Laura Frontal Temporal degeneration
Only married for 5 years she'd only just really began her life, now unsure how this disease will progress.
Laura's already suffering from Lupus , Ehlers-Danlos , APS and multiple complications, inc strokes, DVT's and PE's. She desperately needs a break away to help her feel a bit more positive. This dreadful disease has resulted in her losing friends, independence , career prospects , trapped by symptoms of this disease,
She has all of the symptoms of dementia loss of memory, words are aphasiac and she becomes confused and frustrated as people aren't able to understand what she's saying, due to her speech being affected. ( she uses words, which to her sound normal but to others it's meaningless ) she then becomes distressed when she realises that this is happening to her!
I've never ever done this kind of thing before, but it's my daughter, I'll do anything for her. She's my only child, albeit an adult one. I'm bedridden myself,, with a Neurological condition, so unable to help Laura physically, but - with the help of my carers , have been able to set up this campaign as a way to try to help her.
This illness isn't much spoken about, but its effects are devastating. She feels this this way too. So sad to hear her cry to feel so isolated and trapped by this condition. She doesn't ask for much. She did fund raising herself in her youth, ( she was a talented flautist ) for juvenile arthritis, which is now ( in her case ) believed to have been they beginning of the autoimmune diseases she suffers from., but at the time not recognised. No connection made.
As her Mother it causes me much distress to see her suffer so much. We'd love to be able to fulfill her wish to go to the USA ( she'll be 40 in December 2017 ) with her husband, hire a RV to have a trip of a lifetime. Any donation would be so gratefully received.
Laura is kind, gentle , clever and funny, She'd have made a wonderful Mother, but the diseases she suffers from means she's unable to have children, which adds to her sadness. However she tries to be positive, she's always kind to others, and still tries to help them if possible. It'd be wonderful if now this kindness and willingness to help others was now extended to her.
Thank you for reading this, even if you feel unable to contribute it'll help raise awareness that forms of dementia aren't confined to the elderly in society.
38. No medical support-can you believe it!
"Having FTD is sometimes like being in a haunted house type thing, the kind they have at Thorpe Park. You know that sometimes someone is gonna jump out on you, or you’ll hear a noise which will put you on edge. Most of the time it’s just slowly but steadily wandering through the corridors, or maze hoping nothing bad happens! Today, was a something jumped out on me kind of day....awful feelings of paranoia and just feeling unsettled. I had ventured out on my own, no Phil, no dog, just me. Really bad. I don’t think many people appreciate these symptoms of dementia enough...the memory loss, is the most known, but the speech and language issues, and this type of feelings I had today which are just as disturbing and upsetting if not more so. Just wanted to share."
It makes me so angry at times, some people have accused her of 'trying to get a free holiday ' (although that was a while ago that this was said) Laura is a extremely intelligent young woman, who had-and still has, a lot to offer, yet she has to cope with symptoms which none are aware of nor can imagine. Yet, she's striving to still help others in whatever way she can. Fund raising to try to raise awareness and aid research. I'm so proud of her.
Thank you everyone for all the support shown to this campaign. I hope to vlog our trip, and will post updates throughout - hopefully in conjunction with a media outlet, who want to follow us for updates when we go. I am hoping to be able to donate some funds to research into this condition too. Thank you everyone I'm humbled, and eternally grateful x