. I think it was worse than having 40 staples taken out of my head. My head is healing up really well and no longer needs dressing either. I think that by Friday week (25/6) I will be all healed up and ready to try some new things.

- Martha

Saturday, June 12, 2010

A New Perspective

Today while I was sitting in church it occurred to me that I was thinking ahead way too much. I was thinking, “Yeah, the progress I’ve made is great, what else is going to happen?“ instead of counting my blessings and acknowledging what has happened already.

My device has been turned on for a week now and I have noticed that I sit quieter, I am able to feed myself easier, my voice is more stable, I am able to get on and off the toilet safer (not so many twitches to deal with), I can hold the telephone easier and I am able to hold a microphone and speak into it. These are all big milestones I have achieved in 7 days and I need to list them and count them as part of the journey.

Someone at church commented that “If this was all the change that happened it would be enough.” They are sooo right! I am so grateful that I got to do this operation. I want to really enjoy the journey and the new perspective.

- Martha

Wednesday, June 9, 2010

It's only been a week

It has only been a week since my operation, my sister keeps telling me. It actually feels like so much longer. Today I am going to have a CT Scan under sedation and so I will be groggy for a couple of days. I think it feels longer because of all the milestones. Out of ICU, wires/tubes taken out, device programmed and turned on, out of bed and home! I so want to hurry up and get on with it.

I have been waking up full of energy, then by 11am I am ready for a lie down. Somewhere in there we have lunch (except not today because I have to fast) then more resting until 4pm. I then get up, check fb, have dinner and have visitors. It all works well.

I have decided to wait until I have all staples and stitches out before I start attempting ‘new tricks’ – drinking from a glass, etc. I need to not have much pain if possible.

Monday, June 7, 2010

The Operation

So my operation has been done and I feel that the recovery has been very quick. I don’t have any issues with my arm or shoulder and so I am able to get around as normal.

The device has been turned ON as I can feel the changes. I am a lot calmer and the small twitches have pretty much stopped. I still have my big ones and I can’t tell when they are coming. I am able to feed myself so comfortably. Its almost like an out of body experience.

Yesterday I think I had a bit of a meltdown about it as I am scared to try new things and/but I don’t want to waste the potential of this gift of new life. I emailed my doctor about it and he told me my feelings are all normal and will settle down.

My dad then offered to work with me on using a glass to drink and I am realy happy that I can do that with him.

So I have finished climbing another mountain (the operation) for now and I am heading down the other side (recovery), which may have its own little mountains.

- Martha

Friday, May 28, 2010


The last 2 days have been completely hectic for me. I think I actually saw it coming.

Yesterday it was communicated to me that a programme on Channel Seven, ‘Sunday Night’ wants to run a story on me to do with the DBS trial I am part of.

I have had to send lots of information to the Producer as well as some photos which I had to go to my parents to get.

Today I had a massive appointment at the hospital where I was videotaped doing things I can’t do. On top of that, the television crew were there filming it. I then had to do an MEP which sends pulses from your brain to your body – OUCH!!

I have lots of socialising this weekend! I have another hospital visit on Monday then I am meeting with the television crew again on Tuesday, Wednesday and Friday. I am off to hospital on Thursday and my operation is on Friday.

I am excited that the television crew have picked up the story. It is an important one to tell and I hope that I can get my message across – that this operation is not financially feasible for those on a Disability Support Pension and that it needs to be available in the public hospital. The monthly Health Fund payments that need to be paid for a year are too great for those on a pension and the extra costs are hard to fund as well. I am hoping to convey the necessity for this to be publicly funded.

- Martha

Wednesday, May 26, 2010

Laying on a Li-Lo

Do you ever feel like just escaping from life and just lying on a Li-lo in a pool drifting around relaxed, with the sun shining and a soft breeze to keep you cool?

I have had this vision for about 6 months now. I so want to do it. The vision started in summer and although I was not terribly busy I never got around to doing it.

Today the vision resurfaced. It is a cold, miserable, rainy day and the last thing you would want to do is lay on a Li-lo in the pool.

I think there may be another reason why the vision keeps appearing. I think it may be about wanting to escape the pressures and hecticness of life.

I also wonder if I had everything lined up to lay on the Li-lo, whether I would in fact do it and for how long? How long would it take to settle down and shed the busyness? Would I persevere until I got there or would I give up, or would I get more wound up trying to relax? Maybe I’m scared to try because of failure?

I keep telling myself that when I’m finished this or that task that I will put a relaxation time into my day, but instead I find another task to do. I’m scared that I don’t know how to relax and switch my mind off.

If only I could see the reward in relaxing?

- Martha

Tuesday, May 25, 2010

Pupa & Bronte

We have two beautiful puppies. Pupa is 10 months old and Bronte is 4 months old. They have brought a lot of love, joy, laughter and happiness into our lives.

I had been thinking about getting a dog for about 5 years but I didn’t know what breed to get. I looked after my friend’s dog for the weekend. He is a King Charles Cavalier. He suited us perfectly. My mum was telling a lady who had a female Cavalier x Maltese puppy for sale. We went to see her and fell in love with her instantly. Pupa means Beautiful Doll. Pupa is patient and understanding and knowing and is very laid back. She is an inside dog and sleeps with us in bed.

