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@atombomb50 4 күн бұрын
Thanks for your vulnerability about this. It’s a difficult journey.
@kathybellptha 8 күн бұрын
I was out of the hospital the same day. The pain was totally unexpected! I am on week three. It is not as painful but those first 2 weeks were indeed very painful. 🇨🇦 Thank you for being real.
@antdod1 3 күн бұрын
I've had my hip replacement almost two weeks ago I'm just like you I watched videos of people walking the same day I couldn't even lift my leg the evening of the operation or the next day ...I've been doing quite well but today the pain woke me up..pain in my buttock thigh calf shin and ankle...I think the muscles are getting tight...I have no idea if Im over doing things or not doing enough
@williambarnes7954 17 күн бұрын
I totally understand what you are going through. I’ve seen all the videos that people post re their recovery, and am astounded at the speed they get back to any worthwhile activity. I really don’t think is the average recovery for most people. So I fully respect your honesty. I’m a 71 year old man and had the hip replacement 4 weeks ago now. This has been much harder than I thought as recovery is very slow. Small improvements every day. But many weeks away from any normalcy. But hopefully, and I do believe this, it will be all worthwhile. Thanks for posting this video.
@mycerebralamyloidangiopath4710 5 күн бұрын
Hi, thanks for the comment. My hint is to make sure you continue doing the exercises that the Specialist gives you. Every day. I was not able to do that as of the Vasculitis that developed in my legs and the sores that were present up until about a month ago. I am still behind in recovery but am walking without sticks or mobility aids now. My specialist usually gets patients in hydrotherapy at about 8 weeks but we have decided that I shouldn't go into chlorine water due to not knowing what triggered the vasculitis. Good luck with your recovering and keep on with those exercise.
@PhyllisAnderson777 27 күн бұрын
You are very courageous. Thank you for sharing your words and your heart.❤
@kumochannel Ай бұрын
Thank you Jean. My grandmother just had a CAA episode this weekend, but has since recovered. This past week has been the biggest whirlwind I’ve ever experienced. I’ve felt like I’ve just been in shock and numb for 7 days, but it all came out during your video. You are so right when you say there so few people talking about it. I must have scrolled past 50 scientific powerpoint videos before I got to yours. I will definitely watch the rest of your videos. Thank you so much and I wish you the best ❤
@mycerebralamyloidangiopath4710 Ай бұрын
Hi, It is a real shock when you hear those words spoken. Nothing prepares you for that or for the feelings that come afterwoods. As someone who cares, you will go through many emotions too. Just remember, even if she never says it, she will always love you and appreciate the things you do for her. Take care Jean
@boop8127 2 ай бұрын
Face droop immediately calls for brain scan
@cjones3702 2 ай бұрын
Your video is the most real I've seen. I fell and broke my hip and i haven't seen anyone in a similar position. When i fell i also hurt my knee and shoulder, so it seems to be taking longer to heal.
@MyFungal 2 ай бұрын
I also fell and broke my hip in pain not only with the leg
@jimmesser2025 2 ай бұрын
For once the truth I’m 4 weeks out and it has been a real experience none of these jump up and walk 2 days later videos been off the walker for 4 days and the cane is my mode of transportation
@mycerebralamyloidangiopath4710 2 ай бұрын
Yes, I believe most of the videos are put out by Hospitals, Specialists, Physios so as not to scare us off. LOL I am off the walking Canes mostly and just use them for a bit of stability because of the problems of Vasculitis which hit me one week out from hip surgery where my two legs became balls of sores and puss. I am at the three month stage after left Hip surgery now and the only real problem I seem to have is that the length of the surgical leg is 1.5cm longer than the other. (Why? Surgeon said it happens and it will probably come good. Whatever that means.) I have just bought some height riser from Amazon and they arrived today so will be fitting them as soon as I can properly get a shoe on the left foot when the swelling and sores from vasculitis subsides. I wish you all the best. Thanks for the comment and keep at it. Try to keep up the exercise as I was unable to and still get very stiff. Regards Jean
@lindasmashnuk 2 ай бұрын
I'm a 71 year old female, considered slightly obese. I also saw all those videos of people walking immediately. My surgeon had me non weight bearing for 6 weeks, which was horrible. Try doing ANYTHING with crutches or a walker... the pain from the incision wasn't bad after the first week, but I got blisters on my hands, then my elbow started aching, and made my right hand go numb, then I tore a muscle under my shoulder blade by using crutches. If it weren't for my puppies and cats I think I would have given up. The depression was awful. Finally just after the 6 week mark I was allowed to start walking and the leg was so weak that it shook, but finally getting around with just a cane. The next thing, my knee and ankle swelled up and are very painful...Dr tells me they had been over compensating and had to learn a new norm, which could take another 3 months😢. I'm in Canada, too. So, the reality is that some people find clear sailing, but I think the majority of us just suffer along in silence...not making KZbin videos. Thank you, and I do believe it will get better!
