25-07-2015, 23:42
26-07-2015, 07:07
Really sorry for your loss, condolences to you and your family.
I was with our Mum when she died as well.
I was with our Mum when she died as well.
26-07-2015, 07:20
I know when my sister died, I never got to say goodbye to her properly (which was in September 1987), there is always that part of me that wishes I could have done so, but that I have to say one page of my book of life that I can't turn back to....and done differently.
We all will have to go through these difficult moments in life and I'm sure both your mum and father in law are now at peace. Condolences to all in your family, and friends mate.
We all will have to go through these difficult moments in life and I'm sure both your mum and father in law are now at peace. Condolences to all in your family, and friends mate.
26-07-2015, 10:34
(25-07-2015 23:27 )Forum Style Wrote: [ -> ]Unfortunately, since I made that post back in September 2014, they have both died. My father-in-law 3 months ago and my Mum this morning. The truly sad part is that I was so tired and stressed this morning that I couldn't talk to her at her bedside, to say goodbye to her and thank her for giving me life, so I just held her hand as she slipped away. Difficult times.
I'm so sorry to hear of your loss mate, that is truly heartbreaking. She would have felt the love you had for her without saying it.
26-07-2015, 11:19
Dont feel bad mate, she is looking down at you and smiling.
26-07-2015, 12:09
My sincere condolences
26-07-2015, 13:45
Oh man, sincere condolences on what remains a very challenging time for you 
(25-07-2015 23:27 )Forum Style Wrote: [ -> ]so I just held her hand as she slipped away.Don't underestimate the value of this, mate. You were there, words or no words.
31-07-2015, 23:46
Thanks to anyone who posted or sent me a PM. My Mum's funeral is on Wednesday.
I also received the results of my follow-up MRI scan today, one-year on from the previous one. It says that the results are the same as the previous one [no new intracerebral lesions, no change in the size of the cyst and the brain and ventricles appear normal.] And the EMG/NCV test I had in Edinburgh still rules out other more sinister causes. In other words, they still don't know what's causing it and, without a conclusive diagnosis, they're just going to wait and see how it progresses over the next 3-6 months. Not the news I wanted tbh.
I also received the results of my follow-up MRI scan today, one-year on from the previous one. It says that the results are the same as the previous one [no new intracerebral lesions, no change in the size of the cyst and the brain and ventricles appear normal.] And the EMG/NCV test I had in Edinburgh still rules out other more sinister causes. In other words, they still don't know what's causing it and, without a conclusive diagnosis, they're just going to wait and see how it progresses over the next 3-6 months. Not the news I wanted tbh.
28-08-2015, 03:42
Saw my speech therapist today. Apparently my condition is called dysarthria [speech difficulties] including dysphagia [swallowing difficulties] although they don't know the root cause of the neurological injury yet. I'm going to have an appointment at some point where they film me eating food, using a thermal-imaging camera so you can actually see the food going down and how my body copes with it. The speech therapist got me to drink some water, which I choked on and spat out [not a proud moment for me!] but it seems to be a problem with timing, which would be consistent with some motor function issues I've been having recently. As well as the fact that I've lost my sense of rhythm, which for a former professional musician is pretty depressing. No news on my next neurology appointment yet. Until then, more blood tests and speech therapy. #HappyHappyJoyJoy
10-10-2015, 03:22
Had my fluoroscopy test on Thursday morning, where they filmed me eating and drinking with an x-ray camera. The therapist said that droplets of liquid are left in my throat when I drink because, much like my speech issue, I'm swallowing too slowly and the neurological problem won't allow me to swallow faster. If these droplets stay in my throat, they will drip into my lungs where they will rot and cause a chest infection, maybe even pneumonia. The only solution is to put a thickening powder into all my drinks [including water] to make them as thick as the consistency of double-cream, so my throat has enough time to process them properly. I also have to tuck my chin down when I swallow, take smaller mouthfuls and drink from a special cup - like a fucking baby.
I'll be honest, I'll try the powder but if it's as gross as it sounds then I won't bother. I'll just leave my drinks as they are and take my chances staying healthy. Let's face it - if the extra 10-20 years of life it gives me are ones where all the drinks are as thick as milkshakes and I talk this stupidly then I won't be missing much. Good riddance to bad rubbish tbh.
I'll be honest, I'll try the powder but if it's as gross as it sounds then I won't bother. I'll just leave my drinks as they are and take my chances staying healthy. Let's face it - if the extra 10-20 years of life it gives me are ones where all the drinks are as thick as milkshakes and I talk this stupidly then I won't be missing much. Good riddance to bad rubbish tbh.