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