The following are a few excerpts from a personal blog by Professor Letizia Foroni (Imperial College, London).
April 1st 2010
Today, Nick was discharged from hospital.What the future has in reserve for us, I don’t know, but we must try and enjoy the day (though still full of anxieties for the future). …BUT to keep him on his toes, we have booked already a two days residential rehabilitation training course with an instructor from ARNI (Action for Rehabilitation from Neurological Injuriy) on April 22-23rd where he will have a 1 to 1 training for 5-6 hrs per day to practise how to improve his mobility, walking, transfer etc. We have been promised by ARNI that Nick may walk without a stick in the future. I just want him to walk, no matter if he is going to use 1 or 2 sticks.!
April 23rd, 2010
Miracles happen! Nick walked with no stick for the past 2 days!
Tom, his trainer, took away the stick from his hand 3 minutes after we arrived yesterday morning at 11 am and Nick was not allowed to use it for nearly 95% of the time we spent with him. He made him walk across a gravel entrance and go down three steps when we arrived. This was the easy part of the day! He made Nick get up from a normal chair about 60 times or until Nick could master the procedure without almost thinking about it today! We were both absolutely physically and mentally exhausted last night but we left the place today at 5 pm so exhilarated by the experience that I am still floating in mid air tonight! Nick has not used the stick since we arrived home at 7pm tonight and although he tends to lean on furniture and bookcases etc when walking around, 50% of the time he is trying to walk with no support at all. We found someone who believed that Nick could do it… and Nick did it!
After Dianne (our Mrs Bean!), Tom Balchin (the founder of ARNI, Action for the Rehabilitation from Neurological Injury) is the second angel sent to us to help with Nick’s recovery. He said to Nick: “Nick you will be walking in 1 year or less”! And Nick was smiling as I have not seen him smiling for months! I think he felt inspired by finding someone that believes in his ability and empowered him to control his future. You need to know that Tom at the age of 21 in 1997 suffered a stroke due to an aneurism on his right side of the brain. He had surgery and has an L shape scar on his head to prove it; he was left paralysed on the L side and despite this he has recovered almost 99% of his moto-neuro-activity on his left side. Because of this, Nick and he were comparing notes about the use of Sodium valproate to control seizures, how best to control the lack of function of the right foot (for Nick) or left foot (for Tom) and many other common problems and deficits. The common problems, seeing that Tom made it, the way Tom was understanding Nick’s problems made it so much easier for Nick to find the required motivation and keep trying harder and harder.
So, for once the results were better than the expectations! Tom had prepared a much easier day and challengingonly for Nick’s upper body. Again, I witnessed Nick moving the right arm as he had not done in the previous 10 months. Yes, by the way, April 20th was our 10th anniversary. But Tom said yesterday:” Nick you are a ‘young stroke sufferer’ and you has really great chances to achieve a lot. But this is a life commitment, and as long as you make it fun, you will enjoy!’ My contribution was “Nick this is like skiing, the better you get the easier it will become! So let’s get the skis on and face the mountain, it is sunny and the sky is blue! And as with real skiing I will be coming down with you all the way!” Funny, for the first time in 10 months I think of facing the mountain going down rather than going up!!
April 24th 2010
MANY thanks for spending the last two days with us! We are over the moon with what Nick has achieved and really inspired by the fact that we have found a person that believes that Nick CAN MAKE IT! This is what we neded. At present Nick has not used the stick at all since we arrived home tonight at 7pm! and he has been going to and from the bedroom already three times. He only used the stick to walk from the car to the front door because the 2 hrs driving (M25 was the usual chaos!) had left him with a lot of disconfort on the R leg having to keep it in one position for a long time. So, I am determined to continue the hard work going…..thanks for showing the way and believing Nick could do it, it was what we both needed.
April 25th 2010
just to tell you that Nick has not used the stick (only once) since coming home and the wheelchair has been relegated to the conservatory. We are now sitting on an office chair intead like the one you have. He also is enjoying the ankle support we got from you which is not that difficult to put on (not more than the stockings for DVT anyway) and Nick feels more ‘normal’ with that.
I wrote to Peter asking to establish a contact to discuss plans,
May 8th 2010
his personal trainer (Peter) was starting to work with him. Peter arrived in the afternoon and has started setting up a number of exercises to do with Nick that will aim at him regaining balance and mobility. He is coming twice a week and has already sent a schedule to follow daily with him in bed and off the bed.
May 15th 2010
Peter and Nick are really doing well and Peter has struck a good balance between challenges and making Nick feel safe. Yesterday Nick walked 10 steps up and down the stairs and then walked outside the house to the corner of our street, not probably more than 40-50 metres but a progress, I followed with the wheelchair in case Nick felt tired but we didn’t need it at all. Peter is also not as soft as one thinks, and Nick has little margin for diverging, if he does not follow instructions Peter threatens Nick with taking him back … and do 10 more steps! but he is also very encouraging and keeps telling Nick how good are his chances to do well.
