Latest news with #ProgressiveSupranuclearPalsy
Yahoo
13-06-2025
- Health
- Yahoo
My dad is living with a rare neurological disease — here's how I'm navigating Father's Day in the midst of grief
My dad was diagnosed with Progressive Supranuclear Palsy. Here's how it has affected our lives. (Photos via Melina Brum) When your relationship with your dad has been reshaped by illness or loss, Father's Day can hit differently. The day is advertised as joyful, filled with backyard BBQs and picture-perfect moments, with an unspoken implication that everyone's dad is healthy, present or alive. At least, that's how it feels when you're someone who's hurting. The truth is, for many, the day highlights a sense of loss. It can bring up emotions of grief, love and everything in between. If you're feeling something along those lines, you're not alone. Father's Day can be heavy, and that's fair to acknowledge. There was a time when it meant searching for the perfect tool or tie — a small token to show my love. Now, I'd give anything just for him to be OK. Two and a half years ago, my dad was officially diagnosed with a late-onset neurodegenerative disease, Progressive Supranuclear Palsy (PSP). I say "officially" because there's no way to determine when it all started. Advertisement You can never really pinpoint the beginning, and you only begin to understand it as it progresses. This is why people are usually diagnosed in the thick of it. And that's exactly what happened to my father, Victor Brum, when he was 63. My dad was the type to constantly be outdoors, riding his bike, maintaining his garden and doing all the handyman things around the house. Over the years, we've slowly watched him become a shell of himself, unable to do even the simplest of tasks he once did with ease. This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle. Around 2019, my dad began showing symptoms of depression and anxiety. As a family, we did everything we could to support him, hoping he'd get better — therapy, walks, medication, you name it. But as time went on, we began to notice other changes. My dad in 2019 versus my dad in 2025. (Photos via Melina Brum) He started to isolate himself, which was very out of character for him. He began saying his body felt like an "old man," and at first, we thought it was just the weight of his mental health issues slowing him down. Advertisement But then, we noticed something else. His right hand started doing something strange — he always held it across his chest, raised and stiff. He complained about it often, but his doctor dismissed it as arthritis. As the years went on, the changes became harder to ignore. Uncles and cousins started to ask, "Hey, is Uncle Vic OK? His speech seems a bit off — he's kind of slurring his words." He began losing his balance unexpectedly, which was off-putting and strange. I can still hear my brother urging him to go to the doctor, convinced he may have suffered a stroke. In 2022, it took a hard fall down the stairs (backwards, might I add), a cracked skull, broken ribs and a hospital visit to push the diagnosis along. A diagnosis that came only after we had seen him slip through so many different phases of confusion and frustration. Once we found out, it was a hard road to acceptance for all — which we're still on. What is Progressive Supranuclear Palsy? The name of the disease is pretty intense, and you can only imagine what went through our minds when we heard the news (something along the lines of "What the hell is that?"). It's a rare neurological disease that progresses and gets worse over time — and it's just as horrible as it sounds. Advertisement It's part of a category of diseases called Atypical Parkinsonian Disorders (sometimes referred to as Parkinson's Plus). It's caused by the progressive death of nerve cells in certain areas of the brain, all thanks to the overproduction of a nasty little protein called "tau," which damages the cells. What are the symptoms of Progressive Supranuclear Palsy? The disease is extremely hard to identify and often gets misdiagnosed as Parkinson's disease, a stroke or depression — all of which we thought my dad might've suffered from — due to overlapping symptoms. It can take years to get the right diagnosis, which only adds to the frustration of it all. Here's a list of the main symptoms that can help decipher PSP from other contenders: Progressive loss of balance Backward falls Vision issues Cognitive changes Difficulty swallowing Speech changes Decreased facial expressions The main thing I've learned about PSP is that it affects each individual in a unique manner. Symptoms and progression can look very different for everyone, which makes it more unpredictable and even harder to know what to expect. Coping with the diagnosis Life has been extremely challenging since the diagnosis. When we first found out, we cried, panicked and cried some more. So many questions ran through our heads like, "What