Call Received from Speech Therapist

Lynsey called with an update on previous conversation. She said she had spoken to Dr G about a couple of issues. Dr G had agreed to prescribe Mucodyne (saliva thickener) on Rachael's next prescription. She also said she would try and get liquid forms of all Rachael's drugs, and look into procurring a suction machine. Lynsey said she will give us a further update when she knows more.

Call made to Speech Therapist

Spoke to Lynsey about the best cause of action to take in the event of another choking episode. Lynsey advised that calling the ambulance is the only option to take if it happens again. Lynsey said she would speak to the MND Care Team and arrange a suction machine. Lynsey also said she would get more information on anything that may be helpful eg: reverse heimleich manouvere - pressure on solar plexus. An appointment was made for Lynsey to visit Rachael at home on 29/09/11 at 2pm. Lynsey said there was no first aid course that she was aware of that could help with staff traning issues.

Visit by Occupational Therapist

The OT came and took Rachael's approximate measurements (guessed height and weight).

Choking Episode

Rachael experienced a choking episode after taking her evening drugs. It was exacerbated by bits of dissolved Baclofen in her throat. Rachael found she could not swallow her saliva and kept trying to cough, but was unable to do so. Rachael was choking for 10 minutes, so an ambulance was called. After 20 minutes, an ambulance had still not arrived so was cancelled. The man working was very scared and panicky as was unsure of what he should have done. He rang NHS Direct who called the ambulance.

On the Monday, the MND Specialist Nurse was called who advised me to speak to Rachael's Physiotherapist. She was not in so spoke to another physiotherapist, who said we should speak to Speech Therapist who could advise us of best cause of action to take if Rachael has another episode. She said she would get a message to Lynsey, to get her to call us.

Hydro

Sharon went through full range of motion exercises, focussing especially on Rachael's index finger on her left hand, as it appeared to have become more 'claw-like'. Sharon asked a colleague from the hospital to look at it, who then made a splint to prevent further deterioration and discomfort, as the finger cannot be straightened.

Catheter change at TG Hospital

Rachael attended catheter change appointment a week early (5 weeks). Cuffing was still evident but greatly reduced. The open-ended catheter seemed to have improved the flow as it was less blocked. Another appointment was made for 6 weeks time.

Great North Run 2011

As a birthday gift (!) for the past 4 years, my brother has pushed me round the Great North Run. This year my chair had to incorporate a headrest, leg support and paddling. We still managed a time of 2.43.33 Sam is amazing and the day was awesome. The atmosphere on the run is always inspiring and this year as never before, I was delighted to see whole swathes of deep blue MNDA vests. I met a host of runners raising £££s and awareness of MND and averse as I am to the 'H' word, it gave me hope.
Thanks Sam and all the runners who gave me such a wonderful day