Hope everyone negotiated the festive period as best they could - emotionally Christmas Day is a tough one for me. Probably like many others I reflect back to happy memories - my son loved his Christmas Day eating marathon!
This is my first post on son’s own profile for a full year. He has had the inevitable chest/urine infections but these have been managed well by the care home medical team. He now has 2 hand splints & 1 elbow to try and improve his range. Upcoming appointment this week to be seen by Consultant from Newcastle RVI to assess him for possible tendon release surgery on his affected areas, 🤞he is suitable. He continues to engage and benefit from physio therapy with stretching, pedal bike exercises etc - objective to maintain range and possibly improve slightly.
Son is now being taken to any social activities as appropriate by staff if I am not there - unfortunately my son’s rehabilitation unit was often forgotten about in this area - discussed in family meetings and now being addressed. I have found you do need to be a constant advocate in so many areas whether it be issues within the care home, hospital appointments, medical staff, benefits, legal proceedings (NHS negligence case ongoing) - diary & notebooks are always in my bag.
The journey continues and we will keep battling to ensure our son is given every option available to him.
Best wishes Nanapal x
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Nanapal
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I think significant points in life like Christmas tend to give us pause because we can still hold the memory of life prior to brain injury. I'm glad for your wins this year Nanapal and I hope the consultants appointment goes well this week. Advocacy though sadly necessary, is draining, and I hope you are able to care for yourself as well.
With regards to the healthcare system, I've often found the same thing. Good doctors are hit and miss in every specialty, like every profession I suppose, but I don't think it's good enough for something so critical to life. It certainly made things exponentially difficult for me when I was battling these issues on my own, without the support of family and friends.
Yes, it's very important to keep a diary of people and events. At times I was thinking if it was just me being irrational. But no, a lot of my experiences were sub-par to say the least.
Well done for being such a good mum and strong advocate for your son! He will no doubt be grateful in the years to come for all that you've done for him. It's good to hear he enjoyed Christmas and the things that made him happy.
One of the most helpful points I find with this forum is comments come from both sides carers such as myself & those living with brain injuries. It is always good to hear of others experiences & how they process everything.
Something I & fellow member Dogsabighelp often say is how frightening & difficult it must be for those who don’t have any support or person to be their advocate.
Hello my friend, lovely to hear from you and see your boy is continuing to go from strength to strength, with his mums help. Hope you are doing well to Nan, got to look after number one, first, because who is there when you arent. I’ve not been on much but do go on and read the messages and reply when I think necessary, but have been worried where you have been. I wish you and yours lots of best wishes, lots of love for the new year, stay safe love Alice xx
You started your caring journey about the time as me. My husband had his severe TBI in September 2020. I remember reading your earlier posts although I never made contact with you. I also have had to struggle and still do about about everything related to my husband’s care. He is at home with 24 hour care but it has taken a toll on me. Still we shall struggle on in 2025. Best wishes to you and your friend with a dog!
best wishes for the new year nanapal your son and the rest of your family and friends .. keep fighting as you are right as without this type of fight we would be very lost Sue x
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