I felt lost after my dad was diagnosed with a rare neurological disease. Here's what I wish someone would have told me

Yahoo

05-04-2025

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.
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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 all.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."
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 hand.Deep 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
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