Lewy Body Dementia at age 51: Anyone else with early onset LBD?

Posted by Jen @jen26, Jul 10, 2021

Hello,
I have just joined the group. My husband was diagnosed with lbd 9 months ago at 51. I was wondering if anyone else has a loved one who was diagnosed at younger age than the norm. There seem to be unique issues, and I’ve been told it is usually faster progressing. Is anyone dealing with this?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

nskinner5 | @nskinner5 | Aug 28, 2021

In reply to @amandaa "Hi @nskinner5, Yes there is. The generic name for Xarelto is Rivaroxaban. Are you taking it?" + (show)

No, I don’t think so. I am on Plavix.

nskinner5 | @nskinner5 | Aug 28, 2021

What are the side effects?

amesmassage | @amesmassage | Aug 28, 2021

In reply to @farmer0233 "I don't think so. It's a very ex blood thinner. 1400.00 a month. My insurance was..." + (show)

There are MANY blood thinners, and some are very cheap.

farmer0233 | @farmer0233 | Aug 28, 2021

In reply to @amesmassage "There are MANY blood thinners, and some are very cheap." + (show)

I was on Warning and no problem, had to have blood test every week ot 2. Pharmaceutical office doe the health care plan suggested that my MD put ne on this Xarelto. It was down hill from first week. Almost put me in nursing home with dementia. I have friends in Henderson and her Dad in nursing home on Xarelto. She had MD stop the Xarelto blood thinner and he was home in a week, his memory coming back. I did some research and checked neighbors and 3 had died from the blood thinner because they didn't go to md when feel down

farmer0233 | @farmer0233 | Aug 28, 2021

Warfarin blood thinner

Colleen Young, Connect Director | @colleenyoung | Aug 29, 2021

In reply to @kellywilbanks "Hi. Would you share the link for the support zoom groups you are in ??" + (show)

Mayo Clinic hosts two virtual support groups that may interest you.

1) Caring Conversations Support Group
Caring Conversations is a virtual support group intended for anyone who is providing support and care to a spouse, partner, or other relative or close friend living with Alzheimer’s disease, Lewy Body dementia, Frontotemporal degeneration, mild cognitive impairment or a related disorder. Led by Mayo Clinic facilitators, the purpose of these meetings is for individuals to feel heard, understood and supported. The group offers a place to share experiences and feelings confidentially with others who are on a similar path with opportunities for reflection, problem-solving, and information gathering. Meetings are open to the public and are free.

DATE AND TIME LOCATION FOR MORE INFORMATION
1st Thursday of each month
11:00-Noon CST (12-1 p.m. EST)
Contact: Jodi Melius at melius.jodi@mayo.edu or call 507-284-1324

2)Caring for Lewy Education & Support
Caring for Lewy is a monthly education and support program uniquely designed for families and relatives who provide care and/or support to a person with LBD. The program offers a group setting where participants share experiences and feelings confidentially with others who are on a similar caregiving path with opportunities for reflection, problem-solving, and information exchange. Some of the meetings will include a presentation by Mayo Clinic experts from both Rochester MN and Jacksonville FL on topics related to LBD. Time for questions and discussion will follow. The program is open to the public and is free.

DATE AND TIME LOCATION FOR MORE INFORMATION
2nd Thursday of each month
2:00 p.m. – 3:00 p.m. CST (3:00 p.m. - 4:00 p.m. EST)
Contact: Jodi Melius at melius.jodi@mayo.edu or call 507-284-1324

All welcome.

kellywilbanks | @kellywilbanks | Aug 29, 2021

In reply to @colleenyoung "Mayo Clinic hosts two virtual support groups that may interest you. 1) Caring Conversations Support Group..." + (show)

I live in St Petersburg ,Fl. Are any of these care groups available on Zoom ? Since I can not attend in person .
Thankyou. Kelly Wilbanks

Colleen Young, Connect Director | @colleenyoung | Aug 29, 2021

In reply to @kellywilbanks "I live in St Petersburg ,Fl. Are any of these care groups available on Zoom ?..." + (show)

Yes, Kelly. Both Mayo Clinic support groups are available on Zoom. Contact Jodi Melius @jodimelius at melius.jodi@mayo.edu or call 507-284-1324 to get the link.

kellywilbanks | @kellywilbanks | Aug 31, 2021

In reply to @colleenyoung "Yes, Kelly. Both Mayo Clinic support groups are available on Zoom. Contact Jodi Melius @jodimelius at..." + (show)

Thankyou so much. I do appreciate this

jean78 | @jean78 | Aug 27, 2022

In reply to @farmer0233 "So far my MD is not listening to me on side effects of thyroid medication. Thyroid..." + (show)

I am curious. I am on levothyroxine, liothyronine and Xarelto. What kind of side effects and symptoms are you showing? Do you know which symptoms are coming from which meds?