A grandmother has been told that he only has years to live after his first symptoms of motor neurons (MND) disease were confused with the stress of his divorce.
Diana Keys, 65, began to “fall without reason” and his speech began to deteriorate approximately one year after his 35 -year -old marriage ended in 2019.
The mother now withdrawn, from Clevedon, North Somerset, sought medical advice and tests, but a consultant told her that her symptoms were “functional due to the stress of his divorce.”
Diana was “inflexible”, this was not the case and in May 2023, three years after his symptoms began, he was diagnosed with him.
MND is incurable and causes progressive muscle weakness, and told him that his prognosis was between two and five years.
For Diana, the condition affects her mobility and speech and lets her “struggling” to complete simple tasks such as cooking, carrying a cup of tea and getting his credit card out of his bag.
Diana is “passionate” for raising awareness about the disease, particularly among women, and hopes that their history will encourage others to advocate their health.
“I'm still looking for a sales code for me, but there is no one, so I'm going on,” Diana said.
“Sometimes I can be a half -empty glass person, but, from my diagnosis, I have tried not to knock down other people, I try to be Stoic.
“I try to maintain a sense of humor and tell my blessings, so I have a lot to live.”
MND is a rare condition that progressively damages parts of the nervous system and leads to muscle weakness.
There is no cure, but treatment can control symptoms, which may include rigid or weak hands, weak legs and feet, and contractions, spasms or muscle cramps.
After Diana and her husband “separated” and divorced in 2019, she began to fall, which was “confusing and scary.”
“I fell into the bathroom and hit my head in the shower and, after that it happened two or three times, I contacted the header,” he said.
Diana's GP referred to a consulting neurologist at the local hospital, where she underwent electromyography (EMG), which measures electrical activity in the muscles.
She said the consultant thought her symptoms were only stress after her divorce, but “he knew that this was not the case.”
After then experimenting fasciculation (muscle contraction) and noticing that his voice was deteriorating, pressed to obtain more evidence.
“I've always been a very positive person. I have suffered from depression, so I know how that feels, and the problems I was having were physical,” he said.
In May 2023, three years after their symptoms began, Diana was told that MND had, which was a “great shock.”
She said she was “hysterical” and that her diagnosis was difficult to accept, particularly because the condition is incurable and invariably fatal.
“I remember that the consultant only said:” There is no cure, and the prognosis is between two and five years. “
“I just thought,” My God, that's horrible. “
Reflecting on his divorce, he added: “To be honest, I'm glad I don't have to treat me, with this horrible disease, so I am relieved that I can find happiness elsewhere.”
Diana said they gave information that aimed at the beneficial organization of the MND “incredible” association (MNA) and, while driving home, questioned how he would tell his family and friends “without scaring everyone.”
Symptoms of motor neurons (MND) disease
NHS
The symptoms you can at the beginning include:
- Rigid or weak hands: You can have trouble sustaining or grabbing things
- Weak legs and feet: it is possible that it is difficult to climb stairs, you can stumble with a lot and may find it difficult to lift or move your foot (foot fall)
- Twitches, spasms or muscle cramps (where the muscles tense painfully)
As MND worsens, you can:
- have problems breathing, swallowing and speaking
- produce a lot of saliva (baba)
- have changes in your mood and personality
- be able to walk or move
She said she entered “administrator mode” and continued working as an elementary school administrator until November 2024, since “he needed to feel in control of something.”
“Becoming care, instead of the caregiver, is incredibly difficult … and still wake up every day and I think: 'Come on, you can walk correctly today,' and then I can't,” he said.
“I know I will have to accept this at some point.”
Fortunately, having moved a bungalow shortly after divorce, Diana has not had to make too many alterations in her home.
His garden has been landscaped for accessibility and safety, with the help of the MDA, and is looking to expand the frames of his door to accommodate a wheelchair in the future.
She said that “fatigue is huge”, her voice is dragged and her mobility is “wobbly”, and a simple task such as “bringing a cup of tea to the living room from the kitchen is difficult.”
She said: “I love cooking for the family and having friends for meals, I can't do it now.
“I cannot cut the food correctly and, when as socially, I tend to get things in my throat, which is shameful, so now I have to eat alone.
“Socially, it has been difficult because a lot of effort is needed to speak and walk, all normal things, and I had to cut my hair because I couldn't do it correctly.”
To help deal with her diagnosis, Diana said it was “on a mission to create awareness” and joined several support groups.
She said she had “everything to expect” before her diagnosis, including “adventures” in her caravan, but now she is adapting to a new way of life and wants to help others with MND to feel less alone.
“My progression is relatively slow, so I hope that I can arrive all the time,” he said.
“Once you have a diagnosis, something as traumatic as motor neurons disease is not the end, it is the beginning of a new trip.”
For more information and support, visit the MND association website.
