Rajen's story

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Jaspals Voice story picture

Rajen's MND symptoms started in January 2007 at the age of 48yrs but he was diagnosed in January 2008 with Primary Lateral Sclerosis variant. Rajen is an accountant and had his own practice since 1987 but due to the progression of MND had to retire in 2009. Unfortunately his MND had progressed very quickly and by Oct 2008 he had lost his voice and mobility.

He is a very positive person and always smiling and has a very infectious smile. He has a very close group of accountant friends who regularly have a boys night watching cricket or football and world cup together. He loves and regularly attends Bollywood concerts, Mehfils, Football matches (Manchester United supporter) functions at our community, (religious, weddings) visiting friends and relatives, and loves visiting Costco! His MND has not stopped his travelling interest. In 2008 he visited Mombasa in Kenya, 2009 visited Goa, 2011/13 visited Zanzibar & Nairobi and 2014 visited Dubai and enjoys sightseeing.

Rajen totally relies on alternative communications for him to communicate his needs, and participate in conversation. In 2008 the Motor Neurone Association supplied him with a SL35 Lightwriter to augment his speech. In 2010 the SL35 Lightwriter became increasingly difficult to use, as the aid requires typing to spell the message. It was difficult for Rajen to move his arms preventing him spelling his message independently.

In January 2010 Rajen was given a SL86 Scanning Lightwriter on a short term trial from MNDA as he could not move his arms. He could use this equipment to spell out his message using the scanning switch. Initially there were some problems with switch placement, and therefore ongoing review of suitability of seating and positioning was important.

Benefits of using the lightwriter:

  • Allowed Rajen to communicate independently and improved his quality of life
  • Portable allowed to take with him to participate in social situations
  • Friends & family are familiar with Lightwriter (eg stored message functions)
  • Word prediction allowed increased speed for sentence typing.
  • It also enabled him to clarify important care needs with carers, and express his needs in specific situations

After just 3 months Rajen could no longer use the Scanning switches as the illness progressed and the Lightwroter was returned.

In July 2010 the MNDA loaned him a DC10 Eye-gaze system, which Rajen used until December 2014. This equipment was life changing for Rajen as he could communicate independently with his friends, family and also use the internet to google, you tube, skype with his brothers and also type letters, messages etc.

Unfortunately this system was old and not portable. He could only use it on the dining table and he had to be in his wheel chair in order to access it.

From 2011 to 2014 Our speech therapist had approached MNDA, Hillingdon PCT and various other charities, for a portable eye-gaze system for Rajen which could be mounted to his wheelchair and always be accessible to him. Unfortunately they were unable to fund a portable eye-gaze system as it was too expensive.

Rajen's speech therapist, MND nurse at National hospital continued to request a portable eye-gaze for Rajen and finally in July 2014 they managed to get a charitable organisation to loan a much needed Portable C12 Eye-gaze computer to Rajen. We had to pay for the mounting equipment.

This is a computer based system which uses an infra-red beam to track where someone is looking and recognises when their gaze rests on a part of a screen for a specified amount of time. It is backed up with software, it can also be used to access any computer software.

He is still using this system and it has been life changing for him as he can take it out to friends house, on holiday and use internet and can save phrases, sentences and letters.