@mycerebralamyloidangiopath4710 2 ай бұрын
Hi Linda, Gosh you have been through it havn't you. I have never heard of the non weight bearing theory before and can only imagine how blooming awful that would have been. I could not have done that for sure I couldn't. It was bad enough that I developed Vasculitis at the first week mark and spent upto now with puss filled blisters and excruciating pain. I am unfit to start with so that didn't help me. Im glad your fur babies were there to help get you through. They make a big difference don't they. I am nearly at the three month mark now. I limp because my new hip has made that legger higher than my old leg and it throws my back out. I will have to get a height riser insert. I can do for myself now and have just stopped using the walking canes. I take them if going shopping at the supermarket or Mall just for confidence as I am wearing two odd shoes at the moment. The shorter leg to raise the height a little. I don' care it looks odd and because me legs have a lot of discoloration it just looks like the shoe is on because of that. LOL I am wishing you good recovery.
@suehyde5648 2 ай бұрын
I really feel for you, your story sounds so like mine in many ways. I don't have the same health issues as you but have type 2 diabetes, an underactive thyroid and have a blood clotting problem. Im 67 and am also overweight as well. Im just over 1 year post op and I found that walking with crutches was much easier than a walker at the start. Everyone recovers at a different rate but you will get there, I promise. I get what you say about sleeping too. Apart from not being able to get comfortable, i was getting up 5 or 6 times a night to wee and thought it would never get better. I wish you well in your recovery. Xx
@mycerebralamyloidangiopath4710 2 ай бұрын
Thanks Sue, Well its been nearly 3 months now since Hip Surgery. I ended up, one week after surgery developing Vasculitis which has taken up until now, to heal itself. Not quite there yet with the vasculitis but doing really well with the walking after hip surgery. My left leg is oh so slightly longer than the right and is a slight problem . I will be getting some shoe inserts soon to see if that helps even things up. Thanks for taking the time to watch the videos. Jean
@commonsense6967 3 ай бұрын
OMG! What a nightmare! I hope your recovery is going well now, and that you're enjoying your new hip.
@mycerebralamyloidangiopath4710 2 ай бұрын
Thanks for the comment. Nearly at the 3 month mark for the Hip. It is doing quite well and I am coming along well. One leg still shorter than the other but I can get an insert for my shoe and that will solve that. Vasculitis, thanks to a heap of you beaut medications is coming to the pointy end of recovery now. Looking good on the outside but still very bruised on the inside. I am happy where we have got to so far.
