Common Denominator

[Armybrat88]

I was searching today on the closing of someone's eye that has PSP and I discovered your group. As I read through some of the posts, I found that many of what my boyfriend is experiencing and the impact it has on the individuals that love the person with PSP, to be exactly what I was witnessing with my boyfriend as well as the emotional rollercoaster I have been on.

In darkness, there is light. This group is the light.

[honjen43]

Welcome. So pleased you found this group!!I am sure you will find help, support and friendship here!

Hugs

Jen xxx

[Armybrat88 in reply to honjen43]

Thank you @honjen43. I too am glad that I found a group that understands how horrible this disease is. Hope to learn more from others. I also have seen this is an orphan disease without as much notoriety as let's say as Parkinson's. It took nearly a year for Phillip's diagnosis but when I think back about things, I know the signs started to show up nearly two years prior. The progression of things ebbs and flows. We are nearly one plus year from diagnosis and in this past year, Phillip is unable to walk, his eye is starting to close, his ability to swallow is getting more challenging as is his ability to talk and he is withering away as his weight continues to dip. I am grateful to have a group that I can talk to because I just don't think others understand how heartbreaking this disease is.

Thank you for reaching out to me.

[LuisRodicioRodicio]

Hi Armybrat88!

Hi!

I'm sorry PSP/CBD/ etc. has entered your environment.

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 was 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 your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

[Armybrat88 in reply to LuisRodicioRodicio]

LuisRodicioRodicio Thank you for your note. Phillip lives with his brother now and had been spending half his time here and half time there. As his condition has declined rapidly over the past six months, he is permanently residing with his brother.

Look forward to learning from others because this frankly is one of the hardest hills have ever had to climb and want to be able to support Phillip in this journey.

Thank you again for reaching out to me.

[daddyt]

Welcome to the group that no one wants to belong to, but are sure glad it's here. The closing of your loved one's eye(s) is called blepharospasm, an involuntary closing, or, as in my case, excessive and incessant blinking. Botox injections may help if the problem worsens. As the disease progresses, you'll need all the light you can get - keep yours shining.

Tim x

[Armybrat88 in reply to daddyt]

Thank you daddyt . This is really a hard hill to navigate. There is no navigational support on this not even really with the medical universe as it seems this is an orphan disease that has not had attention like other neurodegenerative diseases. Regardless, I thankful for the fellowship to learn and understand more about this disease and help Phillip navigate this journey.

Shannon

[daddyt in reply to Armybrat88]

Shannon, if you are in the UK, the PSPA is an invaluable resource for PSP information, programs ect. If you are in the US or Canada, CurePSP.org is your go-to resource. Both organizations are the gold standard for brain disease.

Tim