caused this?" and "Why did this have to happen to us?" To this day, these thoughts continue to race through my mind. Advertisement Fast forward from when we found out to today: My dad is now living in a long-term care facility, because, unfortunately, he needs a lot more care than we can provide him with. The rollercoaster of emotions we've been riding since 2022 include anger, sadness, grief, despair and guilt — just to name a few. My dad before and after his Progressive Supranuclear Palsy diagnosis. (Photos via Melina Brum) The feeling of not knowing, of watching him change without fully understanding why, has been one of the hardest things we've had to bear. I wish someone would have told me this when he first got diagnosed. But it's also why I'm sharing this now — to spread awareness, and to help others who might be going through something similar. At this stage of his journey, he's pretty much wheelchair-bound and very stiff, with slurred speech and a tendency to choke. He has his good days and his bad days — he's a trooper, and I commend him for his strength. He's still my strong daddio, after all. Want to share your experience with a life-changing diagnosis? Contact us at and you could be featured in an upcoming Yahoo Canada article. Dealing with ambiguous loss Since my dad's diagnosis, ambiguous loss has been a major part of my life. Ambiguous loss, according to the Mayo Clinic, is "a person's profound sense of loss and sadness that is not associated with a death of a loved one." Advertisement There are different types of ambiguous loss: type 1 and type 2. Type 1 deals with a physical loss that you're unsure of, like disappearances, kidnappings and natural disasters. It can also come from loss of contact, like divorce or adoption. Type 2 refers to a psychological loss: when a loved one is present but has changed — like Alzheimer's disease and forms of dementia. This is what my family and I have been dealing with, and is exactly what I mean when I say we watched my dad become a shell of himself. Of course, I acknowledge he is physically here, and for that, I am grateful each day. However, it's been an immense change. First and foremost, the diagnosis affects my father. But for the people around him, that's another kind of excruciating pain that looms over us day in and day out. Over the past couple of years, I've been on a treacherous journey of coming to terms with the fact that who he was, with all of his abilities and the person I'm used to, is no longer present. The contrast between what was and what is no longer is so deafeningly loud most days. And that's led to anticipatory grief. Progressive Supranuclear Palsy is a life-altering illness. (Photo via Melina Brum) What is anticipatory grief? We have all or will experience grief — but sometimes, you can feel it months or years before it even happens. That's anticipatory grief. Conventional grief is something experienced after a loss, but with certain impending situations, you can feel it beforehand. Advertisement When people are faced with a terminal illness or an incurable disease, it's normal to go through the feelings and emotions of grief in advance. I've been victim to many overwhelming emotions, ranging from gut-wrenching sadness to uncontainable irritability. I've lost sleep, my appetite and concentration over the thought of what my wedding might look like without my dad walking me down the aisle or him not being there to meet my future children. I know we don't have control over these things, but when you're faced with something so matter-of-fact, it's hard not to start grieving what you thought your life would look like. When you're a little girl, you think your daddy is going to be there until he's very old and grey — you don't imagine being 29 and visiting him in an old age home. How my family is coping My days are very unpredictable. Some moments are better than others, but I never know when a really tough one will sneak up on me. It's definitely been a learning process — one that keeps evolving. What helps me? Some days, not much. But I do tend to look through old photos, videos and text messages all the time, and while that might sound torturous, I find it healing. It reminds me of how grateful I am for all the memories, regardless of what we're going through now. It also gives me a moment to shift my perspective, to reflect on how quickly this disease progresses and to remind myself not to take anything for granted. Advertisement My mom is the best caregiver out there — her patience and strength are unmatched. It's one of the hardest jobs in life, and it takes a toll mentally and physically. Watching her give everything she has to my dad while still trying to take care of herself has been both heartbreaking and inspiring. As a family, we've had to adapt in ways we never imagined. Each day has become a new lesson in patience, resilience and finding strength. My mom and I during a PSP awareness walk. (Photo