Testimonials - Your Voice

Here, you can find out what our valued members are saying about us and read their heartfelt comments. We believe that the experiences and opinions of our community are essential, as they reflect the true essence of our organization. Join us as we showcase the voices that make our community thrive and discover the impact we have on our members' lives.

 

My 58 year old son has been followed by neurologist, thinking either frontal live dementia or PSP

From what i am reading seems more like PSP, his voice is quiet, balance off etc

He is on levodopa but don't see improvement

CINDY LABISH

 

My father is entering the last stages, currently in the hospital with sepsis, chronic anemia, a kidney infection, and his body twisting into the most uncomfortable positions. He is also a retired physician and all too aware what is happening to him. Arranging care has been difficult through stages 2 and 3. Harder still, now that we are suddenly and firmly in 4, we are seeing him suffer through moments of paranoia and hallucinations. I understand that these symptoms are more common with Parkinson’s, but we are seeing it with PSP and it is heartbreaking.

CHRISTOPHER

 

PSP and Parkinson’s have similar symptoms but are not otherwise related. My wife has psp where early symptoms were gross imbalance. We also noted a flicker in her left eye when focusing intently on something. The neurologist who finally diagnosed also noted that in her right eye but less noticeable. All of the other symptoms spoken of here have been hers as well. Do some memory lanes talking with these loved ones and let them know of the blessing they brought into your life and how valued they are because of that! When asking questions about foods, for example, don’t give a list and ask which one. One at a time, ask yes or no and coach the a nod or head shake will be OK. Short term memory is gone, like Parkinson's so they can’t handle a list. That is a backhanded blessing for them because something bad that happened yesterday is not remembered today! Be positive!

MERRILL NISSEN

 

My mother in law is 67 at present and is suffering from PSP for last 4 years. She today is admitted to Hospital due to breathing difficulty and Doctors decided to keep her on ventilator as her oxygen is 45 percent instead of 95 or above. Doctors said that she has infection in her lungs and needed antibiotic. Just wondering if anyone experienced the same and open to guidance on what to expect. Thank you all

PRAVEEN

 

My wife passed in 2011 from psp. She was bipolar and suffered from depression.
She was given 12 to 15 shock treatments 
In 2009 -2010. I feel the shock treatments 
Lead to her psp. Just wondering???

BRUCE GADAIRE

 

I was referred to Mayo Clinic by my family doc and was just diagnosed with PSP a few months ago at Mayo. I am still getting along in my home with the help of my husband. I do not have Alzheimer’s as I passed the test for it. They say PSP is not inherited, but I don’t know how they can be sure as they know so little. My paternal grandfather was diagnosed with MS in the 1930’s and I cannot help but wonder if he was misdiagnosed. I have a lift power chair to help me get up, but use it sparingly as I want my muscles to do work as long as possible. My balance is not good. My bowels have slowed down, and I need lots of fiber supplements. I am wondering if anyone who reads this also suffers from constipation.

DIANE

 

My mom died of PSP and my sister died of Parkinson's. Are they related????

JANIS KING

 

My husband has PSP and it is devastating. I am caring for him with help of part time aide. What I have read here was very helpful, I thank you.

MAXINE WERNIK-FAUSAK

 

To answer a question that someone had , my mom was first told she had a stroke after knee surgery . She just said she knew that wasn’t it and she stayed after her Dr to continue to order more tests until they realized it was PSP. Scary disease to watch your loved ones die with this & it’s scary to think it could happen to you as well . But my mom never got dementia and so far my sister has a great memory still . So I don’t think she’s going to lose her memory either .

GLENNA COLE

 

My mother had PSP and died in 2013, my sister started showing same symptoms in 2015 by 2019 she was diagnosed with PSP which we already felt like she had it . She is probably getting towards the last stage now , in a nursing home . It’s a horrible disease . She has to adult sons and I’m her only sibling and I have 3 sons and 2 daughters , all grown now . My sister was 56 when diagnosed. We are all so afraid we might get this as well . However 3 people in our city have had this and 2 were my mom and sis. Praying for a cure or meds to slow this down for everyone.

GLENNA COLE

 

I found this helpful as the doctors in our area do not know much about this illness and we are struggling by ourselves. Possibly we will get him enrolled in Palliative Care very soon. I am having difficulty getting him to eat anything or to drink much of any fluids. He has dementia advancing daily it seems.

MELBA V ANDREWS

 

Thank you . As a carer it’s essential to know about the journey we and our loved ones are on.

SUSAN SWEET

 

Hi,
I was wondering if anyone knows how often this is misdiagnosed as dementia (ie FTD) and if siblings are likely to suffer from it.
Thanks.

