LIVING WITH DEMENTIA EP. 3 | MUSCLE RIGIDITY AND SLEEP DISTURBANCE
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- Опубліковано 4 жов 2024
- LIVING WITH DEMENTIA EP. 3 | MUSCLE RIGIDITY AND SLEEP DISTURBANCE. 4/28/20 Sharing more of Jason's troubles at the beginning of this journey.
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Jason’s intelligence is so evident and his ability to recognize and describe his challenges is just amazing. Love you both so much.
My husband has Parkinsons and we now sleep in different bedrooms which has made our sleep so much better. We still cuddle in the morning, depending who visits who, but it has helped our relationship immensenly.
As a survivor of a TBI (military veteran) I can really relate to what Jason is going through. But then I get angry at the world, or myself (not a loved one) and it's like a mental Short Circuit. Leslie, you love him to pieces and want him to be your normal, but sweetheart, he is on another path. He doesn't like it and he knows it is an irritant to you, but it's not what he wants to do. Love, love, love is the answer. Be healthy, stay safe and many blessings, Morgan
Riding the wave rather than fighting the tide is sooooo much easier said than done. This is truly where you depend on the Lord minute by minute. I pray you continue to 'stay in the day'. I pray the Holy Spirit continue to give you wisdom and strength.
My dad is in the late stages of Lewy Body Dementia. I've watched the slow progression. If it's any consolation, my dad still has a keen sense of humor and we can still redirect him most of the time. Sleep has always been a huge issue! Very unpredictable. Hang in there! ❤
Hi you gorgeous couple ❤😘👋I’ll be here! Love podcasts!
My brother has dementia and had 2 strokes. He's not able to communicate but knows what is said to him. He answers yes to most yes or no to most everything we say to him. His right hand and leg shake a lot. He was diagnosed about 3 years ago. He is in a long term facility because he has no family except me and I can't take care of him at home. Fortunately he lives 10 minutes away from me and I am able to see him everyday. Thank you for giving me information that is helpful. God bless you
That is called perseverating on something. When a person can't let something go. They continue to focus on that thing.
You are the most precious couple! Leslie you are an amazing woman & Jason is a wonderful accomplished man. Even with his condition he has a great command of the situation & articulates it so well. I pray for you both & will always be a supporter of your channel.
Is he on Levodopa? That has helped me with the running legs. My husband has to help me with projects but as I ran my own company I don’t take interference easily. What you say about that is so right. I’m now working on my garden and my husband knows 0 about gardening so it’s difficult. I sleep a lot. Love to you both! ❤
Hi Leslie & Jason, I've been following A Charming Abode for a year or so now & learning so much about LBD. Can you tell me what the very first signs were that indicated something was not right w/Jason? Another ? I have relates to the leg jerking...Is that a symptom or side effect of LBD? Thank you for educating us & keeping such a positive & loving attitude toward each other, during the challenges you face every day. I'm grateful that you've started this new page that will focus on your journey with LBD. Blessings on you both as you navigate this challenge! 💗🙏
Thank you for “all” your videos..extremely informative. I got my husband who has LBD to watch your last 3 videos, he was glad to have had someone who had some of the same symptoms and it helped, he’s not alone on this journey. Looking forward to your next video. Thank you both for sharing your journey, you definitely help all of us watching.
Jason Your self awareness is amazing right now. Have you tried writing down the task so he can reread it or ring a bell and that means listen to me? These probably are things you've tried or won't work. I wish I could help out.
I think it's great that you set a different channel for this subject. I can't tell you how helpful it is. How can we support you? I feel like you could use some support but I'm unsure how. Like I've told you before - we are dealing with Alzheimers with a family member. It's very difficult especially for my husband as it's his relative. He needs to process everything after a hard day. I hope you have friends to talk to!!
