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LIVING WITH LEWY BODY DEMENTIA Q&A PART 1
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- Опубліковано 9 січ 2021
- LIVING WITH LEWY BODY DEMENTIA Q&A PART 1
You asked and we answered! Part 1 of our question and answer video!
Part 2 will be out later this week! Thanks so much for all your support!
Want to help us continue to make videos? Donate on Paypal: www.paypal.com/donate/?hosted...
Lewy Body Dementia Playlist: • LIVING WITH DEMENTIA
www.ALZ.org for more information.
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/ acharmingabode
/ acharmingabode
We tried our hardest to answer most questions! Part 2 will be out later this week!!
You both are adorable and I've been following your journey. This video has no CC and I'm deaf. I would be very grateful if you could fix that. Wishing you the very best. Hugs
@Cindy Pyper Thank you!! UA-cam is being kind of slow with captions today! Check back in just a bit to see if they got added! Hopefully they will be loaded soon!
@Carolyn Thompson He's ornery! HAHA
I’m so impressed with you guys! Even the hardest questions you guys knowledge at least. You are amazing, so happy to have found your channel! I’m here trying to understand more and more of this world because I want to help my mom, she’s having the hardest time being the full time care person for my dad, who was diagnosed 2 years ago with Alzheimer and has been struggling a lot with, sleep, medication and hallucinations 😞
Love your family!
Thank you! ⭐️🙏🏼♥️
I love watching your videos especially with Jason. You two are so inspiring and have amazing attitudes. God bless you both!
The happiest point of this video is that you are both born again. No matter how much time you may have left on earth together, you know that you have eternity to be with each other. This world is just the beginning. Blessings ❤️
I'm so glad you don't bother to focus on "time"! Only God knows that answer. My late BIL when diagnosed with cancer asked the oncologist how long he had. The doctor said, "You know, I've treated a lot of patients and I've yet to see an expiration date stamped on a foot. If you want to know what the statistics say, I'll tell you. Truth is, my patients who don't worry about that seem to live longer!" Staying positive and not worrying about an uncertain date is the best way to maintain joy I think. Thank you two so very much for sharing your lives with us.
Jason has such a wonderful sense of humor. He is adorable!
Agreed!
I completely agree! He is a sweetheart and blessed with a beautiful, caring wife. ♥️
"How do we stay cheerful? Jesus." What a testimony!!!
I am in awe of you, I know people have questions, I wouldn’t answer them, and you did, good for you, please only do what you feel comfortable with, and to the people out there that asked about Jason’s libido, too personal, too too personal! Look it up in a medical journal, if it is that important to you! These lovely people are not our personal friends, be sensitive, some thing are private between man and wife, and they have daughters. Looking forward to part 2, I think! 💚
Thank you! Yes some of the questions were a bit much! We tried to just laugh those off and move on! LOL Thank you for your kind words! We appreciate them! 💜
Perfect post.
I have to agree with you, that is just too personal to be putting out there to the world and I don't care how old your "kids" are, this isn't even a topic to be discussed with them (unless of course parents and children feel differently). That question just over-stepped all boundaries. Would they be comfortable discussing their private life with thousands of strangers on UA-cam? I really doubt it. Thank you Jason for standing your ground and making that topic off limits, great job!
Don't take a prognosis timeline to heart. They don't know. My mother lived ten years after diagnosis and she had had symptoms for probably 10 years prior. She was a joy to be around and kept us laughing and singing all the way. If there comes a time where he is unable to come up with your name, don't worry. He will still recognize the love. I learned that.
Jason was cracking me up! You guys are literally childhood Sweethearts... it’s amazing you were able to make a marriage work being so young and having children so early. Congratulations on building such a beautiful life. Your daughters are adorable by the way
Thank you so much!! They are my pride and joy 💖😊
Put on the, “ Armor of Christ.” 🙏✝️JESUS IS THE ANSWER♥️🙏 Abundant Blessings to both of you 🎚💕
He definitely is! 💙
I am glad to hear that Jason is a veteran, and can therefore receive care from the VA. As a VA nurse who has taken care of many cases of all types of dementia, I have seen the positive side of caregiver support. The VA I worked at in Illinois, provided excellent care to our veterans. My late husband died of cancer, and when I could no longer control his pain at home, he went to inpatient hospice care. They provided phenomenal care for him and myself. I am most happy to hear that you have Jesus in your hearts.☺️
Thank you so much 💜 I am so sorry to hear about your husband. It's nice to hear you had wonderful support and care when you needed it the most. 😊🙏
My gosh!! people has no business to know about the house and all the other things. I'm so appreciative that you guys have the courage to share this hard journey to help others like me.