@jociepringle4995 Ай бұрын
so glad you are in recovery it’s great to know that it is possible , I’m currently going through the exact same thing with my vasculitis, any advice on what medications have worked for you? None of mine seem to be working 😒
@mycerebralamyloidangiopath4710 Ай бұрын
@@jociepringle4995 Hi, I have been on Prednisolone (I think thats how you spell it) and later I was put on Colchicine to supplement the Prednisolone as because of the side effects of pred they didn't want to raise it up when the pain increased so they had me take Pred and Colchicine at the same time. If that makes sense. All of the soars have dried up now. The pain has gone. The skin is left with huge red patches at the moment but I think they will go as time goes by. I am much happier now and coping mentally better. I am only on the pred for another 2 weeks then finished and 6 weeks for the colchicine then finished. I was able to ween off the Tramadole a few weeks back. Hope you find something soon that will help you. regardss Jean
@apriljoytan5382 24 күн бұрын
Hi Jean I hope youre doing well now and have a fast recovery. Recently been diagnosed with IgA vasculitis but been suffering from this for almost 2 months. May question is does it itch on a later weeks? It was not itchy at all but the past 2 days I wake up in the middle because of the severe itch each on my leg and feets usually the red spots and bumps. How did you manage it? Hope you can see my message.
@mycerebralamyloidangiopath4710 21 күн бұрын
@@apriljoytan5382 Hi, Mine started as slight little red dots and within a few hours went into a very bad rash which over the following days went into sores and then puss filled sores. They did not itch, ever. Pain was terrible. Apart from the pain on the outside, I had and still have pain on the inside which is like an internal bruising. The sores have now cleared up apart from one which is holding on. It has been a very bad experience. I took Predisalone (think spelling is correct) which I believe was the meds that helped the most. Doctor has recommended yearly Kidney testing as this disease can damage the organs in the body. Hope you get well soon. Jean
@Susancb56 3 ай бұрын
Jean, Things seem to be going in the right direction . Thanks for the video and keep smiling 😊
@arrowheaddev 3 ай бұрын
Wow , keep pushing forward it’ll get better My experience was the opposite I’ve had 2 replacements in 12 months I was on Tramadol for 3-4 days then Tylenol and Celebrex Off my cane in week 3 I worked really hard on my fitness and stregnth pre surgery I had surgery at 9 am home by 4pm both times My pain was worse w the arthritis pre surgery, very little after surgery I started riding the stationary bike at day 10 . I’d ride twice a day at a very mellow pace Week 2 I started back to the gym doing upper body and light leg extension and hamstring curls By week 4 I could do a lunge and week 5 + ish I started Pilates . Im week 16 now after my second total hip and back to cross fit , mountain biking and hiking Im almost 60 and feel 40 again It’s amazing but I work very hard In the gym almost every day from week 2 to week 12 I’m squatting 200 lbs now , deadlifts and doing 36 in box jumps Looking forward to playing hockey and skiing this coming winter season I’m extremely thankful for the surgeries , its given me my life back 💪💪
@mycerebralamyloidangiopath4710 2 ай бұрын
Well its been nearly 3 months now since Hip Surgery. I ended up, one week after surgery developing Vasculitis which has taken up until now, to heal itself. Exercising has been a problem due to the painful legs and sores on the legs. Not quite there yet with the vasculitis but doing really well with the walking after hip surgery. My left leg is oh so slightly longer than the right and is a slight problem . I will be getting some shoe inserts soon to see if that helps even things up. Thanks for taking the time to watch the videos. Jean
@mikepasko7493 3 ай бұрын
The problem with me I live alone my wife passed away 4 years ago so I am in a rehab 3 weeks now
@mikepasko7493 3 ай бұрын
I agree with you ...I am having the same problems
@user-rb8wo6qz9w 3 ай бұрын
Jean thanks im also recover from my hip surgery and yes i feel and look the same as you with my fat belly and im in my 3d week but it hurts still im off painkillers but my back and bums are hurting my one leg also longer than the other still feel stiff and swollen its just very hard flippen hard im glad you made this video for our fatty people i hope things will be good for us. Im 51 but hell woman this is hell for me. I hope not something is wrong i just also feel shit because the other people walk and recover so fast im not to fat but hell something just feel not right. Will i ever come right??? Goodluck 2 you and i hope the best for you.
