Caregivers guide to psp

A Guide for Family Caregivers of Loved Ones Newly Diagnosed with Progressive Supranuclear Palsy (PSP)

Progressive supranuclear palsy (PSP) is a rare brain disorder that causes serious and progressive problems with gait and balance, as well as complex eye movement and thinking problems. Being a caregiver for a loved one with PSP can be challenging, but here's a guide to help you navigate this journey.

Understanding PSP: PSP affects a person's movement, balance, speech, swallowing, vision, mood, and behavior. The progression of the disease varies but typically the person experiences difficulty with balance, blurred vision, and cognitive issues. Educate yourself about PSP, its symptoms, and its progression so you can better support your loved one.

Medical Team Coordination: Work with a healthcare team that has experience with PSP or similar neurological disorders. This team might include a neurologist, physical therapist, occupational therapist, speech therapist, and nutritionist. Regular appointments and communication with this team will be key to managing your loved one's symptoms and comfort level.

Home Safety: To prevent falls, remove hazards in the home like loose rugs and clutter. Install safety bars in the bathroom, use non-slip mats, and consider using a shower chair. As the disease progresses, you might need to consider a wheelchair or other mobility aids.

Communication: PSP can cause slurred speech and difficulty swallowing. Working with a speech-language pathologist can help manage these symptoms. They can suggest communication devices or strategies, as well as techniques and diets to minimize choking while eating and drinking.

Nutrition: Difficulty swallowing can lead to weight loss and malnutrition. Working with a dietitian can help create a meal plan that is nutritious, easy to eat, and enjoyable for your loved one.

Mental Health: PSP can cause mood changes, depression, and apathy. Emotional support is crucial, and so is professional help. Psychiatrists, psychologists, or therapists who are knowledgeable about PSP can provide valuable help.

Self-care: Caregiving can be stressful, and it's important for caregivers to take care of their own physical and mental health too. Make sure you're eating right, getting exercise, and taking time for yourself. Support groups, either online or in-person, can provide comfort, reduce feelings of isolation, and provide practical advice.

Planning for the Future: PSP is a progressive disease, and planning for the future is crucial. This might include discussing legal, financial, and end-of-life issues. Consult with a social worker or legal advisor to discuss these matters.

Remember, every person with PSP has a unique journey. It's a challenging condition, but many resources are available to help. Ask for support when you need it, and take things one day at a time.
Back to blog

2 comments

MY MOM HAS PSP AND PARKINSONS. IT HAS BEEN A VERY HARD, BUT I HAVE LEARNED TO COPE, AND WORK WITH HER THE BEST WAY. SHE HAS NO MORE MOBILTY AND I HAVE TO DO EVERYTHING FOR HER, KEEPING A ROUTINE IS VERY IMPORTANT. COMFORTING HER WHEN NEEDED. SHE IS FRAGIL AS A BABY NOW. BUT IT IS VERY IMPORTANT TO HAVE PATIENCE . I HAVE NO SUPPORT FROM FAMILY, BUT MENTALLY IT CAN BE ALOT. BUT I HAVE LEARNED TO BUILD THE STRENGHT TO BE BY HER SIDE DAY BY DAY.

BRITTNEY BARRERA

Caregiver for husband who has been diagnosed with PSP…need info on study being treated with stem cells in Connecticut .

Jeannie Nix-Temple

Leave a public comment:

Please note, comments need to be approved before they are published.

  • Register Today - Tickets Going Fast! May 3rd in Burlington Ontario

    Register Today - Tickets Going Fast! May 3rd in...

    Time’s ticking to register for our FREE Awareness Walk Starting at The Hub in Burlington Centre! Over 50 of you are already in, and the first 100 to sign up...

    Register Today - Tickets Going Fast! May 3rd in...

    Time’s ticking to register for our FREE Awareness Walk Starting at The Hub in Burlington Centre! Over 50 of you are already in, and the first 100 to sign up...

  • The Challenge of Being One: Helping as Many as Possible

    The Challenge of Being One: Helping as Many as ...

    There’s a quiet weight that comes with wanting to help others when you’re just one person. It’s a desire born from empathy, from seeing the struggles around you and feeling...

    The Challenge of Being One: Helping as Many as ...

    There’s a quiet weight that comes with wanting to help others when you’re just one person. It’s a desire born from empathy, from seeing the struggles around you and feeling...

  • The Unseen Struggle: Advocating for Someone with Atypical Parkinsonism

    The Unseen Struggle: Advocating for Someone wit...

    Living with atypical Parkinsonism is a complex and often misunderstood journey—not just for the person experiencing it, but for those who love and care for them. Unlike classic Parkinson’s disease,...

    1 comment

    The Unseen Struggle: Advocating for Someone wit...

    Living with atypical Parkinsonism is a complex and often misunderstood journey—not just for the person experiencing it, but for those who love and care for them. Unlike classic Parkinson’s disease,...

    1 comment
  • Board of Directors at Coleen Cunningham Foundation 2025

    Board of Directors at Coleen Cunningham Foundat...

    Introducing the backbone of CCF—our Board of Directors! This carousel showcases the talented individuals guiding our organization forward. Each photo is paired with a brief look at their unique role...

    Board of Directors at Coleen Cunningham Foundat...

    Introducing the backbone of CCF—our Board of Directors! This carousel showcases the talented individuals guiding our organization forward. Each photo is paired with a brief look at their unique role...

1 of 4