Recent content by Rachel

Dear Ang So sorry to hear of your dear husband's passing. It sounds like he was a wonderful man who will be missed by all. He couldn't have wished for a better carer and I'm sure you both cherished the time you had together. Take great care of yourself over the coming months. I lost my dear...

I would echo what Anne has said. My mum had Bulbar Palsy and first said that her tongue felt too big in her mouth. Then she started slurring her words, sounding like a deaf person. From memory, swallowing became a problem after her speech was affected and she would choke easily if she didn't...

My mum started having strange dreams last summer (about 6m after diagnosed). She was quite disturbed by them as in the dreams she seemed to be one of a handful of people left on the Earth and the World was about to End! She would wake up fequently in the night and then go back to sleep just to...

My mum also had progressive bulbar & whilst she could open her mouth it certainly became very restricted, although she never got to the point where she couldn't open her mouth at all. One other symptom she had which I haven't read about or seen anywhere was that in her final months her lower...

Yawning was one of the first symptoms my mum experienced a long time before she was diagnosed with PBP. The only way she could stop this happening was to chew on gum, but obviously that becane dangerous as the pbp progressed. At the time we didn't know why she was yawning so much but once...

So sorry to hear about your dad Jacqueline. He is now free from suffering and at peace. Take great care of yourself over the coming weeks & months. God Bless.

What a truly beautiful poem Susan. I lost my mum 2 months ago and the first 2 verses really ring true. Thank you for putting into words what many Cals who have lost their dearest ones are feeling.

Hi Jed Welcome to the Forum. I too am relatively new & joined just before my mum passed from bulbar MND in November 2007 (Diagnosed Jan 2007). I know how you feel in that it is only a month or so afterwards that it all sinks in, especially now that Christmas is over and we are into the New...

My mum started with tongue problems, she said it felt too big in her mouth, & this was in 2004. Progressed to slurring and excessive yawning. By 2006 it was quite difficult to understand her and she was having trouble swallowing & choking very easily. Dx bulbar onset in Jan 2007 and passed away...

Hi Rene My mum used a Nintendo Ds to play puzzle games such as sudoku, polariumn brain training. There are lots of games for the Ds that aren't "gaming games". You could also use a laptop & buy or download puzzle games for that which may be easier to use. Good luck! Rachel

Hi Barbie. So sorry you have to be here at all but you will find a lot of support on this forum so you have come to the right place. My mum was diagnosed in Jan 07 with bulbar palsy and sadly died on 12th November. I have an 11 year old son and so had to make the difficult decision as to how...

Hi Amanda Great news about the communication device, it should make life much easier for you and your dad. My mum used her lightwriter as her voice for the last 6 months of her life and my only gripe was (no offence!) it had an american accent :-D Only problem was, my mum's spelling wasn't too...

So sorry to hear of your loss Mary Helen. I lost my mum last month and I too can remember times when patience ran thin - she lost her speech in June and towards the end it became very hard to understand what she wanted at times, even with the lightwriter. I'm sure your dad is looking down on...

So sorry to hear about your mom. I know the hurt you are feeling (lost my mum on 12th Nov) and you are in my thoughts & prayers. She has gone to a better place and is no longer suffering.

I am no doctor but in my experience of PBP (my mum was finally diagnosed in January this year) the facial weakness does not come & go. In the early stages the doctors thought my mum had had a series of mini strokes but as the weakness in her tongue & mouth got progressively worse with no...