@mycerebralamyloidangiopath4710 3 ай бұрын
I had my first post op visit with SUrgeon last week. He acknowledged that some have the feeling of one leg being longer than the other. He said not to rush out and buy and height insoles for my other shoe as I will probably find that over time we will adapt to the feeling. He said that due to the length of time we "hobble" around waiting for surgery, we can weeken muscles and tilt to one side so that after surgery we feel that its not right. He said for me to give it time. He said that there is an acceptable length difference of 1 cm and muscle strength should correct it. I will wait and see before spending my money. LOL You may have seen that I have also had problems with a diagnosis of Vasculitis which has held me back but he said to not worry as I will catch up when things heal up. Im getting around a lot better now but the pain from Vasculitis is still hard to bare. I walk mainly without crutches now but use them when I go out for stability and peace of mind. Have you had a follow up with your surgeon yet. Make sure to ask him all the questions you are worried about when you go. Keep me updated Regards Jean
@mycerebralamyloidangiopath4710 2 ай бұрын
Hi, I thought I would follow up with you and see how you are going. I am walking independant of any aids now although I will use a cane when I go to the Supermarkets and shopping centres just for stability. As I developed dibilitating Vasculitis on both my legs, top to toe, I am only just know at the point of the legs recoving fully and thats on the outside, the inside of legs still feel tender due to bruising. I must admit, as per hip, I still limp so feel I will need one of the shoes get an insert. I am not really an excersise girl so I do what I can. No pain from the hip so think all is well there. My first visit to hip surgeon he made a remark that normally he would have me in a "pool" at that stage but hell no. This girl isn't a pool kind of girl unless I am in a beautiful pool in a beautiful hotel in the beautiful country of Thailand. The only reason I limp is cause of uneven legs. Hope you are going well and things are going better for you. Jean
@patchworksmiley4655 3 ай бұрын
Was an interesting watch about your hip surgery, loved your "fix" on your leg raiser, I bought one for my hubby & he doesn't use it but with your adaptation I think he might. Also waited right till the end for you to say about a colonoscopy, was my first thought when you mentioned 'blood in stool', mind you it could be a side-effect of longer-term use of aspirin. Are they enteric coated? Might be the cause of tummy pain too. I hope you continue to improve. ❤
@mycerebralamyloidangiopath4710 3 ай бұрын
I am still waiting to hear about the colonoscopy appointment. The tummy pain has eased off and yes I agree could be the aspirin and also I was on other meds while in hospital too. Hope the leg raiser trick helps a little. I thought at first that I maybe could get by with skipping some of the exercises but I think they actually have helped. Im doing a lot better now. Hardly use the walking canes only when I go out for stability. Not sure what they were coated in and because I am off them now I do not have the name of them to check. Thanks for the comment. Tell your husband there is light at the end of the tunnel. I think I am nearly 9 weeks post op now and doing most things my self. Regards Jean
@mycerebralamyloidangiopath4710 2 ай бұрын
I am booked in for the Colonoscopy for this coming Friday 21st June. A bit nervouse but probably not the worst thing I have had to deal with. I just put another vid up about the lead in to the surgery and the prep work needed. I would love it if you could check it out.
@Susancb56 4 ай бұрын
❤❤
@karendavis9254 4 ай бұрын
You’re very brave, Jean! Best of luck!
@mycerebralamyloidangiopath4710 2 ай бұрын
Thank you so much!
@inmyhead_sharon421 4 ай бұрын
My friend. Thank you so much for being so brave and posting these videos while you are going thru so much. You are so brave ❤️
@Cobs77 4 ай бұрын
Sending you lots of positive wishes. You've been through the wars and I really hope things improve very soon
@mycerebralamyloidangiopath4710 4 ай бұрын
Thanks for the message. I am 6 weeks post Hip Replacement operation today and 5 weeks from the start of the Vasculitis. We are seeing big changes in the legs now and most problems are just on the feet and ankles. Slowly repairing and so thankful the end is in sight although then starts vigilance as this disease can affect kidneys lungs joints etc. A 6 week post op video coming soon.
