Imelda McHugh was diagnosed with Multiple System Atrophy (MSA) in 2021, a rare, progressive disease affecting the central and autonomic nervous systems, which control movement and involuntary functions.

She said:

I was originally diagnosed with Parkinson’s after experiencing issues with my right hand. It felt clumsy and I couldn’t control it fully, I then developed a tremor so was referred to Neurology to investigate.

After a while on medication, my symptoms weren’t improving so other conditions were explored and that’s when I got my MSA diagnosis.

It’s a “Parkinsonian disease”, with similar symptoms but is more aggressive with limited to no treatment or medication. I say it’s Parkinson’s on steroids.

Imelda also has a form of arthritis, affecting her mobility. She continued:

Thankfully I’m not at the stage where I’m in constant pain from my MSA, but having these symptoms alongside arthritis does affect my mobility quite a bit which can then cause pain.

Imelda has been seeing a Parkinson’s nurse in Coventry since her diagnosis to help with her symptoms. The nurse mentioned our Patient & Carer Wellbeing Service and how it could benefit her. She added:

When the nurse mentioned Myton and palliative care, I was initially frightened by what that might mean. She explained the difference between palliative end of life care and palliative wellbeing care.

She reassured me that, while my illness is terminal, I’m not in the final months or weeks of life. Instead, the focus is on maintaining my current health so I can make the most of the time I have left. With that understanding, I agreed to the referral.

Imelda started receiving weekly calls from our Wellbeing Team in 2024, signposting her to services to further help her and her family. Imelda continued:

I must admit I was still dubious when I first started talking to Jill, my Myton Wellbeing Nurse, but with each phone call my worries disappeared. She referred me to Myton’s Complementary Therapy service which was a dream. I had a massage on my arms, shoulders and neck. Oh it was heaven!

Jill also informed me of all the support groups I could attend to meet likeminded individuals in similar situations. I was also made aware of the carers support group which I knew nothing about.

My youngest daughter is 21, she has autism and lives at home with me and her dad. To have a place dedicated for them as my family is incredible. They’re able to talk to other carers and family members, share their experiences and maybe get a few helpful tips. With my daughter’s autism, she’s very reliant on us.

My partner is 15 years older than me and my only fear for the future is how she will cope when her parents aren’t here anymore. But she thrives at Myton, she’s a whole new person, opening up to people in a way she never has. She is so comfortable at Myton and I think that is the biggest reflection of the environment they create.”

After six months of attending these sessions, Imelda was admitted to our Warwick Myton Hospice in early January 2025 for a week of Respite care. Imelda commented:

I couldn’t wait to give my partner a break. He does so much for me and our youngest daughter so to have this week dedicated to giving him, as well as me, a break is all I could ask for. They’ve planned to go away for a few days whilst I’m here which is something they just wouldn’t be able to do with me at home. I’m also getting the very best care and a bit of a pamper here too.

Since the minute I arrived, I’ve felt so relaxed and like I’m able to breath again. When Myton was first mentioned, I wrongly assumed hospice care was just for those at the very end of their life and I fully associated Myton with death. But I was so wrong. Being here has opened my eyes to the different, and main, side of hospice care.

It’s so refreshing how the doctors and nurses have the time to get you know me, understand where my frustrations lie with my condition, and work together to make it easier for me. My first night here, the doctor and consultant spent so long chatting with me about my symptoms and medication – it’s something I’ve never experienced before! Myton is truly magical.

Our Patient & Carer Wellbeing Service is available to any adult who has active, progressive disease for which the prognosis is limited. The adult has to be aged 18+ and registered with a Coventry or Warwickshire GP.

We can support you if you are living with, or caring for someone with, a life limiting illness who needs specialist support, information, guidance, help planning for the future, or who just needs a coffee and a chat.

We aim to be alongside you for as long as you need.

For more information on Wellbeing visit here!

Our Respite Care is available free of charge at Warwick Myton Hospice for people aged 18 and over living with a life limiting illness who wish to give their unpaid carers or families a break.

Providing an opportunity for a planned stay of one week, with a maximum of two weeks per year, you need to be registered with a GP in Coventry and Warwickshire and being cared for by family or friends at home.

For more information on Respite visit here!