Personal narratives

Patient ‘s perspective
Symptoms | Diagnosis | Living with APBD

Caregiver/caretaker perspective
Diagnosis | Living with APBD

Patient ‘s perspective

Symptoms

We Are APBD 6:17

Chuck Experience of Symptoms  2:01

Summary:

Chuck was diagnosed with APBD in 2011. In this video Chuck talks about the symptoms he experienced early on and how they developed.

Diagnosis

We Are APBD  6:17

Sheila-Searching for a Diagnosis  2:15

Summary:

Sheila, an APBD patient, talks about the journey to getting an APBD diagnosis.

Sheila-Mayo Clinic Makes a Diagnosis  2:26

Summary:

Sheila talks about how her experience at the May Clinic and finally receiving a diagnosis of APBD.

 

Living with APBD

Sheila’s positive attitude critical to coping with APBD  2:59

Summary:

Sheila, an APBD patient, talks about the importance of maintaining a positive attitude.

 

Sheila-Thoughts and Hopes about APBD  3:02

Summary:

Sheila talks about her thoughts and hopes about being a patient of APBD.

 

Sheila-Lifestyle-Keeping it Simple 2:19

Summary:

Sheila, an APBD patient, talks about the importance of keeping everything simple.

Sheila loves the chat room and helps the APBDRF distribute brochures.   2:27

Summary:

Sheila, an APBD patient, talks about her involvement in the chat rooms and how she helps the APBDRF distribute brochures.

 

Sheila – Strategies for Coping With APBD  2:16

Summary:

Sheila, an APBD patient, talks about her strategies for coping with APBD.

 

David – A patient discusses the importance of the APBD Registry.  2:30

Summary:

In this video David talks about looking to the Adult PB Disease Research Foundation as an organization that not only funds research, but also a means of communications and education. He discusses the importance of getting the word out to the medical community of this existence of the disease.

 

David – A patient discusses his involvement with the Adult PB Disease Research Foundation.  2:12

Summary:

In this video David talks about the various ways he has been involved with the Adult PB Disease Research Foundation. He discusses how he has been helping to get the word out that this disease exists and is often misdiagnosed. He further speaks of the comfort and power of connecting with others living with the disease.

 

David – A patient discusses the importance of the Adult PB Disease Research Foundation (APBDRF)  3:18

Summary:

In this video David talks about the value of the Adult PB Disease Registry. After researching it, he learned that the importance of people participating in the registry is so that when treatment trials are ready to begin, there is a base core of people in place that can participate.

 

 

 

Chuck 3:14

Summary:

Chuck was diagnosed with APBD in 2011. In this video, Chuck talks about what his experience has been within the last two years, how his APBD has progressed and how he lives his life now.

 

Caregiver/caretaker perspective

symptoms

Diagnosis

Art: After Receiving a Diagnosis  5:03

Summary:

Art talks about the experience of receiving an APBD diagnosis from the point of view of a caretaker.

 

Art: Searching for a Diagnosis  4:41

Summary:

Art, caretaker of an APBD patient, talks about the difficulties of getting an accurate APBD diagnosis.

 

Art: Taking care of yourself as a Caretaker/Caregiver  5:05

Art: Being a Caretaker/Caregiver  3:35

Summary:

Art, caretaker of an APBD patient, talks about life as a caretaker and the difference between being a caretaker verses a caregiver.

 

 

Susan: Searching for a Diagnosis  3:16

Summary:

Susan’s husband is a patient of APBD. In this video Susan talks about the frustration of getting incorrect diagnoses before her husband was finally correctly diagnosed.

 

 

living with APBD

Art: Advice from a caretaker  4:26

Summary:

Art gives advice on being a caretaker of an APBD patient.

 

Art: Living with APBD  3:22

Summary:

Art talks about daily life as the caretaker of an APBD patient

Art: Looking Towards the Future  3:02

Summary:

Art, caretaker of an APBD patient, talks about the future.

 

SusanVideo-ACaregiver’sPerspective  3:01

Summary:

Susan’s husband is a patient of APBD. In this video Susan talks about what life is like being the caregiver of an APBD patient and how they continue to live life to the fullest.

 

 

Susan: Experience of APBD Symptoms  1:57

Summary:

Susan’s husband is a patient of APBD. In this video Susan talks about the symptoms her husband experienced and continues to experience.