@inmyhead_sharon421 4 ай бұрын
No need to apologize at all! I am always here ❤️
@inmyhead_sharon421 4 ай бұрын
Sending hugs from Canada 🇨🇦
@Cobs77 4 ай бұрын
Oh Jean I feel for you. I've been following your story as my 79-year old mum has CAA-ri and has severe osteoarthritis in her left hip. She is in so much pain when she walks/moves but her neurologist has said she shouldn't have surgery as the risk is too high and to get on with life and deal with the pain! She has physio every week and hydrotherapy every week too which I think helps but it's so difficult seeing her in so much pain. I also know recovery from surgery won't be easy and your videos have helped to understand and think about what that might look like if she was able to have surgery.
@mycerebralamyloidangiopath4710 4 ай бұрын
Thanks for your comment. Gosh that is a bad dilemma to be in. Im not sure that the solution that my Neurologist and my surgeon came up with was a good one or not. So far, I have taken 100mg asprin for about 38 days and today was the last one I have to take. So far so good but now that I am about to stop I am not sure that my risk of Clot will be zero. I guess I will just have to stay vigilant. Your mum has a lot against her I guess. Age for one thing, General Health, How bad her CAA has been and the amount of bleeds she has had. The pain of the hip ( mine was arthritis related) was life altering for me and the quality of life I was having was low, I felt. I am sorry for this situation. Does your mum take pain killers? Has her Neurologist got her on all the pain killers he can safely give her? If not you need to ask him. Don't be afraid to challenge him. I know they say quality of life over quantity but those decisions are hard to make. Do you see a specialist for the osteoarthritis? If not get her to see one and get the use of all of their experience. I hope that soon she will be able to find better medication to help with the pain.
@Cobs77 4 ай бұрын
Hi Jean yes my mum is on Zomorph 10mg twice a day and paracetamol and also now supplements that with Oramorph 4 times a day. We recently saw a pain specialist who is putting mum on morphine patches and introducing a morphine holiday for 1 week every 3 months. Mum has seen an orthopaedic surgeon who said the hip surgery itself would be very straightforward and he gave her a steroid injection that worked for about 3 days only. He's offered to do that again but we're sceptical as it didn't work the first time. She's also seen a haematologist who said the risk of having surgery without blood thinners is too high and she would need to be on them for min 10 days. We have an appointment with Prof Werring at the end of July to hopefully pick his brains about the risk of more bleeds. Her quality of life is so impacted. Her mobility now looks very similar to your mobility just after your surgery. It's very tricky all round but I think we're doing everything we can and just hope Professor Werring can help provide a second opinion of the risk of a bleed if she had surgery.
@mycerebralamyloidangiopath4710 4 ай бұрын
@@Cobs77 Hoping for good outcome for you Mum.
@cjc7131 4 ай бұрын
11:22
@cjc7131 4 ай бұрын
So sorry to hear you are going through more problems , I hope they get some relief for you soon. Looking at your pictures, I had the same looking thing on my lower legs from doing a lot of walking in the heat of Italy and I had no idea it is associated with CAA. Sending better luck to you!
@mycerebralamyloidangiopath4710 2 ай бұрын
Hi there. Thanks for the comment. I think we have ruled our the Vasculitis (Leg issue) although an auto immune diseace we don't think it was caused or associated with C.A.A (I see my Neurologist in a couple of weeks but think he will agree). One less thing to worry about. I am now heading towards a Colonoscopy on Friday to sort out why they found blood in my stools when I was put in hospital at the start of this rash. It seems never ending but I guess thats life . The legs are getting better too so that is good. Stay safe and have a good one. Jean
@Susancb56 4 ай бұрын
I really feel for you Jean,you were doing so well , until the rash happened .Thank you for being so open and honest,hopefully you are now on the mend? Take care.🤗
@mycerebralamyloidangiopath4710 4 ай бұрын
Slowly, Slowly.
@inmyhead_sharon421 4 ай бұрын
Jean. Thank you for posting this journey 💜
@mycerebralamyloidangiopath4710 4 ай бұрын
You are so welcome!
@mycerebralamyloidangiopath4710 4 ай бұрын
I am always thankfull for your comments my friend.