via Melina Brum) One thing I've come to realize throughout this journey is that it's crucial to take care of yourself, too. If you put yourself on the back burner (which is easy to do), it's impossible to show up for your loved ones. Some small ways to recharge include moments of quiet reflection, time spent with friends and family, leaning on each other for support and self-care, which looks different for everyone. I hope our story offers even a sliver of the comfort we so desperately needed during our own journey. With that, I will share that while not much can help my dad's disease, some products have helped provide relief. In the beginning, we would've loved to have a guide of things needed to help navigate this illness. So, if you're a caregiver experiencing a similar situation, I'd love to share some assistance products that can lend a helping hand. If you want to learn more about Progressive Supranuclear Palsy or find support in your personal journey, you can head to CurePSP for more information. To donate to the cause and help raise awareness, you can support CurePSP's mission here. Anything helps. For pain relief: For bathroom assistance: For transportation assistance: For eating assistance: For sleep safety: More accessibility items: Self-care subscriptions, therapy, books & journals: Let us know what you think by emailing us, commenting below and tweeting @YahooStyleCA! Follow us on Twitter and Instagram.
Yahoo
12-06-2025
- Health
- Yahoo
My dad is living with a rare neurological disease — here's how I'm navigating Father's Day in the midst of grief
When your relationship with your dad has been reshaped by illness or loss, Father's Day can hit differently. The day is advertised as joyful, filled with backyard BBQs and picture-perfect moments, with an unspoken implication that everyone's dad is healthy, present or alive. At least, that's how it feels when you're someone who's hurting. The truth is, for many, the day highlights a sense of loss. It can bring up emotions of grief, love and everything in between. If you're feeling something along those lines, you're not alone. Father's Day can be heavy, and that's fair to acknowledge. There was a time when it meant searching for the perfect tool or tie — a small token to show my love. Now, I'd give anything just for him to be OK. Two and a half years ago, my dad was officially diagnosed with a late-onset neurodegenerative disease, Progressive Supranuclear Palsy (PSP). I say "officially" because there's no way to determine when it all started. You can never really pinpoint the beginning, and you only begin to understand it as it progresses. This is why people are usually diagnosed in the thick of it. And that's exactly what happened to my father, Victor Brum, when he was 63. My dad was the type to constantly be outdoors, riding his bike, maintaining his garden and doing all the handyman things around the house. Over the years, we've slowly watched him become a shell of himself, unable to do even the simplest of tasks he once did with ease. This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle. Around 2019, my dad began showing symptoms of depression and anxiety. As a family, we did everything we could to support him, hoping he'd get better — therapy, walks, medication, you name it. But as time went on, we began to notice other changes. He started to isolate himself, which was very out of character for him. He began saying his body felt like an "old man," and at first, we thought it was just the weight of his mental health issues slowing him down. But then, we noticed something else. His right hand started doing something strange — he always held it across his chest, raised and stiff. He complained about it often, but his doctor dismissed it as arthritis. As the years went on, the changes became harder to ignore. Uncles and cousins started to ask, "Hey, is Uncle Vic OK? His speech seems a bit off — he's kind of slurring his words." He began losing his balance unexpectedly, which was off-putting and strange. I can still hear my brother urging him to go to the doctor, convinced he may have suffered a stroke. In 2022, it took a hard fall down the stairs (backwards, might I add), a cracked skull, broken ribs and a hospital visit to push the diagnosis along. A diagnosis that came only after we had seen him slip through so many different phases of confusion and frustration. Once we found out, it was a hard road to acceptance for all — which we're still on. The name of the disease is pretty intense, and you can only imagine what went through our minds when we heard the news (something along the lines of "What the hell is that?"). It's a rare neurological disease that progresses and gets worse over time — and it's just as horrible as it sounds. It's part of a category of diseases called Atypical Parkinsonian Disorders (sometimes referred to as Parkinson's Plus). It's caused by the progressive death of nerve cells in certain