Your so right as to say everyone is different. My husband is in late stage either LBD or Young Alzheimer’s. He’s aggressive and meds didn’t help. He’s in ICU with high CK levels. They’ve lowered them and he comes off breathing tube tomorrow. They didn’t do anything for the behavior and am scared if I bring him home he might hurt someone or himself. He’s going to a memory care place. It’s terrible he’s 55. We’ve been fighting this for 18 years. It was just labeled as a different disease in the beginning. Now I look back and it all makes sense. TFS ❤
I completely understand your situation. Thank you for your honesty. I have been on this road for 18 years too and it is exhausting. We still manage at home (with caregivers) but I see a day when that is no longer safe. I wish you the best!
@@jeanmensendick2476 He’s in a long term hospital ICU for now. The doctors are saying it’s LBD or FTD or Young Alzheimer’s or possibly a combo of them combined. They told me he has to be placed in a long term care facility and he wouldn’t be able to come home because he might hurt himself or someone else; if he makes it out of the hospital. He told me years ago he never wanted to be like this and he’d rather die. ❤️
I can’t believe I forgot about this channel. I’m now subscribed ❤
Congrats on your new channel. I hope it really takes off for you. Thank you for keeping us up to date and best wishes to you both.
Maybe a vision board for Jason's goals for the basement will work like an instruction manual. The board could include visual examples of the final stage of the room, placement of furniture, shelving, etc,. Along with basic guidelines written on the board telling where things will be stored and how.
Have a peaceful and easy week everybody 👋✌💛
This channel is going to help me s much... one question....what were the first signs Jason had that made you think something was off.
Keeping you both in my prayers.
P.S. and thankyou so much for numbering your episodes
We lived this entire scenario, for several years. Prayers to both of you. I lost my loved one late February….
Here I am, still watching your videos. At the end, my loved one, became borderline aggressive…. So very hard…
So sorry for your loss, Cynthia. It is a very difficult road to navigate with the one who suffers from dementia.
You both are the cutest couple ever.
Thankyou for the updates + my hubby is like Jason's biggest fan! Me too
Leslie, you are such a sweetheart, I dearly love you both xoxo
Love the K-State shirt. My dear friends are in Wamego KS and are alumni of K-State. Thanks for all you do about the Lewy Body education.
You totally described what my husband goes through periodically with the muscle rigidity. His hands will just clench and I have to try and open them because they hurt so badly. He doesn’t have dementia though his dad did and his moms mom had Alzheimer’s. We have not found any doctors that know what this is. It’s so random and very painful. Thank you for sharing your story with us and know you are both in my prayers. God bless you both.
The executive dysfunction is the same as in ADD or ADHD as well as "Brainfog that is very common in many different autoimmune diseases like rheumatoid arthritis, MS, Lupus, Ankylosing Spondylitis. It really is a pain to live with, day in and day out, even when it isn't progressive. For someone like Jason, who is obviously used to being able to think quickly and expansively about allot of different things at the same time or in quick succession it must be super aggravating, depressing and even frightening. I know some people with autoimmune Brainfog find different medications that are useful in ADD and ADHD does help them to focus their attention more easily. Unfortunately it can also be detrimental to people that tend toward hyper-focusing, because the clarity that can come from the use of medications, an also tends to make hyper focusing worse. All the best going forward.
JASON!! 😂 That "hello" was horror movie worthy scary!! 😂
The reason for the lack of sleep, I was told in our dementia support group, is that they never go into REM sleep. Also, naps are often needed after eating due to blood flow to the stomach and the fact that they never go into a full sleep. My mother-in-law has Alzheimer possible LB. Her brother definitely has it.
I LOVE the basement story. So true about getting overwhelmed. Leslie, you will have to assign him a task, then watch him do it, and see exactly where Jason's tripping points are. Once you've done that, you can just remove the obstacles and help the project become doable for Jason? It's what care takers do to help people with developmental disabilities be productive.
What a great smile he has.
