2021 LBD Summit Recorded Content & More!

Hello, I am so glad that you found the Summit helpful and enjoyed the content. There is a great resource for all things medications related to LBD, on the LBDA website. It's a PDF document and I've linked it here: https://www.lbda.org/wp-content/uploads/2020/09/medication_glossary_2015-1.pdf

I hope you find this helpful.

thank you

Thank you, Jodi, for directing me to this informative site. My husband was diagnosed with Parkinson's/Lewy Body Dementia two years ago by Mayo doctors in Arizona. His Mayo medical team has been wonderful in caring for him, and helping me to understand his medical needs/journey. The Parkinson'/LBD diagnosis came some time after he had suffered two strokes (3 years ago), and just prior to a total hip replacement. I actually began noticing cognitive changes about 8 years ago. I began to take notes of my observations because "strange things" were happening. Of course, he tried to tell me that he "had always been this way" -- and that I "was the one who was changing." I thought I was losing my mind!

I have been my husband's only caregiver for these past three years. It is exhausting, with never a day or night off. I know that eventually, I may need help; however, we live in a very rural community with at least 50 miles to services (PT, hospital, doctors, pharmacy, etc.) and it is difficult to get anyone to do "in home" care. Eventually, we may need to sell our home and move closer to civilization... but I am not ready, nor have the energy, to do that yet.

I look forward to learning more about my husband's diagnosis, and sharing experiences with other caregivers.

Welcome hbjuniperflat. Love the username. Do you have a liking for junipers?

I can certainly understand the extra challenges of being a single caregiver in a remote/rural community. I encourage you to join the discussion in this group.
– Caregivers: Dementia (https://connect.mayoclinic.org/group/caregivers-dementia/)

You might want to start by introducing yourself here:
- Introductions: Are you caring for someone with dementia? https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/

Hello @hbjuniperflat

I would like to welcome you to Mayo Clinic Connect, a patient support group. On Connect we are not medical professionals but we share our experiences in order to encourage each other. I can understand your need for information, support and, connect with others who are also caregivers.

I would like to invite you to join one of the Connect discussions that might be helpful to you. Here is a link to a discussion, https://connect.mayoclinic.org/discussion/lewy-body/.

If you care to share more, what is your husband's most troublesome symptom right now? Is it walking, gait, balance, sleep problems, etc.?

I missed the the first part of the Summit as i was called to come to the Nursing Home where my significant other is staying due to report of worsening condition. I am looking forward to the recording asap. I have not had any kind of satisfactory care either in Memory Care or Nursing Homes. He is on Hospice now in Nursing home. I am considering returning him home but not sure that I can adequately take care of him. He fluctuates from day to day being unresponsive to being more alert with eyes open and tries to speak but sometimes doesn't make sense or volume is too low to understand. I can tell he understands me on his better days at times. I am so disappointed with the care he has received. I am considering bringing him back home but not sure if I can physically take proper care of him.

Thank you for sharing your experiences. There are no easy words to use in response, but I appreciate your honesty in sharing these very difficult decisions that you are faced with. I know many other caregivers may also relate to what you are sharing.

Thank you for your warm welcome and links to other groups. Yes, I do love junipers; however, our user name comes from an area of high plateau in Oregon known as Juniper Flat. Palm trees are actually my favorite! LOL

My husband's most troublesome symptoms right now are sleep problems (diagnosed with REM Sleep Behavior Disorder) and short term memory loss from two strokes. In addition, the LBD adds lots of confusion to each day. Example: the other day he asked me, "What's the cowboy's name over there?" When this happens, I don't know if he is hallucinating, or if he is just not able to come up with the right word to describe what he wants to know. It actually turned out to be the latter in this case... he was asking about a cactus. Keeps me on my toes, that's for sure.

@hbjuniperflat

You describe your husband's difficulties very well. In the presentation on LBD last week, sleep problems were addressed. It was reported by the doctors in the presentation that addressing the sleep problem can decrease some of the other dementia symptoms.

What sort of sleep aids is your husband using? Many people use a CPAP machine if they have sleep apnea. I was surprised to learn that Melatonin is also often used.

I would like to invite @kristin816 to this discussion. She is a caregiver for her father with LBD. Perhaps she can add something to this discussion.