areas of the brain, all thanks to the overproduction of a nasty little protein called "tau," which damages the cells. The disease is extremely hard to identify and often gets misdiagnosed as Parkinson's disease, a stroke or depression — all of which we thought my dad might've suffered from — due to overlapping symptoms. It can take years to get the right diagnosis, which only adds to the frustration of it all. Here's a list of the main symptoms that can help decipher PSP from other contenders: Progressive loss of balance Backward falls Vision issues Cognitive changes Difficulty swallowing Speech changes Decreased facial expressions The main thing I've learned about PSP is that it affects each individual in a unique manner. Symptoms and progression can look very different for everyone, which makes it more unpredictable and even harder to know what to expect. Life has been extremely challenging since the diagnosis. When we first found out, we cried, panicked and cried some more. So many questions ran through our heads like, "What caused this?" and "Why did this have to happen to us?" To this day, these thoughts continue to race through my mind. Fast forward from when we found out to today: My dad is now living in a long-term care facility, because, unfortunately, he needs a lot more care than we can provide him with. The rollercoaster of emotions we've been riding since 2022 include anger, sadness, grief, despair and guilt — just to name a few. The feeling of not knowing, of watching him change without fully understanding why, has been one of the hardest things we've had to bear. I wish someone would have told me this when he first got diagnosed. But it's also why I'm sharing this now — to spread awareness, and to help others who might be going through something similar. At this stage of his journey, he's pretty much wheelchair-bound and very stiff, with slurred speech and a tendency to choke. He has his good days and his bad days — he's a trooper, and I commend him for his strength. He's still my strong daddio, after my dad's diagnosis, ambiguous loss has been a major part of my life. Ambiguous loss, according to the Mayo Clinic, is "a person's profound sense of loss and sadness that is not associated with a death of a loved one." There are different types of ambiguous loss: type 1 and type 2. Type 1 deals with a physical loss that you're unsure of, like disappearances, kidnappings and natural disasters. It can also come from loss of contact, like divorce or adoption. Type 2 refers to a psychological loss: when a loved one is present but has changed — like Alzheimer's disease and forms of dementia. This is what my family and I have been dealing with, and is exactly what I mean when I say we watched my dad become a shell of himself. Of course, I acknowledge he is physically here, and for that, I am grateful each day. However, it's been an immense change. First and foremost, the diagnosis affects my father. But for the people around him, that's another kind of excruciating pain that looms over us day in and day out. Over the past couple of years, I've been on a treacherous journey of coming to terms with the fact that who he was, with all of his abilities and the person I'm used to, is no longer present. The contrast between what was and what is no longer is so deafeningly loud most days. And that's led to anticipatory grief. We have all or will experience grief — but sometimes, you can feel it months or years before it even happens. That's anticipatory grief. Conventional grief is something experienced after a loss, but with certain impending situations, you can feel it beforehand. When people are faced with a terminal illness or an incurable disease, it's normal to go through the feelings and emotions of grief in advance. I've been victim to many overwhelming emotions, ranging from gut-wrenching sadness to uncontainable irritability. I've lost sleep, my appetite and concentration over the thought of what my wedding might look like without my dad walking me down the aisle or him not being there to meet my future children. I know we don't have control over these things, but when you're faced with something so matter-of-fact, it's hard not to start grieving what you thought your life would look like. When you're a little girl, you think your daddy is going to be there until he's very old and grey — you don't imagine being 29 and visiting him in an old age home. My days are very unpredictable. Some moments are better than others, but I never know when a really tough one will sneak up on me. It's definitely been a learning process — one that keeps evolving. What helps me? Some days, not much. But I do tend to look through old photos, videos and text messages all the time, and while that might sound torturous, I find it healing. It reminds me of how grateful I am for all the memories, regardless of what we're going through now. It also gives me a moment to shift my perspective, to