You are music to my ears I have been all over Google I need examples of what this dimension can do to you and affect your spouse and your daily living I am absolutely addicted to to these things you're posting I'm sorry I don't have good words I've recently been diagnosed with early onset alcohol dementia I am 45 years old and turns out this has been coming on for years maybe 5 to 10 years
I loved the very end. Y’all are so sweet together!
Hi Lesley and Jason!You two are adorable .It is wonderful of you both to do reviews and updates on this illness and how Jason is doing.God bless you both .You are very sweet people!!😁🙏❤🙏🌷🦋🌼🌹🐞🌻
Good morning you two!
Jason is to much 😂 Y'all got this 🤗🥰
Oh my. I have issues with being overwhelmed by projects around my house so I have to focus on smaller parts of the large projects. I’m still doing Spring cleaning.
You guys are great…he is so funny and so bright. Prayers for you both on this journey❤️🙂
I love you both and admire what you are doing for others by documenting your journey. However, today I want to acknowledge Jason in particular it can’t be easy (emotionally or physically) to do what you do. Thanks
Awww❤️🩹 I really could tell the difference in Jason this time. You 2 are the Sweetest couple and Always in my prayers!
Congratulations. Pray for you and Jason daily. Came from your other channel. 🙏
You two are so wonderful for sharing this experience. It explains the issues in a very positive way. Thank you for sharing!
I feel so bad for what you are both going through and yet you both enjoy your time together. Positive attitude really shows.
I'm confused why did I have to subscribe again I hope this isn't the fake Channel I was already subscribe to attributable but I see this video and I'm not subscribed to it
❤❤❤ There's no way my mom would have done something like this. You two are great. Everything you are describing are things my mom dealt with at one point or another. Although, it made my mom mad if I tried to redirect her or correct her. Believe it or not, she might have been more stubborn than Jason. Love you two so much, I feel like you're family.
Best of luck to you both. You both got this and I’m praying. God be with you both! 🙏💟
It is interesting to me that a lot of the symptoms Jason is dealing with, like the obsession with an object & the thought process behind the obsession & trying to move forward, are similar traits/symptoms to what an individual with autism or adhd deals with. I am a caregiver for my 8 yr old grandson with autism & adhd & other adults with similar diagnoses & I was also a caregiver for my mom who passed from dementia 3 years ago. You & Jason are so incredibly brave to share your story. I feel the need, however, to reach through the screen & give you a big hug Leslie (sp?). I can see that you are putting on such a brave face when I feel like you are wanting to break down & cry. I am also an empath & your videos make me feel a way that when I am done watching one of them, I literally cry for you both. I almost quit watching because they are so emotional for me, I am literally crying right now writing this. That being said, I will not quit watching. I want to support you any way I can. I have commented on a previous video that I will be one of your biggest prayer warriors & I sincerely mean it. Prayers going up so blessings can come down on both of you & your family ❤️🙏❤️
I so understand… thank you for sharing your experience and life with us. Sending you love hugs prayers and kindness ❤❤❤
I know you enjoyed so many fun years with Jason. He’s a hoot, a wicked smaht hoot 😉
This is an excellent picture of the two of you and a great memory to have. Few years back we took some great photos together for fun to send to a relative and now I'm really glad that we have them. Seven-and-a-half years in and it's not getting any easier but at least my husband is still walking and talking. He's gone from the nicest sweetest man to very often, what I call cranky pants and that's difficult to endure when you knew what was. Enjoy the good times together because with this disease you never know when things are going to change...
Thank you two for sharing this information! It’s very helpful.
love your videos but the new channel set up is confusing for me. is jason not posting anymore?
Thank you both for sharing your story of Lewey Body. I look forward to watching more of your videos . Bless you.
This is super, super helpful!! Thank you so much and stay blessed!! You brighten my days. :). 🎉🎉❤❤
So helpful to me. Thank you for starting this spin off channel. My husband is experiencing some of these symptoms.