Why is it ok to ask someone “how can they afford their house?” That’s not anyone’s business!!! Who’s asking these questions, kids?! Don’t feel compelled to divulge everything, your true supporters just appreciate the relationship and love you guys have for one another ❤️
Well said inagree
Oops..should be I agree
👏
That is so true girl! I NEVER ask anyone about their finances. Very rude.
I know, right?? Some people....
There are ways to word these questions which could be a little more sensitive.
My husband was just diagnosed (LBD), and we are Jason and Leslie's ages, so I was going to ask her privately somehow about ways she may have discovered to supplement income (from a VA standpoint or SSI), allowing her to be home with Jason more. I am also in healthcare, so I didn't plan on losing that income, but I will do what I need to when the time comes.
I would never have asked publicly or even expected a public response. I guess it didn't seem out of line to some people 😕
This was so enjoyable. I love people’s stories . (Love the pink vest, Leslie!). Even more wonderful is that you are Christians. Thank you for sharing your journey.
Thank you very much! 💖💖
Love you guys. You are not obligated to answer all questions. Your finances and intimacy are always, regardless of illness or no illness, personal and no ones business. Don’t ever feel obligated or forced into divulging information you don’t wish to share. You are already putting yourselves out there and that ought to be enough. Thank you and take care. ❤️
It's encouraging to see a couple who married so young and still together after so many years! I married shortly after high school and this year will be 20 years
Yall are precious. I love how you gave Jesus the glory for helping you guys through and keeping you positive. My husband is a jokster like Jason and if you are like me, I can tell how Andy is feeling by how much he kids around. So for him to be teasing me is a good thing and it makes me laugh and it looks like yall are that way too. I can relate with so much you say, like the question about resenting each other. When you have been married 30+ years, that doesn't happen when you have grown together and love each other. There is a funny thing I say to Andy, I will say "you're the other half of me, well you might be three quarters". We laugh. And when we say the same thing at the same time, we will look at each other and I say, "get out of my head". Lol. I have empathy for you as caregiver. I am going to put you guys on my prayer list and ask Jesus for complete healing of Jason. He deserves it. Great video!
Wow, I could listen to you 2 all day - so interesting & honest. While you both inspire me I have to say ‘Jason, you are one INCREDIBLE guy. What you have achieved and accomplished ... I’m in awe! Can’t wait for Part 2 (and thank you).👍🥰💕
Our pleasure! Thank you so very much! 💙
Believing with Jason!! He gets better! And I love “don’t compare yourself with others”.
Thank you!. We so appreciate the information and insight that you share, but you are not obligated to tell us more than you are comfortable with - part of your "charm" is how you protect each other; no apologies required. We love you both and your relationship together, there is so much we can learn from you both! And thank you for your service to our country ... both of you! You both made sacrifices on our behalf and we are forever grateful.
So nice of you 💙 Thank you!!!
Thank You For Your Service. Don’t hesitate to not answer some questions you don’t want to, some things are NONYABUS. ❤️❤️❤️❤️
Much appreciated💖
You two are so sweet. Thank you for answering so many questions, it must be weird to tell your story to so many “strangers”. You two are a wonderful example of what a loving relationship looks like.
I’m so impressed that you married so young but kept your dreams alive - getting your educations, following your career paths, etc. Blessings to you both. Sue
Hearing Jason tell about your meeting, his education, military service, and work, one would never know there was anything wrong. God bless you both. My husband has Lewy Body Dementia and rarely talks, but he just turned 80, and that may make the difference. He’s only been diagnosed for three years, but has declined rapidly. Again, I think it’s an age-related thing. You’re in my prayers.
I really enjoyed hearing about how you two met and went on to raise a family while Jason was active military. That’s a huge sacrifice for the whole family to endure especially during deployment. Thank you Jason for your service to our country and to the family that supported you! God bless you Leslie and Jason.
"...or I just get better and everything's fine." Yes! I'll agree with that!
Your story and mine are so similar it’s scary. My husband was Navy. We married in 1989. He left active duty in 1992 and joined the reserves. We had three kids . While we were stationed in Newport, RI he got his masters at U of RI. Thank you for sharing your story. You are an amazing couple! ❤️
Jason and Leslie, thanks so much for sharing your incredible story! We are so blessed to be a part of your lives! You guys are such great role model of positivity! We love you!
Thank you Sharan! We love you guys! 💜😊
The neurologist diagnosed my husband in 2008 as a classic case, and yet it's true that no two cases are the same. We had another eight years together following the diagnosis. In 2014 he began to decline quickly and passed away in 2016. There are so many similarities to your story and ours. This is a wonderful service you're doing sharing your journey. God bless you both.
You two are refreshing.....prayers for both of you.
Thank you! 😊
Libido question, rude, rude, rude!
Agree, so so terribly wrong. I admire you both. Please do not feel it is necessary to acknowledge these insensitive rude people. And may I add Thank you Jason for your service.
I don’t think it’s rude. From my understanding these videos are to inform and let caregivers/spouses know they aren’t alone and to be able to ask questions. She’s a nurse 🤷🏼♀️ if they aren’t comfortable answering thats ok, but I don’t see it as rude.
@@jennyhunter3010 I agree
Yes! Don’t listen to statistics! When my daughter got diagnosed with kidney disease they gave me a statistic sheet. I said I don’t care what that paper says. That’s not my daughter. She’s her own person and we’ll take it day by day year by year.
Love seeing your videos! Keep on keeping on guys!
Yessssss Exactly!!!!
My family member was Not a statistic. What a go ladies!!!!!
Omg...Jason is a doll! I love the banter you two have. Having been married 44 years, I can relate. Btw...I follow your daughters channel...& I have grandkids! She’s so honest & sweet (like her mom!). Hugs~
You two sweet people are so adorable! Some of those questions were way too personal to answer. Thank the Lord that you do have Him to lean on! God bless you both!💕👍🏻
You can tell you both grew up together and you have such a wonderful wonderful outlook on your life! I'm so sure you're glad to have Jason close to you after all those years and days and weeks and weekends apart! It's like God's giving you back the time that was taken away even though it's a tough way to be giving it back! I became fascinated with orchids a few years ago and did some research on UA-cam which is a wonderful place to find out information about most anything! I started to watch a man's Channel and it's called Rick's orchids... He has Parkinson's with Lewy Body so not just Louie body but Parkinson's. He started a UA-cam channel and with the years he had left the ability to communicate his left a wonderful Legacy behind... You both are leaving a wonderful Legacy also... In fact his wife became a nurse so she would know how to take care of him and he shared some of her life as she fought breast cancer and stayed in nursing school and graduated... He's no longer able to make videos and I miss him keep up what you're doing you're so wonderful to listen to I'm see how you deal with what life is thrown at you... you are an inspiration to all of us God bless
Thank you for sharing your story...you guys are such a wonderful couple & have shared so much of your lives together. It’s so obvious that you love each other deeply, & that you’re good friends. That goes a long way to make the journey just a little bit smoother. I’m a retired nurse & I’m glad that Leslie can now stay home. Keep up the good vibes!
Hey Kansas, love Kansas, we lived there for 9 years in Dwight, victorian home!! Loved it. It was due to Military and I owned a beauty Shoo,
Loved it there!!! Love you both, blessings!!!
You handled a very difficult session with grace and humour. I have to say that people sometimes ask questions that do not deserve your attention as they are way too personal. I'm glad you refused to answer them. Peace to you both.
I just adore your energy! The way you two laugh all the time is so refreshing! Jason is always in my prayers and I wish you both the very best! Look forward to your videos💜💜
It’s like God brought this video to me. I’m 41 and taking classes to prepare for Nursing school, which I’m terrified of, especially at my age. My mom has Alzheimer’s and I’m worried about how I’m going to focus on my studies and care for her. Will she even be alive or remember me when I graduate? She is my absolute best friend and the thought of existing in this universe without her seems impossible. You two are very comforting and motivating. You’ve accomplished so much in your lives through difficult situations and you continue to thrive and focus on the positive. I’m a new subscriber. God bless you both. ♥️
The love and respect you all have between you two and God will see you through this. Love watching and hearing you all tell your stories. Thank you so much for sharing. Stay well, stay safe.
Thank you so much!
You both are amazing and inspirational, thank you both for your service to our country. My husband was dx with FTD when he was 49 I was 41. Mark was a Maine State Trooper and SF Medic...with multiple concussions...dx in 07. I too am a nurse, these videos are so selfless inspirational and are a testimonial to your live of each other and Christ. Cannot tell you how much I wish I had your grace. We have 3 sons,oldest is a USMA grad, second owns his own business realestate,etc. Youngest recd his Masters from Northeastern in law. I so look forward to your videos and widh you all peace, contentment,longevity,and health. God bless you.
I love your channel and I love your relationship!! God is so good and we pray for your family!
Thank you so much!!
Thank you so much for sharing your experiences with us. I really am shocked that people ask such personal questions about your finances and intimate experiences. It really is vulgar. Love, positive thoughts and prayers for Jason's disease slowing down and strength and comfort to Leslie and your whole family xoxo
You two are so amazing and beautiful people who have such a big ❤️!! Thank you for letting us in your home and life!! And thank you for all the wonderful information! Jason thank you for your service!! God bless!!🙏
Thank you Leslie and Jason for inviting us into your lives. I am in awe of you both. So very kind, joyful, positive, and strong. It was heartwarming to hear how you met one another and became a beautiful family. Jason made me giggle as always. You and your family are all in my and my husbands thoughts and prayers. When a cherished family member is coping with a chronic illness, it’s time to circle the wagons and be there for one another. I’m so thankful you are able to be home all the time now Leslie. Life is so very hard sometimes. We work on staying in the moment, and realizing that right now...everything is okay. We do not allow ourselves to think in what if terms. This is just how we cope. I’m thankful you both have a positive attitude. It is so very true, that every single person is different, so there is no need to attach labels and time limits. Sending love and hugs your way. So very proud of you guys. Love you! 💕
That is a perfect way to put it! We are staying in the moment! Right now is doable and we still have lots of happiness and good times! We don't let the future bring us down. Thank you Beth for helping me to see it that way. 💖 Hugs!!! 😊
@@ACharmingAbode Hugs back atcha! 💕
Love you guys, beautiful couple. Love your story; I'm 76 years old, lost my love in 2012 to breast cancer. Keep the love alive; I miss it so very much. God's blessings on you both. Mark
Hi there you two. Glad to see you both smiling, happy and full of fun. My father had same condition and we lost him in November. We didn't lose him to the disease we lost him to grief. Because of his condition he couldn't process the loss of my brother in August.(age 50) I have been following you two since you started. Even now during my grief you bring a smile to my face and make me laugh, for that I thank you both. Stay strong you lovely people and keep bringing joy with your videos. Xx
You two are amazing! Married at a young age and have a baby right away...go on to get college degrees and build a beautiful life together as a family...WOW!!! Your lives prove that hard work and dedication/determination can win out over hard times! Praise God for your journey and your willingness to share it all on UA-cam for us!
Loved learning about how you too met, you two were, and continue to be, adorable! Cow tipping or movies, love his sense of humor! Blessings to you both!
My word is nothing sacred! I appreciate you wanting to educate and share with us, but please, never apologize for not answering such personal questions. Somethings are on a need to know basis and people just do not need to know.
Love your videos and your loving upbeat spirit!
Thank you for your willingness to put this content out there. I am caregiving for my mother currently with dementia, and I need this so much because I feel so isolated in this. You guys are delightful and precious people. Your willingness to share this journey is so amazing and I love that it gives me a sense of community in this very isolated place. Getting to see someone dealing with similar experiences is so helpful. Thank you again!
You guys are amazing, and I love the fact that you put your heart and life in Jesus hands! You're both so cute and positive, and uplifting! I think of you often,and you are in my prayers!
I know you guys are very open about Jason. Please make sure you always treat him with dignity. I understand you have fun with each other but there is a fine line between fun and dignity. I am a nurse also for 43 yrs. I do enjoy your channel. I just found you guys.
Bless you both for being so humble as to share your story.
I love that you are both sharing the reality of living with LBD. I am 48 years old and my mother was diagnosed with LBD this summer during quarantine. It was heartbreaking as her daughter to see her struggling and I can only imagine how hard it is to see your spouse go through this and to be living with it. I stayed with my mom this summer and I can empathize with the frustrations a caregiver can have. You can still love your family member and be frustrated with them yourself and the situation all at the same time! People need to realize that and I cannot thank you enough for the information you provide as well as your personal feelings. I would really like to join the online support group if that is possible. Have a wonderful day and stay strong (: -Jennifer
Jason has a great sense of humor.
Thanks for sharing such an intimate part of your life. Wishing the best for you both. So funny you two together!
Thank you so much!
LBD is very difficult for someone not living with it or someone caring for an LBD patient. I had a neighbor who looks at me like I'm lazy since I told him I'm disabled. I've not yet found a way to explain it. The best I came up with is that LBD is the love child between Alzheimer's and Parkinson's. Thanks for the video.
You two are the perfect couple, thank you for doing this. Your positive outlook and enthusiasm is great! Jason, you are the cutest! When you smile 🙂 your whole face lights up- it’s just great! Prayers for both of you.... and keep on smiling! 👍❤️🙂
Thank you, Jason for your service!
This was a gift - thank you
I want to thank you both for being so positive all the time, but more importantly letting people know that everyone’s case is different. Just because you may share the same name of a disease doesn’t mean you share all the same symptoms or even end result. That truly is what people need to realize. I have Lupus and although many people don’t see me when I’m really sick, they think because I’m always smiling that I have a mild case or don’t have it at all. They don’t see me when I can’t move from my couch to the upstairs where my bedroom is. I just choose to be positive and smile and to be grateful for each day I’m Blessed with. I live in the moment and have learned to appreciate each moment, I believe you are helping so many with Lewy Body Dementia. You are a Beautiful Couple who always bring a smile to my day, so I thank you for that. I wish you Good Health and continued success. Best Wishes- Harriet Mullen❤️🙏🏻
That is the sweetest story! "Well, it started when we tried to catch a goat together!"
GOALS!!!
God bless you two!
You two are absolutely adorable! And it’s easy to see that you adore each other.
Thank you for sharing all of this. You are so positive and upbeat and Jason has a great sense of humor!
Thank you for sharing this so openly!
You guys are such an inspiration.
Thank u guys for your honesty! Blessings to u both! 💖🙏
No doctor should ever let their own feelings prevent them from telling their patient exactly what their diagnosis is and how it was determined. You shouldn’t be seeing it for the first time on a form.
Anyway, you’re great and I’m sure you help people to feel more hopeful. My sister has Alzheimer’s, as did or grandma, and I dread most the day when she no longer knows who we are.
You two are such an inspiration! Thank you for this video.
I love how both of you have a great sense of humor and infinite patience! I also love your home decor, you are so creative!
Yes, get better Jason!👏👏💜
I love how positive you and Jason are and that goes a long way. I just love your channel!!!
This was very well presented, thank you both for sharing with us. Jason, thank you for your service, I have a son in the Air Force, he's stationed in Tucson, Arizona, this will be his 5th year serving. Leslie, thank you for your service as well, as a nurse, especially during the pandemic. Continue to stay positive, so much healthier than being a negative Nancy.
I truly love your family. Love how you are so honest, transparent and hopeful. My hubby and I are praying for you all. 💕
Me and my husband had the same start as y’all and we now have 4 married children , 8 grandchildren and have been married 45 years. He was diagnosed with cirrhosis of the liver 3 years ago and we deal with brain fog due to ammonia build up from the liver. So I know your struggles. Love your honesty and of course your sweet spirit and decorating talents. Love to you both.
I love you two, you are so happy and care about each other soo much!
Just love you guys so much! 💕
Stay strong and enjoy everyday! Praying for you both. You are a joy to watch.
You both just warm my heart 💕💕💕
This Mainer thanks you for your service and thank you both for sharing.
I just enjoy you two so much!