reflect on how quickly this disease progresses and to remind myself not to take anything for granted. My mom is the best caregiver out there — her patience and strength are unmatched. It's one of the hardest jobs in life, and it takes a toll mentally and physically. Watching her give everything she has to my dad while still trying to take care of herself has been both heartbreaking and inspiring. As a family, we've had to adapt in ways we never imagined. Each day has become a new lesson in patience, resilience and finding strength. One thing I've come to realize throughout this journey is that it's crucial to take care of yourself, too. If you put yourself on the back burner (which is easy to do), it's impossible to show up for your loved ones. Some small ways to recharge include moments of quiet reflection, time spent with friends and family, leaning on each other for support and self-care, which looks different for everyone. I hope our story offers even a sliver of the comfort we so desperately needed during our own journey. With that, I will share that while not much can help my dad's disease, some products have helped provide relief. In the beginning, we would've loved to have a guide of things needed to help navigate this illness. So, if you're a caregiver experiencing a similar situation, I'd love to share some assistance products that can lend a helping Tissue Percussion Massager Electric Heating Pad Magnesium Oil Spray with MSM CB2 Hemp Cream: Extra Strength Pain Relief Cream Toilet Support Rail Portable Urinal for Men Smart Bidet Toilet Seat Shower Suction Cup Grab Bars Deluxe Aluminum Shower Bench Positioning Bed Pad with Handles Single Axle Blue Streak Wheelchair Four Wheel Rollator with Fold Up Removable Back Support Gait Belt: Anti-Slip Transfer Aid Adaptive Utensils (Right-Handed) 8 oz Nosey Cup Foldable Food Tray Table Bib with Crumb Catcher Bed Rails VTech Digital Audio Monitor Owlet Cam: Video and Audio Monitor 360 Degree Swivel Seat Cushion Pill Crusher and Grinder Anti-Slip Non-Skid Crew Socks Skechers Men's Equalizer: Slip-on Shoe Headspace Subscription BetterHelp therapy How to Carry What Can't Be Fixed: A Journal for Grief Loss Trauma and Resilience Hardcover Soulbroken: A Guidebook for Your Journey Through Ambiguous Grief Expected Loss: Coping with Anticipatory Grief The Grief Deck: Rituals, Meditations, and Tools for Moving through Loss It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand
News18
09-06-2025
- General
- News18
80-Year-Old Ex-Architect Now Bags Groceries To Pay Off Debt
Last Updated: An 80-year-old man from Utah began working at the grocery store in December 2020, just six months after his wife passed away from dementia. Gary Saling, an 80-year-old man from Utah, is back working as a grocery bagger to help pay for his late wife's medical bills. People who visit Smith's Market in St. George often see him working hard. Gary first did a similar job during his high school days in California but never thought he might do it again at this age, as most of his life was spent working as an architect. Gary and his late wife, Carol, met after noticing each other at a stoplight in 1991. It turned out they used to visit the same store for years but never crossed paths. Even the store staff had wished for their union because they thought the two looked perfect match. According to the New York Post, Saling began working at the grocery store in December 2020, just six months after his wife Carol passed away. She was suffering from two types of dementia, including a rare and fast-spreading one called Progressive Supranuclear Palsy. Despite her serious health problems, the man chose to care for her at home. He did his best, but looking after her came at a high cost. Over time, the total expenses for her care and other medical needs went up to $80,000 (approximately Rs 68 Lakh). Gary Saling said, 'I promised myself, God, her, her brother, her son and daughter, (her stepsons), I promised them I would not put her in a nursing home. I'd keep her at home and I kept it. I paid it all, that's why I'm broke." Saling and Carol met in a very sweet and unexpected way. One day in 1990, when she was driving near a park, she saw Gary walking nearby. They started talking while sitting on a park bench and their chat went on for over three hours. That one meeting turned into something special. Within a year, they were engaged and then got married. Both of them had children from earlier relationships, but once their kids grew up, they decided to start fresh. They moved from California to Montana and later settled in Utah. To help clear the medical bills, Saling decided to do a job that wouldn't be mentally tiring. After spending years working as an architect, he wanted something simple. So, he chose to become a grocery bagger, a job that also let him meet people and make new friends in his community. One of the people he became friends with was Duana Johnson. After learning