Is it a spinoff chanel?i was concerned it was fake
@@isabellavalencia8026 yes it’s a spin-off. Not fake. ❤️
Wow. Love this channel. Keep this up. I think a lot of people can benefit from the topics you discuss. My husband has Huntington's Disease and experiences many of the things that Jason does. He used to perseverate (stuck on something) a lot. It's definitely hard being a caregiver because unfortunately, you learn what works the hard way by failing a lot.
I went to OT therapy with my family member, who had a TBI triggered dimentia. She needed a lot of Qs and prompting . She needed to practice putting these daily task cards in order . . It helped the decline of executive function. Sorry if this is unsolicited advice or input. Fun fact jason , our brains no matter how well we multi task just were not designed for that . Hyper focusing can be used for good too , do you think the writing steps down will help ?
I have dealt with the overwhelm piece of your struggle. It’s so frustrating. My thoughts are with you ❤
I just subscribed I will be watching I love you both iam been subscribed to A charming Abode
Thank you so much for sharing your story! You are a great couple and I’m sure you are able to help others by sharing!
Jason and you are really incredible ! Jason is wonderful to explain what he goes through each day. To hear him talk and tell about his day it’s hard to believe the struggles he has . Thank you both for making these videos.
Also restless leg syndrome happens when we sleep. It’s a magnesium deficiency. If he’s not taking any magnesium I would give him some. Most of us are deficient in it.
Nope. Bath in Epsom salts that’s the best way to take /absorb magnesium. Must check with dr no contra indications with other meds
Restless Legs is treatable. Jason, tell your doctor. Could be related to the Lewy body or some medication. Consider letting Jason talk more.
You two are the CUTEST! ❤
My husband has right frontal lobe damage due to a brain injury and strokes. That is the lobe that controls executive function. I have to break things down one step at a time or he gets overwhelmed and can have an angry outburst. I have to keep it short or he will forget the beginning of what is said and then get upset when he doesn't do something right. Also, the part of the brain that tells you not to do or say something is also the right frontal lobe so they can blurt out things that they would normally never say to someone.
Why are y’all in quarantine? I thought that was over.
Thanks to both of you! You mentioned a skin test for LBD -- did you take it? (how did it come out?) And how can I get that test? (I have a few possible symptoms) Again: Thanks to both of you for sticking with this!!!
We did take it and are waiting on results! We will definitely talk all about it in the upcoming podcast! You can check with your neurologist about having it done. Ours was done through a company called CND Life Science out of Arizona in conjunction with the University of Kansas Hospital. Thank you!
My husband had the skin biopsy. His was called the Syn-One test. You can google it to find out more.
Theraworx, best stuff ever. There is a foam and a spray, it works great for Charliehorses.
Thank you!!
Hello, Leslie! Hope you are doing well. When do you plan to upload the other videos that deal with Jason's condition? Also, how often do you expect to provide new content on "Living with Dementia?" I think it was a great idea to create a new channel that specifically addresses the challenges of having a close family member with dementia. Your videos have been very helpful to me in this regard. Peace!
Y’all are so cute!
Love u two ❤
What are the original premiere dates for these new videos on your new channel? Just curios about the actual timeline for your story.
Projects r a no go for my hubby. He's easily confused & no concentration
That happens to my hand sometimes, usually when I'm cutting birthday cake. LOL. It just cramps up and takes forever to relax it back to normal. I don't know what causes it.
Can the neurologist or GP prescribe a muscle relaxant to head off the muscle rigidity?
You both are so adorable? 🙏🏻
Sounds like the rigidity is a form of "restless leg syndrome"...look it up and see if it fits. On what to do w Insurance companies: stick to your guns; if there is a grievance system, do it and keep all communications; Speak and write to your Insurance Commissioner in your State. Mitigate, mitigate...mitigate....til they lose and you win.
