Hey everyone. Its been awhile since i have been on. But i wanted to get every second of time in with mom. Im sorry to say she lost her battle with psp August 20th 2019 @8:15 am. God i miss her and am having a really hard time with it. Her last hour was horrible. I was wishing she would go peacefully but that wasnt the case. I think because she didnt want to leave us. I kept telling her the last week that it was alright. But she didnt want to go. Ok now i cant see from all the tears swelling in my eyes. I want every one to know I had her on cbd oil for the past year and a half and the results were amazing. It brought her eyes back down so she could focus and it improved her speach and anxiety. I finally found the nano tincture. Its a stronger version of the cbd oil. I wish. I could have found it sooner. After she passed I found out that she had bells paulsey as a child. Not sure if that contributed to her getting psp or not. But maybe for those doing research on this god awlful disease would need to know. And I wanted them to know about the cbd oil. It really was amazing. I will be back on here to talk more but like I said, I'm having a really tough time right now. Christmas coming up and her birthday is 4 days after. Which we planned on spreading her ashes on her birthday. God please help us to get through this.
Mothers battle: Hey everyone. Its been... - PSP Association
Mothers battle
Yes the passing of your mother in PSP is very hard and unfortunately
my Kathy is in the late stages of PSP .I think the long drawn out decline
of PSP over many years make it hard for us to grieve properly and every
time I do post there are tears in my eyes ,and for me it's like I am waiting for something to happen, Xmas is almost here ,on Xmas day I will make
her day special, Remember the Happy days with your mother and I am
sure God will grant peace and Goodwill to you and your family
Love and prayers ..Peter
Oh Peter. I'm so sorry to hear about your sweet Kathy. And what your about to go through. And I think your right about it taking our ability to grieve properly away. Everyday I wake up the nightmare starts all over again. I pray for you and her and your family that peace comes to you all very quickly. Unfortunately for us caregivers peace does not come quickly. For now my advice to you is make her as comfortable as humanly possible, say what you need and want to say to her and know that if she isnt able to look at you or respond that she is still mentally there. She is. Seriously. Her body is just giving out. I had mom on cbd oil and I sware thats what gave us the extra 1 1/2 yrs with her. They need to get them on that early on . I truly believe in my heart and soul and from what I witnessed that it slowed the disease down. Trust me when I say I'm a realist. This isnt something I dreamt up. I seen it with my oen 2 eyes. Well 4 , I wear glasses lol. They need to do trials with nano tincture cbd oil. After all. They have nothing to lose and everything to gain. Well for what its worth Merry Christmas and I truly pray you have a good new year. Keep coming on here. It helps . Alot. I love this group. It has saved me. Hugs and prayers coming your way. And hugs and prayers for your lil soldier Kathy.
With love
Christy
Hi, I am so sorry you have lost your mum. The only consolation now is that, at long last, she is free of this vile disease.
My deepest condolences
Love Pat x
It's just so hard isn't it. We watch their decline over many years but it doesn't make the loss any easier.
I feel sure your mum is walking beside you now.
Take it one day at a time.
Big hugs
Sue x
I couldn't have said it any better. Thank you. I know I and my brother have PTSD from the past 2 years and watching and caring for our sweet sweet mother. Its been 4 months since she left and well this Christmas and her birthday which is 4 days after is just gonna suck. We plan on spreading her ashes on her birthday. She would have been 71. And as soon as I can figure out how to put our pictures on here from my phone I will. I love this group...... PSP SUCKS
It really does!
I lost my brother to PSP in March this year and so it's our first Christmas without him.
My mum (90) is finding it so difficult and hasn't stopped crying since we lost him.
Like you, my fibro flares and I'm trying to keep it on an even keel over the festive season.
I wish you well and to all the lovely people on this site who have lost loved ones or are still on their journey. You have all helped me so much over the years thank you.
Stay strong.
Big hugs
Sue x
Sincere condolences to you and your family. May she Rest In Peace. PSP sucks. 💔🙏💔🙏
Hi Cwolpe!
Thank you very much for sharing your experiences in this chat.
We often try to alleviate the various symptoms of PSP patients with the "trial and error" method, so I think your information about "CBD Oil" is very interesting for everyone.
Although each PSP patient seems to have its own characteristics and reactions to the medication, it would be useful to know what brand of CBD Oil you have used, the doses used and how often the doses have been administered.
All griefs are painful and are not forgotten, but end up integrating naturally into the life that follows.
After the inevitable end of the patient. The reality is that caregivers have loyaly devoted years of their lives to the loved one, during which they have sacrificed important activities and opportunities. It seems natural and logical that they try to enjoy the time they have while they have good health and physical conditions, since the caregiver is very aware that a less stimulating future comes sooner or later.
My suggestion: Enjoy life freely while you can. It is the minimum compensation for years of loyal, generous work and sufferings as a caregiver.
A big hug
.
Luis
Have a Happy Birthday!! You deserve it. Sending hugs across the way to you!
I’m so sorry for the loss of your mom. Have you tried cbd oil for yourself? Maybe it will help you feel better during this difficult time 🤷♀️ Everyone reacts differently towards it. I tried it before I went on an antidepressant. I found that it often would trigger a migraine and I stopped after a few times. Perhaps I had a bad strain? Anyway, I initially bought it for hubby but he didn’t care for it and he couldn’t communicate to me why or what his reaction was.
I looked up Bells Palsy and learned a lot about that so thank you for mentioning it. As far as I know my husband never had that but I’ll ask him about it when he wakes up.
Happy Birthday to your beloved mom. Sprinkle some cbd drops around her ashes and celebrate her life. You will get through this and down the road you will have some wonderful memories to fall back on.
Sending love and hugs from I SewBears ❤️Xoxo
Sending prayers of peace, grace and comfort as you move forward through the holidays without your mom beside you but what an angel she has become to walk this healing journey with you. I’m so sorry for your loss and blessings to you❤️
So sorry, and hard for you to have that memory of her last hours. Remember, her life was about so much more than that final day, and keep that knowledge at the "front door" of your misgivings. It is a source of frustration to me that no one, to my understanding, is doing epidemiological studies of PSP, CBD and MSA. I know that compiling demographic and medical history data on "our" patients is challenging since no one really knows without an autopsy what particular syndrome caused deterioration but I still believe that if we could put a lot of what might appear to be "random" information into a database and begin to sort it through, we would gain some insights.
Peace...
Marilyn
So sorry for your loss. Am also grieving the loss of my husband and know how tough it is, and my heart goes out to you.
Prayers and hugs to you as you process your grief. There is no easy path with this disease for our loved ones nor ourselves. 🙏💕 Kathy
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