Today’s agenda was an assessment with the occupational therapist Hortensia Gimeno (Clinical specialist Paediatric Occupational Therapist), and Wioleta Kowalski (Therapy Assistant)
The session today involved Robbie writing his name, copying a sentence written before him, and writing his age down, along with a timed alphabet writing exercise. After this Robbie was put through various exercises including drawing shapes, copy shapes, join lines (dot to dots), reading and writing timed exercises, throughout the tests Robbie was filmed in order to record his current ability, this will act as a benchmark for future post op stimulator tuning and assessments.
After the handwritten work, Robbie was given some physical assessment, and was timed walking a distance, turning around and sitting down, then up again, turn around walk back and sit again a few times. Robbie was also put through a 6 minute walk test, where he was taken to a quiet corridor, and two cones were placed 30 meters apart, and Robbie simply had to walk back and forward between the cones for the 6 minutes whilst being filmed, from the front, side and back.
As Robbie still had a cannula in his arm from yesterdays PET scan, and they didn’t want to remove this as Robbie had an MRI scheduled for the afternoon today Hortentia couldn’t do all of the tests today, she will pick up these outstanding assessments in the morning.
We had a really good experience today where we got to meet a young lady who suffers from Dystonia, I will not name her for obvious reasons, she told us how she experienced difficulties with movement from the age of 3, and spent years travelling back and forward to several hospitals before eventually being referred to Dr Lin. She explained how the symptoms had first affected her, and how they had progressed over the years, and to be honest her case sounded very, very similar to what Robbie is going through. She explained she had underwent the DBS implant in Feb 2010, and how it had made a major transformation to her life, and really helped her symptoms. We got the chance to discuss several questions we had in relation to the procedure with someone who has actually experienced it, we could ask about was it painful, what after effects were there, has it helped make her life better, how often the battery needs charged, how she felt about the implant etc etc etc… It was truly an amazing experience, she was a truly wonderful person for agreeing to talk to us and it helped us immensely. She even explained about how she can now bring her sister to follow up appointments, rather than take her parents that way they can go shopping… Seeing someone in the flesh who has had the op makes the world of difference. To this young lady I would like to say a million thanks, this real example has made the choice much easier to make for our Robbie, she was a real inspiration to my Wife and I.
Early afternoon Robbie went off for his MRI, again similar to yesterday he was very drowsy when he first came round from this, however quickly came around again, he is being released from the ward tonight to spend the night at Gassiot House, so the hard bit is now finally over for the time being with the last two days looking at further therapy (Physio and Phsycological) assessments, and a goal setting exercise tomorrow afternoon. Friday is looking at further assessments and a meeting with the Surgeon who will perform the operation...
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