Manhattanite
Distinguished member
- Joined
- May 10, 2015
- Messages
- 209
- Reason
- Lost a loved one
- Diagnosis
- 05/2015
- Country
- US
- State
- NY
- City
- New York
Hello everyone,
I have been lurking in the forums learning as much as I can from all of you since May 1, when my partner of 14 years was diagnosed with PBP.
He is 55, I am 47 and we live in NYC. Back in December he noticed he had trouble pronouncing certain words, so he went to his doctor in April. The doctor suspected it was a mini stroke or a tumor and ordered an MRI and an EKG from a neurologist. My partner had the EKG first and on that same visit the neurologist immediately diagnosed him with PBP and sent him home without further ado. He told me that evening and I was shocked, hoping it was a mistake. We had to beg to see the neurologist again, otherwise he wouldn't have seen us until July. On the second visit he clarified that the disease was at a very early stage. Regardless, the way the diagnosis was delivered seemed harsher than usual, especially without having the MRI or even blood work! So we have second and third opinions scheduled for June with other specialists but the dysarthria and dysphagia are both there.
In any event, here I am early in the process, dreading what lies ahead. I am coming to terms with accepting a different future than we had planned. I know that as human beings we can adapt to anything, but it is the emotional suffering that scares me the most. I am not religious but I follow a yoga practice that has helped me to remain centered and to step back a little from the emotional pain, although it comes in strong waves.
Thank you for listening. :neutral:
I have been lurking in the forums learning as much as I can from all of you since May 1, when my partner of 14 years was diagnosed with PBP.
He is 55, I am 47 and we live in NYC. Back in December he noticed he had trouble pronouncing certain words, so he went to his doctor in April. The doctor suspected it was a mini stroke or a tumor and ordered an MRI and an EKG from a neurologist. My partner had the EKG first and on that same visit the neurologist immediately diagnosed him with PBP and sent him home without further ado. He told me that evening and I was shocked, hoping it was a mistake. We had to beg to see the neurologist again, otherwise he wouldn't have seen us until July. On the second visit he clarified that the disease was at a very early stage. Regardless, the way the diagnosis was delivered seemed harsher than usual, especially without having the MRI or even blood work! So we have second and third opinions scheduled for June with other specialists but the dysarthria and dysphagia are both there.
In any event, here I am early in the process, dreading what lies ahead. I am coming to terms with accepting a different future than we had planned. I know that as human beings we can adapt to anything, but it is the emotional suffering that scares me the most. I am not religious but I follow a yoga practice that has helped me to remain centered and to step back a little from the emotional pain, although it comes in strong waves.
Thank you for listening. :neutral: