LIVING WITH LEWY BODY DEMENTIA Ep.3 | Muscle Rigidity and Sleep Disturbance

[@kathykeene2092]

It’s wonderful of him to take the things that are said about him, as an observance, rather than a criticism. I am sure he feels very bad for upsetting his wife and it’s really great that she can express what she is feeling. In the future, he might not be able to rationalize or hear about the things that he does. The love between the two is a beautiful thing.

[@reopat14]

I think his intelligence is a definite asset in this struggle.

[@ceejellis1]

I think that’s one of the most difficult things about dementia a persons prior intelligence does not help. My mother was an executive secretary and accountant and her last major job was keeping books for a billionaire. But once the dementia started taking hold she forgot how to use her computer she forgot how to pay her bills and I would show her over and over but she would retain none of it.

[@Me-ru6cl]

@@ceejellis1 very true Cathy..I hope your mom is well and so sorry you are going through this.

[@pam164]

He has a lovely smile.

[@droL_si_suseJ]

Jason, when I worked with you 8-9 years ago you were a master at multi-tasking. Even a a retired Chief I learned a lot from you. Also, we have to joke and laugh about ourselves and life. Your last comment is one of my favorite lines, from Shawshank Redemption, when Andy and Red are talking in the prison yard. Your Christian brother Bill

[@ACharmingAbode]

Bill Steinbrueck Jason says thanks! He hopes things are going well for you!

[@ItsKelsiesLife]

Awwww! The ending! Be still my heart! I love my parents! :)

[@ACharmingAbode]

He loves me 😘😍

[@tiffanygaydos8997]

Yes, such a lovely loving heart bond they have. You both are inspiring.

[@sirenna3416]

@ItsKelsiesLife you’re lucky indeed!

[@louiseclark4732]

Do you pray? I believe in Jesus and I pray to him. I think it will make your burden a little lighter and thank him for guidance and patience. You are a lovely couple. God bless!

[@lynnelofgren1644]

Hi Kelsie! I have been following you on your vlog for a couple years and now i have discovered your Mom's ! they are adorable!!!!!!

[@beautylover2105]

Hello dear one. My husband died two years ago with Lewy Body Dementia. What a ride that was! It can't be escaped! May the Lord watch over you.

[@jeane561]

You two are such a sweet couple and I hope this is helping to share the ups and downs😊 Praying for strength for y’all❤️❤️❤️

[@freedomcakes]

We call it “crazy legs”. We sleep in separate rooms now because it keeps me awake, but still have cuddle time in the mornings.

[@lauracleaver6176]

You are sharing so much great info. ! I am a CNA & as CNA 's we don't have this kind of time to always remember all of this info you have shared openly with families in your different episodes of your journey !!!! Its is well balanced with alot of Love & Humor & Honesty! Thats priceless !!!!!!! As CNA's we meet our clients where they are at, at that moment onwards in their journey & see & laugh with their humor moving forward in the journey. Again what you are doing in showing this is so priceless to other families who are beginning or in the middle of their walk with this ! Stay strong, my prayers are with you !

[@DJMeCa]

It breaks my heart to see medical issues happen to people who are so loving and free of heart. Wishing you both strength, and prayers.

[@leigho6658]

You two are sweet together, and I imagine this is the hardest part of in sickness and in health.

[@celynegarcia1757]

Thank you both for sharing your journey with us.

[@defleppard-lover6298]

Prioritizing Transitioning Slow and steady ....yet still stays comfortable in your comfort zone.

[@carolyndillard3369]

Keep looking to the Lord and he will help you and keep loving him.

[@adelelarkins5921]

Since this process was related to a military related brain injury, you should be able to get a VA advocate to help get you 100% disability qualified.

[@ACharmingAbode]

It's in the works! Fingers crossed!

[@NYCisland]

They talked about that in an earlier video. The problem is that injury didn't present problems until much longer and the VA (and any insurance company) pushes back against connecting an incident years before a symptom or diagnosis appears. It's never easy identifying the moment a trauma occurs. It's like saying a cold you have 5 years ago is the reason for disease X today. Insurance companies (and the VA) work hard to reject any claim that isn't an obvious connection (car accident - broken leg). It is SO difficult to keep at it and digging up evidence and medical proof when he wasn't treated for anything at the moment.

[@thomasbaye4805]

Good luck everything with VA takes a bit .

[@MYTAISLIM]

A charming Abode, VA will put him on Disability. And getting disability through the VA instead of through SS. He will receive a much larger amount. However they will not pay a family member to care for their own spouse or parent or child. However the Health and Welfare department in every state has a program that will pay family members to care for their own. Families. However the are a few of the states that won't pay to to care for him. If you post what state you live in. I'll do the research for you and post the link here. I live in Idaho. They pay me to care for my daughter and mother. But they won't pay me to care for my husband. However he is still able. To take care of himself.

[@NYCisland]

@@MYTAISLIM My sister is in MI and I did check with Medicaid and the won't cover family care givers. It makes no sense at all since being in a nursing home is everyone's definitely of hell. But, I am open to hearing anything you know that might change the situation. The other part though is, how many family members can afford to quit their job (and lose their own medical benefits, paying into their own retirement plan, etc.) to get pay super low wages to care for a family member 24/7? It's horrid how we treat elders or anyone who can't take care of themselves (plenty of people who aren't "old" and need 24/7 care).

[@greeneyedgypsythriftsguidr7675]

Jason, you crack me up with your antics.

[@susangisclair2645]

You two are so adorable and giving very helpful info for others, sending you prayers, stay strong

[@ACharmingAbode]

Thank you! Will do!😊

[@Mrs_B]

@@ACharmingAbode ❣

[@nemarkle]

I love you Jason!!! You are fun, loving, handsome, transparent and just down right adorable! Leslie is amazing too in so many ways! I’m so glad that God directed y’all to me! What a Blessing you both are!!!! Thank you for sharing your life, your home and your amazing personalities with the world!!💖💖

[@jandoherty9766]

You are beautiful and Jason is a handsome hunk. I’m so happy that you have each other. You are the perfect team. The love and support And respect you have for each other is very heartwarming.

[@yowwwwie]

I just found you guys an hour ago and have been catching up w Jason's symptoms. You both are so wonderful. Love, Y

[@n.a.garciafamily]

Me too! Just a bit ago. Amazing people ♥️

[@oceanark77]

I'm 34. A CNA & I think my mom may be getting this. Thank you for making these video's.

[@nelliestephens3856]

I also have DLB. Very good explanation of some very difficult symptoms to explain. I have very similar symptoms.

[@elizzievb]

I have never seen a cuter couple. Love you both and my heart breaks for you. Jason is just so adorkable! So intelligent and funny. Hang in there sweet peeps! ❤️❤️🌈

[@sarahwood3888]

Jason’s intelligence really shows! Love his humor! A great thing for you to be doing this and maybe helping others in a similar situation. And, for people like me to understand what goes on in his mind, and how to treat others with this kind of disease. Keep up the good work!👏🏼👏🏼

[@lanajackson3730]

Came to your channel because of Misty Queen Beez Vintage. I saw the video of you and your husband. How heartwarming you two are. I will put you on my prayer list. God bless you both.

[@ACharmingAbode]

Thank you so much!💜😊

[@bradmyers7109]

It is amazing how will Jason communicates his thoughts when he speaks. I would not think that he has dementia at all if I was not informed of it beforehand.

[@judymooney2993]

Jason, thank you for your service and willingness to share the results of that dang mortar that changed your life. You two are wonderful and I appreciate you sharing it with us.

[@smithacres1742]

Too funny! My family hasn’t been affected by quarantine either. Lowe’s and Walmart were our previous go to and... still is 😂 #homebodies On a more serious note. Care givers never hear this enough. You do an amazing job caring for him. Be sure to care for yourself along the way as well! Stay strong ❤️

[@amandahhhanne]

Love his dry, witty, semi dark sense of humor 😂😂😂these are the types of people I vibe with! God bless you both. New subscriber here ❤️❤️❤️

[@ACharmingAbode]

Thanks so much!!

[@teresawright4424]

Thank you for sharing your journey. K-State? I live in Kansas.

[@ACharmingAbode]

Yay! So do we!

[@SailorGal7353]

I am so sorry you and the rest of your family are going through this. Thank you so much for your honest portrayal of what a person, and their family, might go through once someone is diagnosed with this disease. Thank you both for your spirits, and your willingness to help others, even during this difficult time for you. You both are blessings!

[@highspeedmom2012]

I followed Joe Joe with his moms journey. Thank you for sharing your experience ❣💚💜💚❣

[@WDBsirLocksight]

Why am I here again...? Oh yeah because KZbin didn't send me here randomly. lol Love your personal life capsules. The two of you are glowing with God's glory as a foundation.

[@patriciadiaz2407]

you guys are so great. Learning lots. Mum had dementia. I also work with residents that suffer from dementia. Thank you and God bless you. INSW. Australia

[@kathleenc8783]

💚 I replayed the, "you just wanna be done." "I do." clip a dozen times. So beautiful.

[@Fuzzamajumula]

I'm so glad that you two get along so well. Good communication is key, I think.

[@travelingjean5694]

Thanks so much for sharing! It's nice to know I'm not the lone ranger when it comes to the goofy sleep patterns and the inability to focus to complete a task. Leslie, you're an angel for your unconditional acceptance and love. Jason's one lucky guy. I hope that I can accept constructive criticism as graciously as Jason does. God bless you both.

[@larrybutel750]

Thank you for sharing your journey , from a fellow K-State alumna in Kansas. Praying for you. EMAW

[@marymcnellis5311]

I have watched your videos and have watched someone else’s who it was mother and son. I think your very very early in the process. It’s going t be more about him then you later. My sister went through this. I’m glad your laughing so much . I hope your making more videos for your kids. There’s a long long road ahead. I’m glad your not dwelling on that. Over time it will be all about him,because fear of what’s really happening hits hard.To reassure him continuously.Keep laughing as long as you can.I really hope you can care for him till the end like my sister did. Because no one will do it as well as you.may god give you a very long time together.

[@laurasamaniego5274]

Good morning beautiful people! I’m from Arizona and I watch all kinds of decorating videos just happened to. One across yours! I’m like addicted to watching you two. I struggle with anxiety and couldn’t even imagine with Jason is going through. Kudos to you and I have you both in my prayers. God bless and keep doing these videos .

[@patbass7257]

You two are so good together. I couldn't imagine you with anyone else. You both have such awesome smiles. I pray you never lose them. I pray a hedge of healing and peace around you. God bless.

[@breej3055]

Sorry you both are going through this life changing experience

[@dillydalie11]

Love you both.. and glad you are documenting your journey.. !!! Hugs... to to both...

[@margrittorres278]

Hi guys! I stumbled upon your videos, and they are so informative! I have M.S., Sclerederma, Menieres Disease, and Sarcoidosis. Before getting sick, I was a Registered Dental Assistant. I love how the two of you interact! My husband is my caretaker, and we too use humor and Love to get through our tough days. Keep up the good work! You will be in my prayers!😘

[@fifthgencanuck8663]

You are so right about not being beholden to everyone as far as personally explaining your life as it is and I think your videos are in fact a very thoughtful way of sharing what’s happening in your lives. It’s incredibly interesting to me to see your insights, both of you, and I find myself nodding my head a lot with some of the symptoms that my dad has too. Unfortunately he doesn’t have any understanding of what is happening and so I find myself having to keep from being the “memory police”. I love it when you two laugh together, you both just become luminous and the incredible bond and love you have for one another is truly a beautiful thing. Sending you lots of love from Canada 🇨🇦❤️

[@bethwolford3652]

You two are a great couple and very brave! The unknown can be so scary in situations like this, so having the attitude to get on with living is indeed life affirming. My husband and I are 73 and he was diagnosed with Parkinson’s 3 years ago and I have Lupus, so we are trying to do the same thing! Love those grand and great grands!

[@donnagrosch4519]

You two are just the sweetest couple. Hang in there and keep the videos coming.

[@jamjames1971]

Hi to both of you my neighbors from Kansas. I'm in st.louis. really enjoy your content

[@jodygoodson6086]

I love that he was DONE! I've worked with a couple of people whose diagnosis changed over time or remained muddy all the way through because Lewis Body can present in some people like Parkinson. The movements in sleep, sleep irregularities and nightmares have been major. One person I worked with had such vivid and realistic hallucinations it could be extremely difficult to ascertain that it was an hallucination! We did develop code words (like you mentioned) so that if he was going through a hallucination we could try to break it! Extremely confusing for all involved. Thank you both for doing these videos! For me the best part is showing that Jason is still Jason (like his joking at the end) which I think will help some people not to act differently around someone who is going through this. And his joking about death has been so much of my experience and I think it takes people back who haven't experienced it.

[@sharonkreger2199]

Thank you so much for sharing your lives. We can identify with so many things you talk about. Also, the K State shirt is very familiar with our family. We live in Ks. And, we have a daughter who is an RN and worked in the specialty baby care. May God cover you with patience and love in this trial.

[@kakiehumphreys5150]

I love to watch y’all. You are so honest. I see that Jason is wearing a K-State shirt on. My brother is a retired history professor from K-State.

[@kathleenoconnor4158]

I am must starting to go through your videos. Loved that Jason was quoting Lincoln and that he's doing exciting things and still wanting to learn. That's great to see and there are studies that indicate that such behavior can help slow some of the onset. Get out there and enjoy life! It's too short for all of us!

[@kathleenoconnor4158]

The previous comment is regarding Ep. 2. But, I'm glad you emphasize that this isn't just a memory disease. That's important for everyone to realize. Most dementias are not memory diseases. They are much more than that.

[@karenbortolin7611]

Thank you so much for the help. The code word is absolutely a great idea. I will use it with my husband. He has a severe front lobe brain injury, very similar to Lewy Body, with a slower progression. Your videos help me so much .

[@pdaly8956]

Thank you for sharing your journey. Jason is charming - love his smile! I can only imagine the struggle. Wishing you all the best.

[@bettymorris8841]

You are just the sweetest couple! Jason seems to be an ornery guy, which is usually so much fun. And BOY how he figured out how to get the video ended:) I laughed so much. Thank you from the bottom of my heart.

[@lyric8006]

You two are such bright stars. Bless you.

[@tammyoneal7483]

You guys are opening my eyes more and more! Hoarding! We are human and can’t help getting frustrated 👍 But I’m just thankful for each moment ❤️

[@wilmarhinehart8111]

They both have such a sweet sense of humor!

[@bettythompson9604]

My husband has dementia and also jerking legs at night. His Dr prescribed Valium to take at night and it has been a big help

[@karenkirwan942]

Betty, Yikes! Valium is a bad choice for Lewy body. It can really worsen cognition.

[@1life-longlearner]

Awww...I love the ending of that video. So much love there! Praying for you guys. Hang in there. Just discovered your videos, and going through them in chronological order

[@marylenhastings6533]

I admire your determination to follow through with these videos to help others. Sweet and funny ending!

[@suephillipsendoflifedoulas7328]

Thank you both for sharing what you are experiencing. I am sending strength to you both.

[@conniedykes7225]

A beautiful couple with so much ❤️ between you both. Hugs from Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿🙌💐🥰

[@shirleyledbetter4366]

Going through your video, thank you so much for sharing!!!!! My husband 57 you are helping me to understand much more

[@shamallgraham8410]

I am praying for your strength, what you're doing is amazing and God will reward your efforts. My grandmother has dementia and I am heartbroken and just....

[@ACharmingAbode]

I"m so sorry to hear about your grandmother. Sending you big hugs and prayers❤

[@lindawillis9460]

I love you two. You're such a great couple. Love to watch your channel!

[@AS-cu3ev]

I have two kids with Tourette's syndrome and I'm struck by the commonalities (mostly that people think body/vocal tics when they think Tourette's but it's an 'iceberg' syndrome, meaning there are so many co-occuring conditions and issues under the surface.) OCD, anxiety, ADD, executive functioning disorder- I empathized with your example of executive functioning- yup! It's like they are stymied by the task at hand and view all aspects of it as equally important and so they...freeze. And accomplish none of it without someone else helping to organize and 'chunk' the aspects of the task into bite-size pieces.

[@kimelliott7262]

I think the laughter and good nature between you helps during the challenges

[@denisehoehn1853]

I just love you both. Such a inspiration, to keep smiling when times get tuff.

[@debbiecapra3557]

Go Wildcats! I went to Kstate. My husband has a brain injury and this is very helpful to me! Thank you!

[@ACharmingAbode]

I"M so sorry to hear about your husband I"m so glad you found this helpful! Our daughter went to K-state so we have lots of shirts to represent!

[@juju1660]

I'm praying for you both I feel like part of your family. Wish I could talk to you in person.

[@darleneDered]

Thank you for talking about the symptoms that's the info., I'm looking for my legs do the same I get up also & come to living room n press my feet on the sofa. I don't have tell sleep. My muscles do the same as he is experiencing. Also problem solve siduation is the same I get overwhelmed & I've never had that. And I stop doing what I was doing. The fisleeping isxation thing I also have. I'm also very stubborn. I never know how I'm gone to feel like my mood or being tiered so I can't make plans. Thank you again your both really helping me with all the information.

[@tomvalveede6808]

LOVE you both. So very brave to tell your story. I pray that you will be a long time before it progresses. A joyful couple both with Beautiful faces and smiles. May God Bless You Both! A KU grad in Kansas City, who truly admires you both! I have Epilepsy, and am now having problems with short-term memory. Yesterday, l was freaking out, l just could not find my right foot tennis shoe. I looked, and thought, no one could have gotten into my bedroom last night, it should be there with the left. I'm thinking, maybe l got up in the night and forgot. After searching my bedroom for a while, l sit on my bed. And as l am sitting, l just happen to look down. And there is my right foot tennis shoe, Already on my foot! Creeped me out! But, nothing you can do, just smile and be glad that the shoe wasn't lost after all! Good Luck 🍀

[@hartdowney9388]

Thank you so much, very helpful

[@krisriekenberg2640]

I love your Wildcats tee shirt!

[@FragrantJewelsbykim]

Your husband looks just like a reporter for the East Idaho News KZbin channel. His name is Nate, any relation? I came by your channel looking for information on Lewy because we just lost my sister in law to this. I love your channel and subscribed for all your creative decorating ideas and your willingness to show the good and bad days of Lewy!

[@sarahsparks3818]

You probably have already discussed this, but talk with the doctor about Seroquel for the anger and sleep issues. Also Molly’s Movement on KZbin and Positive Approach to Care are great resources that might come in handy down the line. I’m sorry you’re going through this. I just binged all your dementia videos. They are very educational, especially since most people only have experience seeing elderly with dementia. I think that’s where a lot of stereotypes come in. It does depend on the type of dementia though. My grandpa had vascular dementia and most of the time he was normal, but then could say really mean things like you’re fat or ugly (when the person isn’t either at all). You are a strong lady!

[@carolledger6431]

You guys have the best relationship!

[@thecatwoman6496]

Jason is obviously very intelligent. How does he cope with knowing he is in cognitive decline? It must be so hard on you both. Bless you both🙏❤️

[@garlandfraley734]

Try not to dwell on what was the thought process ...going from above average to having difficulty makes it harder. Being a nurse helps but maybe you're expecting too much of yourself. Love and paryers.

[@jenman1293]

It's so wonderful watching you two Thanks so much for sharing your journey. ❤

[@coloradolover5343]

Go wildcats. Love your K state shirt. I’m from there and wish you both the best. I’m an RN and understand the dilemma of caregiving a husband. Best wishes to you both.

[@willowwillow1969]

I think I got a cavity watching this, cause you two are so sweet!

[@lisalisa13green]

Is it periodic limb movement disorder, restless legs syndrome, or akathisia? I have all three from a common pharmaceutical, plus other movement disorders. I am so sorry he does that. Before I was diagnosed, it not only messed with my sleep, but it messed with my spouses. I had no clue that I had PLMD until it was found in a sleep study. Thank you for sharing both of your stories. You two are amazing! ❤️

[@harrietmullen936]

You two should have your own reality show, but in a good way. I almost forgot you were documenting Lewy Body Dementia, because you both are so entertaining. When you were describing how you now need to figure out how to break things down so he could finish stuff. It almost sounded like my attention deficit. I know it’s a part of his condition as to why his lack of concentration is being tested, but you should ask his Doctor if they have ever tried to add an attention deficit drug to possibly help with this new symptom that he is presenting with. Let it be known that I’m not a Doctor. I probably need to keep my thoughts to myself, but I’m sure you know that you two are so easily liked, that you almost feel like we are friends and can just throw thoughts around. Best Wishes ❤️🙏🏻

[@Grmstrs4evr]

My husband has had cramps like that most of his life. Pickle juice or salt works wonders. God bless.

[@mtnjhutch]

Tonic water helps a lot, it has natural quinine in it.

[@Grmstrs4evr]

@@mtnjhutch pickle juice or salt work great as well, thank you.

[@karenkirwan942]

Something called neuro mag helps as well.

[@debrashaw9130]

You two are priceless! Go K-State!! 💖💖💖🌹🤓

[@lizziandlewy8803]

What a great way to end the video. 💞 ✌

[@mandyaldridge457]

What an amazing couple to share something so personal. I am on this journey too with my father. Liked and subscribed Jason and your lovely wife. Keep safe and keep smiling 👍👍👍❤❤❤

[@ACharmingAbode]

Welcome to my channel! Thank you so much for your kind words! 😊

[@henryjacobs3390]

I'm from Kansas . I see the K State shirt! Go Wildcats!!!

[@jocelynhenkel4]

A charming couple you guys are. Keep up the good work. Don't despair you are doing great..did you think maybe you could use vitamins and minerals?

[@MustangSally7259]

Love your sharing.... it will surely help others going thru it..❤❤👍

[@mariaellens2082]

Say a rosary together it’s a powerful weapon against evil. Jason is in my prayer ❤️ what is your name beautiful?❤️

[@ACharmingAbode]

Hi I am Leslie! Thank you so much for your kind words and prayers! 💜😊

[@kenkarentwo9946]

together long enough you finish each other's sentences AND you tell him to tell us then you end up finishing it for him instead.... married life :) I found myself waiting (sometimes too long) for Dad to say even more after he'd pause mid sentence - mostly because I was fearing the day he'd no longer be there to say anything at all. Thanks for sharing. Being overwhelmed during projects is a norm around here w/ ADD and OCD - fun, huh? - having someone give some structure is great.

[@queenbeezvintage9138]

Wow, you both are so amazing! I am so touched by your story, thank you for sharing your journey with us. I will be keeping you in my thoughts and prayers, fingers crossed you guys will be able to hit the road soon!❤️👑🐝

[@ACharmingAbode]

Queen Beez Vintage Thank you!! ❤️

[@jennienorton2177]

Ive been following your story thank you for sharing praying your family , just an idea but would a weighted blanket help at all for his legs or maybe bring him comfort during the spasms

[@Karen19820]

I don’t have Lewy Body dementia but my dad did. Yet I have the same problem with executive function. That’s my whole life. I noticed it when my son was 12 and could complete some task quickly that took me hours or even days. We both have high IQ’s and had highest honors in school. I have been diagnosed with a Neurological disorder that causes me to wear out and get overwhelmed faster than I even used to.

[@saranewell1238]

You two are just adorable!

[@TH-eb5ro]

Persons with ADD have executive function problems, perhaps some of those things would help. So agree with the stages on things and hoping the videos will also help with things aside from being good memories. Don't get discouraged by people thinking things are a certain way, they may know someone who was like that, they don't know how Jason is doing.

[@PrettyPlusandProud]

You guys are precious! Love your videos!!