I am watching from Bangor, Maine. Thank you for your service. I love hearing your story.
Thanks for both of you doing this Q & A. I love the pictures you shared over the years and it was so interesting to hear your journey so far.
Thank you for sharing your life and story with us. I was caregiver for my Mom for her 5-1/2 year battle with Lewy bodies dementia except for the last year of her life, when it became too difficult for her to care for her at home without assistance. Mom, of course, was much, much older than your husband is. My Mom had had no head injury or anything. The only thing we think might have started the LBD was Mom had tripped over my brother's new puppy on its leash and fell onto the cement patio of her home and completely shattered her hip (she was 80 at the time, but in awesome physical and mental health. She walked 3-5 miles every single day, ate well, was in great physical shape, and her mind was 100% sharp), then had to undergo a total hip replacement. Within 3 months of surgery, the signs of dementia began. One neurologist thinks that LBD in the elderly can be brought on by a traumatic injury, then having to undergo a long surgical procedure, and the anesthesia used somehow triggers this disease to begin in the brain. Mom also never had Parkinson's disease and didn't develop any signs of Parkinson's during her 5-1/2 year battle with it. She passed in September of 2019. The last 2-1/2 years to 3 years of her disease were the worst and I wouldn't wish LBD on my worst enemy. Dad had passed 8 years before Mom got sick, then in November of 2019, my brother was very out of the blue diagnosed with Stage IV lung cancer which had spread to his brain, pancreas, and liver and he died 7 weeks after he was diagnosed. It's just me now out of what once was our family of four. I miss having my family so much. God bless you both. I pray that there is a cure for this disease someday very soon. (Also, on a previous video, you mentioned about your husband's sleep being disturbed a lot, which is very common with LBD because of the REM sleep disorder associated with it. One thing that the LBD Organization recommends is the time-released version of melatonin - it helped my Mom a lot for the first couple of years for sure - she was on the 10 mg time-released melatonin that we just purchased at a vitamin shop. Not sure if anyone has mentioned this to you before. )
Great video!
Y'all are so sweet and I appreciate you sharing your story with us all! I'm praying for you both!
I can't believe some people ask how could you afford the house!! that's very personal and none of their business. Add to that the libido question, even though it's legitimate medical question, but most people not comfortable talking about it!! thank you guys for your courage anyway and sharing this with us!
Your positive attitude is an inspiration to me. God bless you.
You both are a true testament of your faith, being positive and loving each other in good and difficult times. No one can control circumstances but we can diffidently control our attitudes and you both do that so eloquently. Thank you both for having the courage to share your journey. I think this is absolutely a blessing to others to see such strength and
Love. Prayers and encouragement to continue your faith walk.
Thank you so much for sharing!!!!!
My husband was diagnosed with Alzheimer’s when I was 60, he was 67. He had always dealt with IRS, property taxes, managed the money, etc because he wanted to. I too am a nurse and I homeschooled my children through high school. 3 weeks after my husband’s diagnosis I had a neurological event-undiagnosed. I was a mess and had to take over everything! I wish I had done those things previously. I too have the fuzzy sensations in my brain and I get brain fog among other things. I saw on another video that Jason has myoclonic jerks as I do. Valproic Acid literally almost stopped it. They were threatening to take my license away. That drug has been a huge blessing.
I do enjoy your videos.
We rely on Jesus completely also.
You all and your positive attitude are an inspiration and God bless you❤️
God may heal you, my dad was a miracle twice. You guys are awesome!
Thank you for all the information. Bless you both! 👍🏻
Bless you both for sharing your story and positive view of life with all of us. You are inspirational in a time where the world needs more inspiration! Your response to questions is candid, honest, and VERY appropriate when you choose not to respond - again examples to live by.
Thank you so much 💖😊
Loved hearing your story. I'm glad you drew boundaries on questions that were too personal to have been asked. You two are fun, authentic, genuine and inspiring. Not only does my house look better thanks to your innovative decorating ideas, but my soul feels better too.
I’m really enjoying your beautiful channel thank you so much for all the insight
You'll are so cute and adorable! Thank you for taking the time to answer our questions I really appreciate that. Love and prayers 🙏💕🙏💕
Daily hug for you and Jason from New Hampshire!