@Susancb56 4 ай бұрын
Well done with your mobilising Jean 😊 I hope everything is ok with regard to the rash Take care, keep doing what you're doing 🤗❤🌟
@mycerebralamyloidangiopath4710 4 ай бұрын
I have a long journey ahead as the rash turned into something nasty. Keep watching and thanks for your comment
@Susancb56 4 ай бұрын
You seem to be doing great Jean😀Take care, and I’m just off to watch part 2. XX
@mycerebralamyloidangiopath4710 4 ай бұрын
Thanks so much
@cjc7131 5 ай бұрын
so sorry to hear your latest news, we won't abandon you 🤗 (I have CAA and just this afternoon have rec'd an appointment to see a consultant for it in June....2025!!!!! (I'm in UK).) All the best to you.
@mycerebralamyloidangiopath4710 4 ай бұрын
thanks for the comment. Keep watching as this journey takes a very unexpected turn
@Susancb56 5 ай бұрын
Lovely to see you, and you are at least cheerful😀We will stay with you, and won’t abandon you! Much love, take care , keep smiling Jean 😀xx
@susankelland638 5 ай бұрын
So lovely to see you again - and smiling in the face of it all! Well done! Amazingly you're looking very well so that's one positive. Keep it up and we stand with you. XOXO
@mycerebralamyloidangiopath4710 4 ай бұрын
Thanks for the comment. keep watching as it all takes a very unexpected turn.
@user-wl2ub3xh9n 5 ай бұрын
hi jean..................thanks for the videos..............my wife has CAA and was very ill last year with amyloid related inflammation but a long course of steroids has made a big difference.............she had seven brain scans last year but the question of having a PET scan has never been mentioned..........do you have any information on why the PRT scan was suggested ? hope your hip operation goes well...........tony from melbourne
@mycerebralamyloidangiopath4710 4 ай бұрын
Hi Tony, Thanks for the comment. I think he wants a PET scan as a starting point for seeing how i actually progress. (Even though we are years in) I initially didn't go ahead with the PET scan as I didn't actually feel right about having it but he has asked me to reconsider and I have decided that when I am well from Hip Replacement and the alergic reaction I had from Asprin, I will go ahead and do it.
@bissells 5 ай бұрын
Thanks for sharing. Have you had any brain bleeds? if so, how many and when did it start?
@mycerebralamyloidangiopath4710 5 ай бұрын
Hi There. Yes I have had substantial amount of bleeds and according to my Neurologist "to many to count" Luckily they have not caused to much damage so far. Mild cognitive impairment, unstable when walking. First symptoms occured in 2014 and I was diagnosed in 2020. I am at my 10 year mark this year. It is an inclusive club that no one wants to be a member of. I hope you are doing ok and managing if you are the one with CAA and if you are a carer then on behalf of your loved one, thank you for being there for them. Regards
@bissells 5 ай бұрын
Thank you for taking the time to answer. I assumed that you must have had at least some bleeds over all that time, but I was surprised you didn't mention that, but I have not watched all of your videos yet. Do you remember when you had your first bleed? Was that when you started your countdown clock? Scary stuff, right? But like so many serious conditions, the unknown can be the hardest part. I am the one with CAA and was just diagnosed this month, so I am still trying to process. I feel like I'm in a nightmare at this point. I've had 3 subarachnoid bleeds this month, along with all of the other symptoms you mentioned. But the bleeds were the doctor's main concern and what got me a fairly quick diagnosis. Thank you for posting these very personal videos and know that they are extremely helpful to me and I'm sure many others as well. ❤@@mycerebralamyloidangiopath4710
@bissells 5 ай бұрын
@@mycerebralamyloidangiopath4710 Thank you for taking the time to answer. I assumed that you must have had at least some bleeds over all that time, but I was surprised you didn't mention that, but I have not watched all of your videos yet. Do you remember when you had your first bleed? Was that when you started your countdown clock? Scary stuff, right? But like so many serious conditions, the unknown can be the hardest part. I am the one with CAA and was just diagnosed this month, so I am still trying to process. I feel like I'm in a nightmare at this point. I've had 3 subarachnoid bleeds this month, along with all of the other symptoms you mentioned. But the bleeds were the doctor's main concern and what got me a fairly quick diagnosis. Thank you for posting these very personal videos and know that they are extremely helpful to me and I'm sure many others as well. ❤
@mycerebralamyloidangiopath4710 5 ай бұрын
@@bissells I think making a time line prediction from time of diagnosis cannot really be a true time line when you have had the symptoms for years. My Neurologist believes that I did have it back in 2014 just was not able to give it a "name"
@sojibrajiiii 6 ай бұрын
Hi, How are you? Do you want a professional KZbin thumbnail designer? Let me know please? Thanks
@Giovan_Nino 6 ай бұрын
Thanks for making these videos..it’s immeasurably helpful to those that have CAA..you are a trail blazer..
