Remote Control

My remote control

Went back for a follow-up appointment with my consultant last week who has now enabled me to make minor voltage adjustments using my remote control. The past month has had its ups and downs, but my new reduced medication regime is finally stabilising after a bit of trial and error – taking a little and often seems to work best for me. Having the remote control will now let me to find the balance between stimulation and medication without needing to go back to hospital as often.

Crank up the Volume

The last few weeks have been something of a rollercoaster ride. Some days have been really good while others have seen the return of the on/off periods that have blighted the last few years. However, that, apparently, is only to be expected. As my brain recovers from the trauma of having a couple of wires poked into it, the conductivity decreases and therefore the voltage applied to each electrode needs to be increased in order to continue to deliver the same benefit. I have been back once when the voltages were increased to 1.2 and 1.9 V on the right and left sides respectively still for 60 microseconds at 130Hz. These settings have gradually reduced in effectiveness and I am going back in to hospital on Friday for adjustment.

I am also having regular physiotherapy to sort out my posture – a career in IT, rowing and Parkinson’s is not a great combination.

I really would like to say thanks to all those people who read this blog, emailed me, sent cards and visited me – without your support I am sure that I would have been able to recover so quickly.

Going Home

Yippeeee!!!! I just found out that I am going home tomorrow.

I get my stitches out at 1:30pm, then at last I can wash my hair after nearly three weeks,
before heading home.

Can’t wait!

No Sleep ’til Hammersmith

I think I would have had more sleep at a Motörhead concert than I had on the ward last night.

One of the other patients was shouting and ringing the bell for the nurses all night. Eventually they stopped coming which just made him shout even more. I tried to get into the Patients’ Day Room to sleep there but some of the nurses were sleeping in there and had locked the door from the inside. Eventually they emerged at 6am and I was finally able to lay a mattress on the floor and get an hour’s sleep.

They were supposed to put me in a hotel tonight, but apparently were unable to book a room – so I am braced for a repeat performance.

I must point out that this is completely atypical of the care that I have received while in here, which has been excellent.

No more skydiving

Normally I am not one for reading manuals, but I am going to make an exception with my neurostimulator and especially the remote control unit.

The first manual is a list of dos and donts, to avoid accidentally switching off the device, including:

• No diving
• No parachuting
• Don’t go through airport security detectors
• No welding
• Don’t carry my mobile phone in the left breast pocket of my jacket or a shirt pocket.

Also, the theft detectors in shops may also affect it, so I’ll have to carry my remote control with me whenever I go out.

A small price to pay, really.

That Stimulated Feeling

I have had my Medtronic Activa PC neurostimulator
turned on for almost two days now and already feel much better.

Each electrode contains four separate contacts and it requires a process of trial and error to determine which pair to use. Some combinations produced a number of unwelcome side-effects ranging from tingling to being unable to speak!

Already, my doctors have managed to stop one of my drugs
completely and halve the dose of another. Now comes a period of
fine-tuning the balance of medication v stimulation which may take

up to six months.

The Grand Switch-on

The second operation went well, and after a poor night’s sleep, I spent most of yesterday sleeping.

Well today’s the big day – my newly implanted neurostimulator will be switched on today for the first time.

Second Op Today

Off for my second operation this morning to insert the stimuator battery pack.

Some Stimulating Conversation

Spent a fascinating day doing research yesterday.

First up was a project to investigate the response of PD patients to startling noises. Once again I was wired into a recording device and asked to squeeze a force meter every time a light went on while random loud noises were played ino my headphones.

Then it was time for the big moment – the first stimulation of my electrodes. People with Parkinson’s Disease seem to have a band of regular activity around 20Hz in the basal ganglia. It is possible that this is sending the body a message not to move. When the stimulation is applied it is thought that this regular activity is disrupted. Here is what the electrical activity inside my brain looks like with the 20Hz “drumbeat” appearing in the yellow area on the chart).

The output from my electrodes

The results were quite encouraging – even at low voltages the stiffness in my arms disappeared.

Bananagrams

Apologies for not posting yesterday, but a) not much happened and b) I am incredibly tired and spent much of the day asleep.

I suspect that today will follow a similar routine. I can hear the breakfast trolley coming ever closer and am hoping to wangle a cooked breakfast today. Then I get to choose lunch and dinner. The menu is extensive and varied but I seem to confine my choices to all-day brunch, cod in parsley sauce, mash and peas or roast chicken plus trimmings followed by, you guessed it, jam sponge and custard.

Then after a shower, I’ll settle down for the day, reading – I am about two-thirds of the way through Stuart MacBride’s new novel “Shatter the Bones” – playing Bananagrams and sleeping.

Am due to be stimulated for the first time tomorrow as part of a reseacrch project I am participating in.