LIVING WITH LEWY BODY DEMENTIA | OUR SECRET JOURNEY Ep.1

The struggles with dementia are very real. It can feel so isolating and alone. We have so much to learn and understand. We wanted to share our journey with the hopes of helping others and connecting with those who are going through the same thing. This disease can be very scary, and we don't know where we will end up. Please be kind and supportive, as it is very hard to put ourselves out here to the world; but it's time to share with family and friends our struggle. Thanks in advance for everything, because I know you all are awesome!

Follow me on Social Media:

[ACharmingAbode]

You never know what someone is going through. Be kind always. ♥️

[sunshsophprd.]

PEOPLE! BE KIND WITH THIS WOMAN...PLEASE...SHE HAS A LOT TO DEAL WITH ....THAT MAN WITH THAT LBD IS THE LOVE OF HER LIFE.

[sharonshoop]

My heart aches for you. My husband died 13 years ago at 66 years old from Lewy Body. I took care of him until the day he died and I HAVE NO Blessings to you!!

[ItsKelsiesLife]

I’m so proud that both of you are my parents ❤️ mom, you’re the most caring soul and dad’s got the best partner in life. Dad, you’re the best daddio in the whole world and I’ll always love you no matter what! I’m so proud to be your guys’ daughter. I hope you decide to document more of dads journey. So Pitt State Huh?

[bobscott]

I just lost my bride of 50+ years on October 12th. She developed Parkinsons disease about 17 years ago. Unfortunately, 80% of those with PD develop Lewy Body dementia, which she had for the last 3 1/2 years.
Most people think dementia is forgetting names and faces, but there’s a whole range of moods and character changes, which present huge challenges.
As a spouse taking care of your loved one can have huge challenges and frustrations, realize your wife or husband doesn’t mean the things they may say that may be hurtful. That’s not who they are, that’s not in their heart. Rather, it’s the dementia that has created the defiance, accusations, and combativeness of this sick and twisted disease.
I prayed everyday that the Lord would keep me healthy for her, and that He would give me the strength and endurance to complete the journey we faced, and He did just that.
I commend this young couple for their willingness to go through this challenge together. Leaning on the Lord and their love for each other, will get them through this challenging journey. However, patience and understanding will be required to help curb the frustrations.

[sevenrahman]

Im 36 & have acute dementia my IQ is 172....It's hard to watch myself deteriorate but it's God's plan so I can't and refuse to complain....God bless your family

[verngib]

Many moons ago Jason was my commander! Im sorry you and your family are going through this challenge. I wish you and your family well and will be praying for your family as you go through this storm! You are very brave! As you learn about the condition, Keep documenting and help others who may be experiencing the same type of symptoms!

[bodhimarkprinz]

I love the fact that you included us, the world, into your lives and shared something so intimate
and personnel with us. I still am crying because your husband knows he has you there for support and caring and he knows for now that he won't be alone. I am a doctor, OB/ Neonatology, with Doctors Without Borders and served 11 years in Africa ( all provinces ) and had symptoms of MS on and off while there. I talked to a lot of the doctors there and we all had the theory that I had MS. After a sabbatical in Israel, I talked with a cousin who is a specialist in autoimmune diseases and he felt I should be tested and try and narrow down the possibilities. While home I had to go to New York for budget meetings and the power went out that day. I had to walk down the stairs as I was having difficulties because of double vision and no color in the right eye ( optic neuritis ) I fell. I woke up in Beth Israel Hospital having stitches placed in scalp. Didn't know where I was and after 5 hours of testing from MRIs and spinal taps and blood work and neurological exams, it was determined I had MS. I went home and talked with the wife and we both wept. What are we going to do? My life's work will eventually take a turn and I am so perplexed. I am a believer in Yeshua ( Jesus Christ ) as a Messianic Jew and so I became so depressed. I went on another tour to Asia now and I literally tried to commit suicide. I was so ashamed to have to tell my wife because she is a believer too and I did not want her to know I was totally in despair. Eventually, on subsequent trips I received paperwork from her that she couldn't deal with a disease that would eventually cause me to lose function with dexterity and cognitive impairment, so she divorced me. After 28 years of marriage, she left. I was devastated. Now I am all alone and have no one to hold my hand through this disease and the turns in the road and end of life. I have GOD and HE will never leave me nor forsake me. But we are physical and need physical touch and beings to be with. So I pray every day that HE send someone to me to be a part of the journey. I am so happy you shared your story and to see you guys laugh and share the fun times together. But I know it isn't all roses and smiles especially as he progresses with the disease. Especially for you now a caregiver as well as a wife. But my hat is off to you for staying the wave and riding out the storm so to speak and giving your husband the very fact of having someone close and caring to make life a little simpler and happy for both. Thank you so much for your story. Bless you and Shalom- Dr. Bodhi Mark Prinz.

[TheFiown]

Empathy can also be a curse in life. I wish that I didn't feel other people's emotions as much.

[bwj]

He (still) has a good sense of humor which will get you through anything and he is obviously quite with it. Thank you for your service and good for you for your bravery here - true American heroes.

[carolfarago]

Lost my husband three yrs ago, he fought but lost. I went from wife into caregiver... It's very difficult. God Bless you

[brandiewhite]

Praying for comfort, strength, patience, and healing in Jesus name! Amen!

[shelton]

Thank you for being a NICU nurse. You are one of God’s angels on earth. I am sorry that you and your husband are having to walk this difficult journey.

[tsmathews]

I lost my sweet sister to this horrid disease. Prayers are going up for you and your husband. My heart is breaking for you while watching this. May GOD be your strength and fortress as you go through this. GOD BLESS YOU!!

[mmmmlllljohn]

What a sweet man and sweet couple. His intelligence is still evident and his sense of humour. Will be praying for you. Just subscribed. ❤️🇨🇦

[vkmccable]

I'm a retired nurse. Love your gentle, sense of humor. God Bless you. I will keep you in my prayers.

[autumnskye]

You two are amazing. I took care of my grandma and it was the hardest thing I’ve ever been through. Caregivers need to take care of themselves as well. My grandma been gone 20 yrs and I’m still tired. But I’d do it again even when she got so mean. It’s a heartbreaking disease. ❤️

[laurie]

I would very much like you to continue this documentation. My mother has entered dementia and she feels so frustrated and humiliated. We hurt for her, and are so frustrated ourselves. We feel very unequipped for helping her through this. Thank you, Jason, for being willing to share your Journey with the viewing public. I realize this is an intensly personal matter. You're very gracious and brave to be willing to help others with this.

[kdawson]

I feel like this woman works full time, double shifts with little to no pay. What an angel she is to take care of her husband. ❤️ 17:03

[lilyrose]

Jason, you are an inspiration to all of us who love and care for people who are afflicted with dementia. Thank you for sharing your story. Remember you are ALWAYS loved.