Hearing loss - harbinger of PSP?

[Tukan]

Hope you are all coping and muddling along. As yet another lockdown-(ish) weekend draws nigh, I am feeling particularly homesick - I really was hoping to go and see my mum soon (she's the one with PSP ) but, sadly a Covid spike in India means that is not to be - at least not just yet. Her doctor has also decided to park her PEG tube implantation op. to avoid going into a hospital right now, so my primary purpose of supporting dad when that happens is also now in jeopardy. My dad (75) is mum's primary carer and I so admire him for his unflinching stoicism and sense of dutiful compassion even though it drains him both physically and emotionally. As for me, I am forever guilt ridden about how little we as children can actually do from miles afar. Life's pound of flesh in this age of diasporas I guess.

Anyway, rambling thoughts apart, one question dad asked me today was what were the earliest symptoms people who later go onto develop PSP experience. For example mum started experiencing hearing loss suddenly and inexplicably, way back in 2011- much before the falls started in 2015/16 - was this a red herring for the onset of PSP? Has anyone had a similar experience?

Sometimes it feels like clutching at straws, but its so addictive to try and investigate, as to why this had to happen; why her, why us!

[LuisRodicioRodicio]

Hi Tukan!I'm sorry PSP/CBD/ etc. has entered your family.

These are our experiences about:

My wife was diagnosed with PSP-RS. Before the first specific symptoms showed up in March 2012: difficulty with speaking as if she had a stone in her mouth and a slight tremor in the ring finger. It is worth highlighting a reduction in the size of her writing and worse structure of the letters as well as greater difficulty in keeping up with a walk at normal speed (3 to 4 km / h) from March 2010.

Not hearing loss during all the process. But PSP symptoms could be different for each patient.

The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that - added to the difficulty in speech and walking instability - guided towards the PSP-RS diagnosis). DATscan between 2012 and 2015 did not confirm the suspicions about PD, PSP-RS, PSP-P, PSP-CBD, etc.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we ere living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the notes-document with our experiences and our informations are of someone´s interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

[Runner333 in reply to LuisRodicioRodicio]

My husband has recently been diagnosed with PSP and I would really appreciate it if you would be willing to share your collection notes. Please let me know the best way to communicate. Thank you so much from a new caregiver.

[Tukan in reply to LuisRodicioRodicio]

Hi Luis,

Thank you. Yes please that would be great. I will message you with my email address privately. I agree - this site is becoming such a comfort go-to place for me. I know it sounds mean maybe, but I feel some succor in thinking its not just us alone. There are others who are experiencing the same despair as we often do and are still coping with this horrible disease.