about his story, she started a fundraiser to support him. The response was amazing, as nearly $40,000 (approximately Rs 34 Lakh) has been collected. Johnson said, 'It's awesome to see that because it shows there's a lot of compassion and love in our country that a lot of people are speaking against. A lot of people are saying it's not that way, but I'm seeing the opposite. Gary told me that Carol was very faithful, she loved the Lord. I just feel like her prayers for him as she was leaving this earth are being answered. She loved him so much." Gary Saling was touched by the kindness of people. When some people called him a hero or even compared him to an angel or saint, Saling didn't agree. He said he was just doing what he had promised. From the day his wife Carol was diagnosed, he cared for her at home until her last moments. First Published:
New York Post
08-06-2025
- Business
- New York Post
Retired architect, 80, forced to bag groceries as med bills, promise to dying wife leave him broke
A former big shot architect was forced to bag groceries after mounting medical bills and a promise he made to his dying wife left him broke. Utah resident Gary Saling, 80, has spent years working four days a week at Smith's Market in St. George – though a well-deserved retirement might be on the horizon thanks to the generosity of others. The senior citizen started the job in December 2020 about six months after the death of his wife, Carol, from two forms of dementia – including the rare, aggressive Progressive Supranuclear Palsy. Advertisement 3 Saling has been working as a bagger for years. FOX His spouse, who was an artist, suffered for about three and a half years, but he was always by her side. 'I promised myself, God, her, her brother, her son and daughter, (her stepsons), I promised them I would not put her in a nursing home,' Saling told The Post on Sunday. 'I'd keep her at home and I kept it.' Advertisement The devotion led to skyrocketing at-home care costs, which totaled $80,000 including other medical bills that two faced over the years. 'I paid it all, that's why I'm broke,' he said, noting about $40,000 was from the at-home care. The California native, who was a grocery bagger as a teenager growing up, was a talented architect for decades, working on multi-millionaire mansions for big-name clients including Jeffries Investment Group founder Boyd Jefferies in Laguna Beach. The company Saling worked for was even published on the Architectural Digest top 100 list four times. Advertisement 3 He started the job because he lost his savings to his wife's medical bills. FOX Gary and Carol, single parents who both had first marriages that ended, first met in 1990 while she was driving and he was walking along a sidewalk after leaving a park. The two caught a glimpse of each other and began talking on a park bench for more than three hours. By the next year, they were engaged and soon after they tied the knot. They later moved from the Golden State to Montana when the pair's children from the previous marriages grew up. 'We fell in love the day that we met at the park,' he said. 'We admitted that to each other later when we were dating.' Advertisement He chose the job at Smith's because he wanted a job that required little thinking after years of using his mind to build homes. The position has also given him the chance to meet people in the area and make new friends, including Duana Johnson, who wanted to know why he was still working hard at 80. When he told her his story and that he'd likely need to work until he dies, she quickly started a fundraiser that picked up steam last week when Fox 13 did a report on Saling. Nearly $40,000 had been raised as of Sunday afternoon – enough money that Saling believes he'll be able to retire by the end of June. Donors can relate to the loving husband's commitment to his wife, Johnson said. 3 The two loved each other and were married for almost 30 years. FOX 'It's awesome to see that because it shows there's a lot of compassion and love in our country that a lot of people are speaking against,' Johnson said. 'A lot of people are saying it's not that way, but I'm seeing the opposite.' 'Gary told me that Carol was very faithful, she loved the Lord,' Johnson added. 'I just feel like her prayers for him as she was leaving this earth are being answered. She loved him so much.' Advertisement The progress of the fundraiser has been documented on a local Facebook page. Saling said he was 'overloaded with gratitude' and 'speechless' at the generosity. 'People have said 'oh what a hero, or an angel or some people have even said saint.' Well my response to them … I'm certainly not a hero, certainly not an angel and far from a saint,' Saling said. 'I took care of her at home from the day she was diagnosed till I held her in my arms when she took her last breath and it was because I took vows, it's as simple as that. I took vows in sickness and in health.'