Bronte came along 6 months later. She is Pupa’s full sister. They have the same colouring in different places. Bronte is very determined and knows what she wants and gets it! She is also mischievous. She too wormed her way into our bed within the first week of her arrival.

Pupa is a very good sister to Bronte and is very protective.

These two puppies have filled up our house and our hearts. Our devotion and love for them is 100%. We get to be parents to them and love them. We have made much space in our lives for them. Space we were saving up for our children.

I am amazed at how much I love having them around me all the time. They do tire me but the rewards are greater.

When I come home Pupa jumps on my lap and gives me kisses. I then sidle up to a lounge and Bronts jumps on to my lap for her turn.

I use to think treating dogs like babies was silly, until I got my own. I can’t believe how I keep doing things I swore I’d never do. You can never judge until you are in that situation.

- Martha

Monday, May 24, 2010

From Wanting a Baby to Brain Surgery

Okay, so in 11 days I am having my operation and I am pondering how it all happened. How did I come to this point in my life? It was definitely a set of events that occurred one after the other and it probably started with my wanting to have a baby.

At the age of 30 my biological clock was booming. I wanted a baby. I did some research, followed the direction and……nothing.

After a while I knew something was wrong. I went to see a doctor who tested both of us and the results were a BIG HUMUNGOUS (life changing) shock! We were told the only way we would conceive a child was through infertility treatment. It sounded like a piece of cake but it wasn’t.

The more cycles I did, the more depressed I got. My GP was not supportive and so after 15 year with this GP I went and sought a new one. My new GP is my ‘angel’. She wanted to make me feel better and be more comfortable. After getting me on the right anti-depressant medication she suggested I go see a Neurologist for my disability. Dr Woods was lovely – I saw him twice and by the second visit he had researched who to send me to next. A Dr Krause who was new to Australia from Germany. He was leading a trial at the hospital 5 minutes away from home on my disability. Is this not fate??

So here I am 11 days away from an operation that could remove my twitches and free me up to be more independent.

My questions are: Is this a path that God had laid out for me to travel? It feels like it. I have not sought out any of this. It has just fallen in my lap.
Do we all have a path to walk set for us? Do we get to choose much at all? I know that trying to have a baby was all wrong because of the struggle it was. I was trying to lay a new path (I am not a road worker obviously).

I do have a niggle of, What if this is another disappointment? But I am at peace about it now so I will keep going with it. Obviously right now I am on the right path.

- Martha

Saturday, May 22, 2010


I have been doing a lot of reflecting lately and I know where this has come from. In thirteen days I am having a big operation. They are operating on my brain. Although this is a relatively ‘safe’ operation, there are parts of me that thinks ‘what if’? So, to prepare I have written letters to my loved ones remembering the good times we have had, what they mean to me and thanking them for this and that. It’s been a nice walk down memory lane.

I have also been thinking about how my life has been shaped by people, movies and books.

The movie ‘Dead Poets Society’ came out when I was struggling in Year 11. I was miserable and started questioning if I had to ‘conform’ and finish high school or if there was another way. Thoreau’s quote, "…and not, when I came to die, discover that I had not lived.", started my journey of wanting to ‘taste’ life and not to just go through the motions in a numb state until death. I want this for others also. I don’t want people to live no life or part of a life because they have to, for example, stay in a job they don’t like to pay the bills. Life is more precious than money.

There have also been a handful of people who have believed in me and my abilities and bolstered me up so that I could achieve more.

My teachers at my Special School sent me to Public School so I could feed my brain. My Primary School teacher promised I wouldn’t be in the ‘dummies’ class in High School and I wasn’t. One High School teacher told me I could do anything I set my mind to. One boss believed I could do the big jobs he gave me and never second guessed me. He supported, respected, breathed a sigh of relief that the job was in capable hands and let me soar. All these people built bricks of belief for me but the capstones were put on by my boss who gave me self belief and self respect and took away the feeling of needing to prove myself to others. I now know what I’m made of and what I’m capable of.

One of my favourite books “Sophie's World” by Jostein Gaarder also had an impact on my life. Gaarder’s quote, 'Wisest is she who knows she does not know.', has always kept me grounded. To know that you know, not much at all, keeps you alert to new insights and ways of doing things. I like sharing life with people who are open to new ideas and I am happy to be taught a thing or two. To be closed to this and think you know everything cheats you out of so much.

- Martha

Friday, May 21, 2010


Hi, this is my first blog and although I am eager to fill some space with my meaderings I am fearful of writing too little or not having anything to write about at all.

I have started writing this in a word document and hopefully I can just copy and paste it into my blog when I am finished and happy with it.

I have decided to call my blog ‘The Climber’ as I see life’s journey as a climb and the song ‘The Climb’ by Miley Cyrus has been resonating within me today.

I have seen many mountains and have wanted to make them move. I have also gone out searching for them and decided to climb some. I don’t think I’ve ever been alone but at times I have felt alone.

Reflecting back, my life has been interesting – happy, sad, easy and hard. But I have tried not to give up because I have always been, interested about what’s on the other side of that mountain, not wanting to miss out on anything.

Looking forward I have an impending mountain coming and I am hoping the other side is full of big dreams. I imagine falls, cuts, bruises and bumps along the way, as well as laughs and maybe one or two ‘free rides’.

I hope you enjoy reading about some of the story so far as well as future hopes and dreams I may share about!

- Martha