LOUISE

 

i CERTAINLY LIKE WHAT i AM READING. I AM 84. I CANNOT SAYI WANTED THIS TO HAPPEN BUT IT HAS.

VALERIE Y ROSAS

 

All this info is so appreciated. I care for my husband.

PHYLLIS DOUGLAS

 

My ex husband has been diagnosed with PSP we think he’s probably 2-3 yrs looking at the symptoms he’s showing

SANDRA MASINI

 

My beloved father went through this ordeal… 2011 to 2015..he was in Stage 1_somehow we dragged it through alternate therapies. 2015 to 2017..he was in Stage 2. 2017 to 2019 March… He was in stage 3. 2019 April, he was admitted for Aspirational Pneumonia.. Came back home in a week..did well that month.. By 20th of May, he started slowly fading out.. And he broke my heart and left us on 31 May 2019. My beloved father stayed with us all through _loved and cared by me, my wife and my daughter. Being a Caregiver is very hard on us as we have no experience on the changing circumstances and no control on the outcome. I wish the best for all who are going through a similar situation. Love your parents more now.. My hugs to you..

HEMANTH CHANDRASHEKAR

 

Theirs a probability I’ve PSP,but suffering slightly different symptoms of falling forward after not being able to control my walk

CRISPIN MERRIMAN

 

Thanks you for this. I’m a carer and just wondering how far she has to suffer and what more there is to come. It was very useful.

TIM

 

Thank you for this. I’m a carer.

DAMETRA

 

I found this very useful as I’m a carer and didn’t know alot about psp.

MARLENE HARRINGTON

 

Thank you for all that you do

SHERRI PONDER

 

About Us: 

The Coleen Cunningham Foundation serves individuals and families dealing with Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA) and Corticobasal Degeneration (CBD).

Mission

The Coleen Cunningham Foundation (CCF) is dedicated to honoring the legacy of Coleen Cunningham by providing comprehensive support to individuals and families affected by Atypical Parkinsonism. Our mission is to improve the quality of life for those impacted by these rare neurological disorders through compassionate care, advocacy, and education. We strive to foster a supportive community, offer respite and hospice care, and advance the understanding and management of Atypical Parkinsonism.

Objectives

1. Provide Compassionate Respite and Hospice Care

• Respite Vacations: Offer families affected by Atypical Parkinsonism the opportunity to create cherished memories through specially designed respite vacations.
• Respite Hospice in the Caribbean: Establish a dedicated hospice facility in the Caribbean that provides comprehensive care and relaxation for families, ensuring a serene environment for both patients and caregivers.

2. Support and Empower Families and Caregivers

• Support Groups: Facilitate regular support group meetings to provide emotional and practical support for caregivers, patients, and families.
• Educational Resources: Develop and distribute educational materials to help families and caregivers understand and manage the complexities of Atypical Parkinsonism.
• Advocacy: Advocate for the needs and rights of those affected by Atypical Parkinsonism at both the local and national levels.

3. Advance Medical Understanding and Management

• Collaborative Research: Partner with medical institutions and researchers to support studies aimed at understanding Atypical Parkinsonism and developing effective treatments.
• Medical Insights and Training: Provide healthcare professionals with the latest insights and training on Atypical Parkinsonism to improve patient care.

4. Promote Awareness and Education

• Public Awareness Campaigns: Conduct campaigns to raise public awareness about Atypical Parkinsonism and the challenges faced by those affected.
• Educational Events: Host seminars, webinars, and workshops to educate the public, healthcare professionals, and policymakers about Atypical Parkinsonism.

5. Foster a Supportive Community

• Online Community Platform: Create and maintain an online platform where individuals and families can share experiences, find support, and access resources.
• Engage with Stakeholders: Build partnerships with organizations, companies, and individuals dedicated to supporting neurological disorders to enhance our outreach and impact.

6. Expand Global Reach

• International Collaboration: Work with international partners to share knowledge, resources, and best practices in the care and management of Atypical Parkinsonism.
• Resource Distribution: Ensure that educational and support materials are accessible to a global audience, reaching as many affected individuals and families as possible.

Commitment to Excellence

At the Coleen Cunningham Foundation, we are committed to excellence in all our endeavors. We pledge to uphold the highest standards of care, compassion, and professionalism in our services, ensuring that every individual and family we support receives the best possible assistance and guidance.

Together, we can navigate the challenges of Atypical Parkinsonism, creating a brighter future for those affected by this condition.

No One Walks Alone!

Laura Louizos
Executive Director
Coleen Cunningham Foundation for
PSP Awareness