Leader Live
09-05-2025
- Health
- Leader Live
Why Wrexham family have donated man's brain to research
Peter Taylor was diagnosed with overlapping Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) after years of experiencing unexplained symptoms such as forgetfulness and muscle stiffness – which led to a foot becoming claw like. Both conditions are terminal – with no treatment to slow the progression and no cure available. That is why, after all the tests, appointments and chasing Mr Taylor's family experienced, they were keen to raise funds in his name, while also aiding research by donating his brain after he died last year. His partner Pat, along with children Katie, Leisa, Anna and Tim have been inspired to donate their father's brain in recognition of the challenges the diseases have posed. Katie says she noticed changes developing in her dad, Peter, over around a year. The changes included incontinence, forgetfulness and a foot that had turned in on itself to be almost claw like. She: 'Dad was generally fit and well throughout life. He was very active, playing football and squash regularly, and cycling. I started to notice a variety of subtle changes stacking up. The final straw, which triggered me to contact Dad's GP, was when I saw him without socks one day – all toes on the left foot were contracted like a claw. 'I spent weeks chasing the GP for answers. Eventually, the GP thought Dad could have Parkinson's disease and referred him to the local Neurology Team. "Straight away, the Neurologist suspected a diagnosis of Corticobasal Degeneration, overlapping with traits of Progressive Supranuclear Palsy (PSP). Both suspicions were confirmed following a later brain scan at Walton Hospital. "This diagnosis was devastating for us all. It was very difficult to comprehend what it all meant, and what the future would hold' Due to a lack of awareness and understanding of Corticobasal Degeneration, Katie wasn't sure what support Dad was entitled to, so ended up ringing around different local professionals for help. She added: 'I chased everything up myself. I found a neurology nurse specialist, district nurses, physio, OT, dietitian, hospice. I just called and asked what these people could do, then pestered the GP to refer accordingly, and I didn't stop pestering them until they had! It was frustrating and exhausting.' Pat and Peter Taylor. (Image: PSPA) As a result of the difficulties Peter and the family experienced during his illness, Katie is keen to raise awareness of Corticobasal Degeneration (CBD), and Progressive Supranuclear Palsy (PSP). This included the decision by the family to offer the ultimate gift of donating Peter's brain to aid research into the condition. Katie said: 'Sadly, we lost Dad in August 2024, just three years after his diagnosis. His passing was thankfully quick and very peaceful. Dad's brain is now stored in Manchester Brain Bank, it will be used to help advance research both in the UK and overseas. "This gave us as a family something positive to focus on after all the challenges we had faced during Dad's illness. We also set up an In-Memory JustGiving page for Dad with proceeds going to PSPA.' If you would like to support research into Corticobasal Degeneration and Progressive Supranuclear Palsy, like Peters' family have, you can learn more about PSPA's Understood Appeal at: The Understood Appeal aims to raise £2 million to help progress research into Corticobasal Degeneration and PSP. In particular, the charity wants to fund research which will help to unlock quick and accurate diagnosis, immediate treatment and consistent care. MORE NEWS PSP and CBD are two rare neuro-degenerative diseases. They are caused by the loss of neurons in certain parts of the brain. Over time, this leads to difficulties with balance, mobility, speech, vision, swallowing and cognition. Both conditions are life limiting. There is no treatment and no cure. Currently, around 60 per cent of people living with either disease, are initially misdiagnosed with other conditions including Parkinson's, stroke and depression. PSPA is the only UK charity dedicated to creating a better future for every affected by PSP and CBD.