May 23rd 2010
We visited the Northwick Park hospital last Tuesday and everyone was so happy to see Nick and for him to look so well, as well. He showed them how he can now walk with a single stick and how the ankle-support is so much easier to wear and allows him to wear normal shoes and feel more ‘human and normal’. Nick has continues to climb the stairs with both Dianne and Peter. Does not yet feel confident enough to do that with me, but I am not taking that personally. On Friday we set up the Wii platform and Nick stepped onto it and managed to control his position and balance without holding onto his stick and that was great! Every time Peter comes he steps up the target and Nick is very … tired at the end of it, but also VERY pleased with himself. When I am here, I video him and then we can watch the video which is helpful for him.
June 7th, 2010
Just few words as an update of our last 7 days. Pretty quiet last week and in fact I was getting worried that we may have been approaching a plateau. Of course I was wrong, again. Nick has achieved another first in three new targets in the past week. He walked even further than ever before from the sitting room to Grange rd which is approximately 100 mt away from our house and which is really almost 1/2 way to the pub now! This happened last Friday in a 290C temperature and Nick thought it was really a challenge.
June 14th 2010
Nick’s right side is still a major problem and his leg in particular. It seems to have improved somehow but very slowly but it remains a major limitation to his indipendence and ability to move freely. I feel we should push the exercises as much as possible but at the same time I feel I don’t want to alienate him from what should be pleasant experience. It is difficult to strike the balance.
July 2nd 2010
In the past two weeks Nick has continued to cheer me up with how different his right side of the body is feeling. It is becoming /feeling more and more as part of his body and a new sensation is that he is now feeling its weight. He describes it like when following an injection for a dental extraction, your side of the face is returning to ‘life’! His entire right side is going through a similar experience. This continues to amuse him and provides a nice and cheerful topic of discussion while we walk around the house or having dinner. I have filmed him the other day describing these feelings and also trying to push his wheel chair using the right hand. This also proves that his shoulder is getting better and acquiring a wider range of movements. He has also now being ‘upstairs’ in our house at least 5 times and he remains dismayed by how chaotic the study looks. ‘One more reason for you to come and help me to clear it up’…is my comment.
July 20th 2010
Hi,
Just a brief update: no major news but ‘no news, good news’. Nick’s strength in terms of muscle power is no doubt increasing albeit very slowly. Nick is also becoming more adventurous. Last week he decided to go upstairs in our house to check if the windows were closed. This was while he was at home alone for 30 min between Dianne leaving and me coming home. He was quite adamant that he needed to make sure that the windows were closed! This has always been one of his concerns before his stroke and I am pleased to see that it still is!!!
We have a new assessment with his PI trainer, Tom Balchin from ARNI on August 4th and both Nick and I are anxious but excited about this. It changed Nick’s approach to his recovery and no doubt it will be a new boost of energy and inspiration!
August 4th 2010
Hi,
today we met with Tom from ARNI, who has been leading Nick’s recovery through a new rehabilitation programme in conjunction with Peter, Nick’s trainer (who in turns is trained by Tom).
Tom was impressed by the progress Nick has made in the past 3 months, mainly the improvement of Nick’s speech and his ability to perform tasks with his right hand. Some of these activities could not even be evaluated at our last visit (on April 22nd) because Nick could NOT carry them out and therefore there was no score. Today Nick scored top for each of them.
Unfortunately Nick’s right foot decided to ‘go on strike’ and refused to hold on a position that could allow Nick to walk. This is a very rare situation which occasionally happened before when Nick is particularly tired or ‘worried and emotional’. It is the ‘weakest link’ in his body and responds with a ‘mind of its own’ when under pressure. Neither Tom nor I were particularly worried. To confirm our feelings, Nick was walking with no stick and with a perfectly positioned foot tonight when we came home! A bit annoying, but such is life! Otherwise, the day went well and we are both looking forwards to a good night sleep as we are both tired (Nick physically and me emotionally).
August 5th 2010
Hi Letizia
Can I insert a note into the next bulletin to say how impressed I am at Nick’s progress? If this will alter the nature of the blog, just keep it to yourself as a note from me;)
When you both came to see me in April, Nick basically did not speak. Today, it was hard to hold him back… and I realised that it was like meeting a new person..as we were conversing without prompts from Letizia. His drop-foot was an anomoly, so I’m not worried about regression- Peter and I had a long talk tonight about the training and I’m happy things are going very well.we also talked about new strategies for encouraging fine motor movements in the fingers and increasing the ability of grasp/release. One of my other trainee instructors was also at training, and he gave Nick a very useful weighted squeezy ball – and Nick almost immediately did better with his reach, passing the ball round his lower and upper back without dropping it. Fantastic work and you should both be really proud of yourselves. Next time, it’s no stick, or you’ll ‘get some stick’ from me! Only kidding!! I would also like to say that Letizia makes the very best pasta… and I’m very grateful to her for taking over lunch-making duties from me, as my abilities do NOT extend into the kitchen!
All the best,
Tom