@mycerebralamyloidangiopath4710 6 ай бұрын
Thank you so much. We are getting closer to tentative surgery date. I just put up another video too
@chainsawteddybear 7 ай бұрын
I would marry you right this moment.
@trudysiemens 7 ай бұрын
❤
@Susancb56 7 ай бұрын
👍❤
@Giovan_Nino 7 ай бұрын
👍
@trudysiemens 7 ай бұрын
Hi Jean. I just finished watching your new video. I was already having my coffee when I started to watch it ☕️ as it’s morning here. I hope everything goes smoothly with your surgery. I’ll keep you in my thoughts and prayers 🙏💞
@mycerebralamyloidangiopath4710 7 ай бұрын
Thanks Trudy. I am a long way off from Surgery as I need to wait and see my Neurologist but I hope it gets sorted. I am thinking May or June. Take care
@trudysiemens 7 ай бұрын
I’m so sorry to hear about all these issues that you’re having to go through. Like isn’t it enough that you already have CAA? Hoping and praying for the best 🙏💞
@mycerebralamyloidangiopath4710 7 ай бұрын
Thanks Trudy
@ciapak6590 7 ай бұрын
Dear jean, Just saw your videos. 👍 I just got diagnosed last Friday with CAA too. I am still in research mood, trying to find out what is going on and why I am so lucky to get all these just when I got retired and want to have fun with my wife. I never give advice to anyone. But all i can say, we all are on the train of life and when our stop comes about we have to get off (no exception). Till then be strong as you are and have fun. Laughing is the best medicine to any pain. and cheap too. Specially here in US. sorry for my English, I will practice more once I get off the train😂 Stay strong.
@mycerebralamyloidangiopath4710 4 ай бұрын
Always gotta keep moving. I am, at the moment, post op hip surgery which hasn;t gone to well. I have had an alergic reaction to medication and it has sidelined my recovery. I am battling to keep up but keep on trying. I see small changes everyday and will keep pushing. Thanks for the comment. and the advice. regards Jean
@JM-sj6ne 7 ай бұрын
Jean first I want to say I will pray for your healing. Second we are grieving my ex husband and our children we aren't doing good with this CAA. We don't know anything about it except Google and they say to stay off Google. His present wife wanted to have his brain removed and studied to tell us what and how and any information they could tell us all. His was so quick, started with headaches bad ones, but he thought he was just getting migraines again, he had them earlier in his life. Then about a month later he had what seemed to be a stroke.. she took him to the er and they took xrays and they couldn't find anything wrong. Just take him home and keep an eye on him. Now the next one was 3 months later. She took him to a hospital she got her doctor residency at. They saw the xray and said he had a mini brain bleed. They couldn't find answers of why? was it a stroke? They said it was a Haemorrhagic stroke. Okay why does that type of stroke happen. It's hard to say. They believe CAA! Theft sent him home keep an eye on him. 2 months later he had a massive brain bleed, he was put on a helicopter and went to a neurologist special hospital. This doctor after 3 days his wife called the kids and said you better come quickly I don't know how long it will be. John had a dnr in place so the doctor said there is nothing they can do. And he would be a vegetable so it's probably best he has the dnr. The whole thing was to fast from October 2023 to his death December 2, 2023. I want you to know that I have been watching your videos and feel like I am getting some information from you so thank you. We still haven't got the results with his brain yet. They said it could be up to 3 months. We all just want to know how it happened so fast. He actually was doing rehab and doing pretty good before the last one. Nothing make sense.. So please know that I am praying for you, and I thank you for opening up for all of us that are dealing with CAA our a loved one that had it. God bless you and keep you. With great appreciation Love and hugs Joyce Murray
@mycerebralamyloidangiopath4710 7 ай бұрын
This is devastating to hear. I am sorry for your loss. C.A.A doesn't appear to be widely known about and many Neurologists know nothing about it. Because I am not a Doctor I will not go into trying to answer your questions as I do not have the answers. Time frames of life seem to differ immensely. He very well might of had it for years undiagnosed. From what I believe, Cerebral Amyloid Angiopathy is a build up of the Amyloid B protein which forms in the brain and makes the blood vessels brittle and then they bleed. Many small bleeds until they get to the stage of massive hemorrhage. Usually the small bleeds create a stroke like symptom which is often misdiagnosed as T.I.A but is not. The disease often affects cognitive function also. I pray that you all find the strength to get through this sad loss.
