Thank you!

[Abrecheisen53]

Wow - I am overwhelmed by everyone's warm welcome and so encouraged by the support. Thank you! Bittersweet to say the least. I felt so alone, yet unfortunately by the responses I am not. I appreciate and value your friendship(s).

I often feel like John and I are traveling down this dark hall looking for the right room with all the answers. Sadly I have learned that there is no door. So, I have read, researched and tried to the best of my ability to make the best decisions as possible. We are on our third neurologist and I am finally comfortable that this one is the best fit - for now. That said, we go in every six months he checks John over, asks for any new symptoms' and insights-sometimes tries a new med that never works, pats us on the head and sends us home until the next visit. We do have periods of physical and speech therapy but we are pretty much left on our own till the next visit. John would prefer not to know anything about what is happening to him, so I often travel down that hall way alone. I will definitely check out the trials being run in Chicago (2 hours away - sweet!) and also the SmartPatients site. With sincere thanks, Alice

[doglington]

I know exactly how that feels ! It will be familiar to many on this site.

The truth is there is no magic door. But you are not alone and the support here will sustain you more than you imagine because we experience it too.

So many said to me " I don't know how you manage ". We all know we manage because there is no option.

Welcome, love from Jean x

[Abrecheisen53 in reply to doglington]

Thank you Jean

[Mikey12345]

Alice,

Having searched for so long to no avail, I am amazed to read postings that totally "get" it like yours. So comforting to know there are others who have taken this journey and understand the isolating feelings.

I even feel abandoned by the Drs through no fault of their own. Since I can no longer transport Michael for office visits, the 2 neurologists that we have confidence in, are now unavailable to us. They admittedly had nothing to offer in the way of meds or treatment but at least someone with knowledge was watching him. No longer.

They started Michael on zyprexa and celexa yesterday morn to try to treat the aggressive behavior. Now he is sleeping all day. I hope this is temporary.

Michael also chose to not know what is in store for him so I also walk down that hallway.

Thanks for being there for us.

Liz

[Abrecheisen53 in reply to Mikey12345]

I am absolutely amazed that you all are "out there " and so thankful. Alice

[aliciamq]

We don't discuss disease progression here either - so much of what could happen may never happen. With a little luck🤞🏼

[Abrecheisen53 in reply to aliciamq]

I will keep EVERYTHING crossed! Alice

[Benny22lovesus]

Welcome, so sorry you are now a member of this club that no one ever dreamed joining. I've never felt so lost or helpless.My husband doesn't like to talk about it either He has PBP and has the emotional labity too.I've found the people here are kind and knowledge.

[Abrecheisen53 in reply to Benny22lovesus]

Such big hearts around here - even though I know most are breaking. Remarkable. Alice

[Tippyleaf]

The Neurologist we see every 6 months informs us he is monitoring progress rather a euphemism for deterioration😞 I have always found the other Neuro specialist have more to offer, my hubby sees a uro Neurologist and Neuro Psychiatrist both of whom have been I invaluable experts

Love Tippy

Xxxx

[Hidden]

Alice

Unfortunately we all know the hall way,I myself do worry about myself when "that person " says I understand. They do not understand and until they are that person who is truly living with these diseases they will never understand.Sorry your here but you could not of found a better place,so much first hand knowledge.

Ask away,scream,cry,laugh.

Dee in BC

[Abrecheisen53 in reply to Hidden]

Thank you Dee. Joining this group has been one of my best decisions. Alice