Leslie: at about your age I got interested in Law. I was raising my 2 sons (they were in their mid-late teens), working part to full time and started law school. I graduated (4 yr night school) and it cleared up a lot of misunderstandings I had about the world. Now my law adventure is medical ethics....many RN lawyers are needed.
Dr יוי
When you say hoarding could that be hoarding specific things like sauces beer T-shirts bullets?
Can Jason take medication for Restless Leg Syndrome? It can be be very helpful!
I've had the same doctor for 25 years she did not put together the link between the malnutrition she was treating me for and the b vitamin deficiency she was treating me for and the vitamin d deficiency she was treating me for and the alcoholism she was treating me for she never put together the incredible consequences of the combination I was self-diagnosed at home with my husband on Google went to my doctor and got confirmation through the neurologist
Can you ask one of his buddies to come over and help with the basement organization?
bet its not even messy
Have you talked about sleeping in separate beds at some point?
Restless leg syndrome. My husband has it and before a Dr finally diagnosed him, I never got a wink of sleep. There’s medication that helps.
Would Jason's condition benefit from a weighted blanket?
My feet have been getting cramps while Iam sleeping and it wakes me I have to get up and stand on my feet and the other day I did alot of gardening and the next day while doing my hair my thumbs locked one after the other,I asked the pharma. and she told me I needed pottassium and magnesiumI bought them and they worked right away. TRY!!
Does a weighted blanket help with the leg spasms at night ?
I'm confused. I thought I saw some of these videos a year or two ago. Did you start a new channel?
Quarantine? Is this an old video?
I’m a little confused. Is this actually a new video? Or is this an older video that you have recently moved over to this new channel? I keep thinking you are posting a new update, then I realize, no , this is from awhile back , but newly posted. Might be helpful to give an original posting date? Just a suggestion.
Exactly! I got confused too. An explanation would have been nice.
Have you guys tried a weighted blanket for maybe just his legs? Just thinking that may help while sleeeping so he doesn’t have to move to the sofa to push against it anymore? ♥️
Did you get the test result on if it's lewy body dementia or something else? I kept checking back and never saw anything. Hope you and yours are doing well today.
My husband has lewey dementia but sounds like he has Parkinson? My husband has had it 19 years dementia and the Parkinson the 2 go togethet!
Are you still in quarantine??
What is your other program podcast channel whatever it may be I'm not understanding how to find you that you do something else another thing what is.. I'm so sorry finding my words is very difficult
why is it you never talk about your Children
These videos seem to violate Jason's privacy. Not sure he would consent if he wasn't feeling like he should. I would not do this to my spouse. Won't watch anymore.
Can he take Gabapentin for the gimmy legs?
My poor husband I am sorry that the both of you have such horror to look forward to my poor husband the diagnosis is very new within the last couple weeks I'm not doing well with losing my spot in the home as the homemaker and the caregiver and the nurturer I'm not doing well with needing a babysitter and constant supervision I'm not doing well with my husband watching me walk around lost how sad and irritating and un attractive and repetitive. I need help moving forward I'm not sure what to do
I hate this disease. I hate its impact on your lives.
quarintine?
Well...i'm sorry. But i don't feel sorry for you guys. I see a lot more sad casus on youtube who desirve it a lot more for me to break my heart on about it.
With you i don't feel that girly.🎭
Btw lovely weather isn't it? ☀️
I don't think the reason behind these videos is to make You feel sorry for them. It is for openness and information. So heartbreak is not needed.
These videos are really helpful to me! My husband has had Parkinson's for 18 years and it has progressed to dementia. My understanding is that the biology is the same, or similar, to LBD it is just that in PD patients the damage begins in the mid brain with the motor symptoms then moves into the cerebral cortex with cognitive symptoms. In LBD it is the reverse. My husband's dementia is nearly identical to Jason's and , like Jason, his baseline starting point was fortunately very high. He was brilliant and a super achiever. I believe that has helped him. Thank you for these.