Cerebral Amyloid Angiopathy I have been outrunning my fate for years

  Рет қаралды 706

 My Cerebral Amyloid Angiopathy Journey

My Cerebral Amyloid Angiopathy Journey

2 жыл бұрын

My way of outrunning depression and the fate that awaits me.
I have Cerebral Amyloid Angiopathy to which there is no cure.
The fate that awaits me is not good. This has been my way of clawing my way through depression. By leaving my everyday world and holidaying mostly in Thailand I can forget, just for that short time, that I am not me, I am someone else and my future is a long healthy one.
Please subscribe to my channel and follow me while I travel this journey, I do not know how long this will take.

Пікірлер: 18
@debbieham990
@debbieham990 Жыл бұрын
Thank you for sharing your journey withCCA. My sister has recently been diagnosed with this and we are trying to get her to one of the wonderful hospitals where they can run all the tests and recommend the best path forward for her. I hope you continue to feel well.😊
@mycerebralamyloidangiopath4710
@mycerebralamyloidangiopath4710 Жыл бұрын
Thank you
@natashaivelisse6127
@natashaivelisse6127 2 жыл бұрын
You looked so happy 😀 in those pictures you have a beautiful family god bless you all
@mycerebralamyloidangiopath4710
@mycerebralamyloidangiopath4710 2 жыл бұрын
Thanks Natasha.
@natashaivelisse6127
@natashaivelisse6127 2 жыл бұрын
@@mycerebralamyloidangiopath4710 🙏 🤍
@mycerebralamyloidangiopath4710
@mycerebralamyloidangiopath4710 2 жыл бұрын
Thanks again Natasha for your note. I feel always so happy when I go overseas. It is a way to forget what lies ahead. I can be whoever I want to be. LOL. We travel mostly to Thailand. My favourite place to be. Has CAA affected your or a loved one? Take care Jean
@debbieevans7336
@debbieevans7336 2 жыл бұрын
Thank you so much for documenting your journey with CAA. My husband was diagnosed in 2017. First symptoms appeared in 2012 and like you subsided only to show it’s ugly face again in 2017. He had another bleed in 2021 (right side). Took a while to recover from that one (weakness on left side). He also had covid and covid pneumonia when they discovered the bleed that they kept calling “an old bleed” so not sure when he had it. He is doing well now, getting stronger every day. I have been hoping for someone to share their story. You will be such a help to not only those with CAA, but also the caregivers.
@mycerebralamyloidangiopath4710
@mycerebralamyloidangiopath4710 2 жыл бұрын
Hello Debbie, Thanks for writing. I feel for the people who care for us. This is never going to be a good journey for them is it? Sounds like he has been through the wars and I am sorry to hear it. Looking back at original documents it does seem that my Neurologist in 2014 suspected some sort of brain disease but was waiting for affirmation before telling me. I am hoping that these videos will be of a slight help to others. Thanks for writing and keep in touch regards Jean
@Giovan_Nino
@Giovan_Nino Жыл бұрын
The videos are a great help..please carry on if you’re able to..Not heard from you in a while, hope you’re doing ok..
@mycerebralamyloidangiopath4710
@mycerebralamyloidangiopath4710 Жыл бұрын
@@Giovan_Nino Just about to put one up tomorrow
@judygravespdx
@judygravespdx 2 жыл бұрын
Thanks for your videos. I was diagnosed 3 years ago and depression and anxiety have recently set in. I am so fearful of Covid and was wondering if you were able to receive the vaccine without any effects to your CAA or episodes. Thanks for answering.
@mycerebralamyloidangiopath4710
@mycerebralamyloidangiopath4710 2 жыл бұрын
Hi Judy, I worried about getting the Vaccine and although it's not "compulsary" here in Australia, I thought it was something I should do plus I hopefully will get to travel overseas in 2022. Our Government wanted my age group (in the beginning) to have Astra Zenica and I didn't want it because of the blood clot issue. I wanted Pfizer. Later on they changed their minds and we oldies were allowed Pfizer. I contacted the Neurologist that I was under to ask his opinion. I was told that considering my age and what I had (CAA) that it would be the best option to have it. One risk outweighed the other risk. I decided to get it done. I had no problem but a sore arm after the second dose. Have you got a neurologist you could ask for their opinion. You should definately chat to a professional especially if you have other underlying health issues. I did not see any difference in the episodes. Hope this helps. Thank you for your question. Jean
@debbieevans7336
@debbieevans7336 2 жыл бұрын
My husband has had both vaccines with no problems. His neurologist said his team had not seem any issues with anyone they treat taking it. He felt like it would be worth the risk. Of course my husband had already had covid when he took them. He had Pfizer.
@sheilamorgan5926
@sheilamorgan5926 2 жыл бұрын
Thanks Jean - hopefully this is working you. I see you're from Australia! So fun chatting across the world. I'll check I think our time is actually the opposite!
@mycerebralamyloidangiopath4710
@mycerebralamyloidangiopath4710 2 жыл бұрын
Are you from England. I was born in London and moved to Australia with parents when I was 10 years old. Hope all is well Jean
@sheilamorgan5926
@sheilamorgan5926 2 жыл бұрын
Hi Jean ~ I am from northern Michigan in the USA! How great to be able to connect across the world! More tests coming first of February with Neurologist. Will keep you posted! Sheila @@mycerebralamyloidangiopath4710
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