Young-Onset ALZ Support in Bend, Oregon

glenc

Hello to everyone out there. If you’re reading this, odds are you are living the nightmare of ALZ or dementia in some form, as am I. My sincere thoughts are with you all.

I’m reaching out with the hope of connecting with someone locally in Bend, Oregon who may also have a wife with Young Onset Alzheimer’s. My wife and I are 56. Far too young to be dealt this blow, but we’re navigating the challenges. My wife has met another woman in a similar situation and they cherish the time on phone calls, but her new friend is on the other side of the country. What I would really appreciate is finding a female friend in Bend in a similar situation who she could spend time with in-person and possibly more often than the occasional phone call. There are limited support groups in Central Oregon, but the ones that exist seem to be predominantly older folks. Please take no offense. I understand this sucks for everyone, but right now, where she’s at in the early stages, she will do much better with a youger companion to confide in. I’m guessing this could be a win-win if a good mutual bond could be formed.

Thanks for your time and please reach out if you think this may be a good fit for you and your partner. I’m not familiar with this app and if I’ll be notified of a response, so I’ll try to check back often.

Thanks again!
Glen & Shanna

harshedbuzz

@glencamuso

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I can totally appreciate wanting to find someone closer in age to your DW as a friendship built on mutual experiences (like the era in which they grew up for instance) will be more authentic. Two places you might explore would be the local support groups/memory cafes— you might find a spouse in a similar situation. Another thought would be to reach out to a social worker at office where she was diagnosed (assuming a memory practice) to see if they could help you find someone nearby.

HB

Bowerbird

Welcome @glencamuso This is a great group to connect with in starting your journey. Everyone here is with very empathetic and knowledgeable.

In case you are unaware, there is a discussion group here on ALZConnected for those with younger onset ALZ. Perhaps there will be someone there who is closer to your city or state. Even if they are not, the group itself will provide a lot of support to your LO and you.

https://alzconnected.org/categories/i-have-younger-onset-alzheimers

glenc

Thank you harshedbuzz and Bowerbird. I appreciate the replies and recommendations.

There are two upcoming support group sessions locally, which we are planning to attend. Although they are open to all ages, we'll be there to see what we learn. You never know who may show up. I can only imagine there are others walking the same streets in the same situation.

Best wishes,

Glen

Paradoxical

Soo.. this is my first post here and by no means is it meant to hijack your thread.

A little background:

My DW was diagnosed with early on set Alzheimer’s a couple of years ago. She is now 64. She has undergone 12 infusions of Donanemab over the last year or so and her last MRI (3 weeks ago) reflect that she has developed ARIA-E, essentially 12 sites of micro-hemorrhaging. She is scheduled for a follow up MRI next week (to monitor the hemorrhaging) however, her infusions have been permanently discontinued by UCLA as a result.

We live in Lake Havasu City Arizona but maintain a rental in Los Angeles since we both like the health care we receive at UCLA. We do have a December consult scheduled at the Mayo Clinic in Phoenix (where our youngest lives) but, I suspect they won’t be able to provide us with anything more than what is currently being provided.

My DW is extremely social and is in pretty decent mental shape, all things considered. She likes to go out to eat, take long walks and can sit for hours just talking. She is cognizant of what’s going on but needs a bit of help with some basic activities such as reading, counting money and, to a certain extent, navigating to a destination within a mall, large restaurant and other public places.

I too would also like to meet others in a similar situation so my wife has someone younger to relate to. In addition, it would be great to discuss additional treatment options others are undertaking in an effort to make sure we’re doing all we can.

We can meet in So. Cal. or anywhere within 60 miles or so of Lake Havasu.

I appreciate what you’re trying to achieve and am hoping to do likewise.

Thanks,

Rick and Patty