@patchworksmiley4655 8 ай бұрын
Very informative. We live in Qld. My brother was diagnosed with C.A.A. yesterday after 2 months in hosp/rehab having had 5 or 6 bleeds the first week & serious delirium for the subsequent 4 weeks. The initial bleed was in Oct 2023 & he was diagnosed Dec 2023. Is there a Facebook page for C.A.A.? I'll have to check
@mycerebralamyloidangiopath4710 7 ай бұрын
Hello there. Sorry to hear about your brothers diagnosis. It's a bitter pill to swallow. If your brother would like to join a patient only facebook group try this one : facebook.com/groups/374036557981756 It is not for family or care givers just for patients. it's a safe group to talk with. We often just need someone who really knows what we are going through to chat with. For yourself, family and care givers try this one: facebook.com/groups/443042499391499/ just copy these links and paste into the search bar on your laptop. Or this one: facebook.com/groups/775736939275525/ These groups have a fair bit of information but please do remember that none of us are Doctors and you need to do your own research. Not all Doctors/Neurologists are familiar with C.A.A and you might find you have to speak up for your brother and get second opinions til you get proper answers. Wishing him and your family Strength as it's going to be a bumpy road.
@paulawagstaff686 9 ай бұрын
Hi Jean. I am in NZ. I have AL Amyloidoisis. Started treatment 2014, still going. Long story, however. I want you to Google curcumin on say Pub Med. Info is EVERYWHERE. You could even Google Amyloidoisis and curcumin, (tumeric) it us strong anti inflammatory. I take 2-3 gms a day. Research all that info...blessings
@paulawagstaff686 9 ай бұрын
Jean. Start Tumeric/ curcumin around 500 - 1000gms then build it up over 2-3 weeks.
@karendavis9254 10 ай бұрын
Thank you Jean!
@debbieevans7336 10 ай бұрын
Thanks for sharing this. I don’t have CAA, but my husband does and I know he mourns his previous life.
@mycerebralamyloidangiopath4710 10 ай бұрын
Sorry to hear that your husband has CAA. There are numerous facebook pages to join if he is interested and there is a new "Patient Only" fb group and it is a safe place just for patients, where he can chat or vent with other patients with CAA. facebook.com/groups/374036557981756/
@nesekitty9703 10 ай бұрын
🤍
@marilynnlawler2363 10 ай бұрын
15 min a day in sun without sun screen will give you required dose for day.
@mycerebralamyloidangiopath4710 10 ай бұрын
Unfortunately that is not something I can do Marilynn. The light, even with sunglasses affects me badly and I get migrains. Plus in AUstralia your not supposed to go out without sunscreen. Something about us living under a hole in the ozone layer. Thanks for the suggestion though.
@marilynnlawler2363 10 ай бұрын
@@mycerebralamyloidangiopath4710 I can’t either with my melanoma so I have to supplement daily.