So should we be proactive on the deme... - Hughes Syndrome A...
So should we be proactive on the dementia that APS may cause? Or would it be better not knowing what it is doing to our brain?
Question I am trying to answer myself....Always thought I didnt want to know my husband would look after me no matter what.... He died 2 years ago and Ive had to think hard about my options, DO not want to be a burden on my daughter , so do II find out or not????MY dad has vascular dementia so have first hand experience of what it can do.
Confused!!!!
Me too!
Jean
P.S. I'm watching my mom going through Alzheimers. So hard!
My mom died from Alzheimers a few months ago. The last few years of caring for her and helping my dad thru it have been harder than I could have imagined. At least it caused me to spend time with her, before she slipped away from recognizing me the last year, and time to say goodbye. She had thyroid and RA. I wonder what percentage of people with autoimmune problems develop Alzheimers versus the general public?
It's so hard watching my mum with Alzheimers. It's even harder watching my dad try to cope with her illness. Sometimes I wonder if I should ask my psychiatrist to give we a cognitive test. Maybe it's better not to know. Of course if I had Alzheimers I wouldn't be aware of my cognitive processing abilities.
Hi
I was DX with Mild Cognitive Impairment a year ago as my short term memory with confusion worried me also 2 grans and 1 great aunt with Dementia I like to know warts and my husband is very ill with heart and kidney failure we nearly lost him 6 times last year I know how hard it is for youI have 1 daughter at home and the other 2 live in different parts of the world I live day to day and each morning I wake I thank God and I visit this fantastic e daily this keeps me going take care sweetie x
How did you go about getting diagnosed? So scarcy isn't it. I'm not working now but when I was I'm sure my coworkers were wondering what's up with her.
Jean
I was trying to say I want to know warts and all lol x
I think its just best to try and prevent it, by keeping your INR at the range you should have.No smoking, Drink plenty of water at least don't become dehydrated.
Exercise I was told this made more difference than using brain training etc
Love Karen xx
Yes exercise is fine if you can get out of bed and walk I can't I did everything right if you are going to get it there is nothing that will stop it unless they find a cure as I said live day to day and enjoy life as best you can Jean if you need to chat just email me x
My doctor told me to use my brain. She said to do things that require brain power, such as math or memory games..
Renae
Jean, your question certainly resonates with me -- though for me it is not so much a question. I am only 57. But. The arrows pointing to dementia in my later years are too prominent to ignore: 1, every single female member of my Mother's family is diagnosed with Alzheimmers @ 75. Every. Single. One. 2, I have had multiple mini strokes before my diagnosis with APS 3, I have APS, and 4 I have over the last year began to notice more gaps in short term memory.
Since dementia is "the family disease" I do have a perspective on how to live knowing what is likely in store for you:
Exercise, tutor -- particularly maths as this will exercise a part of your brain which probably doesn't get used much, sign up for one of the BBC foreign language programs And drink the water, and vary your experience. A wise friend of mine says "Make it a rule for yourself: when life gives you a choice to stay in your comfort zone or do something outside your comfort zone, -- go outside."
Then theres all the stuff. I have gotten in the habit of doing once-a-year purges. I start in one corner of my house and toss and bundle up for the church rummage sales. If some object has a significant family history then I type up the story behind the object and tape it to the bottom.
Now this is not to say that my house is pristine -- its still got a lot of junk. But I do try to move in the right direction so that my heirs do not have to deal with an overwhelming burden of stuff when they begin to unwind my life. (My Great Aunt Millie collected owls -- stuffed and figurines. She left behind her collection of somewhere over 500 of them. -- And yes, I took one of them. Just one.)
Make your medical preferences clear. (I have repeatedly said that a nursing home is OK with me if thats where I belong, only, if she is still alive DO NOT put me in the same room as my Mother!!!!)
I have been telling my husband its time to sell this house (in the suburbs -- no bus line) and get an apartment in the city, near a grocery store and walk-to entertainment. So far he is resisting me, but now that his father is in decline he may come to reason.
Takt it one year at a time -- or one month at a time -- or one day at a time. And also remember, "Life is what happens when you've made other plans. Maybe I'll live to be a ripe old 98 with no cognitive impairment at all.
Remember -- we all die. (Hows that for ending on a cheerful note?)
Gina
You are like me have a need to planing for the future. I like to be prepared for what's ahead. But yes in reality we must live day by day and week by week.
I'm turning fifty this year so I'm not far behind you. I'm helping care for my mother with Alzheimers and son that has disabilities, So I'm distracted somewhat. Yet my exhaustion and aches and pains show up often.
I attempt to forget the white matter disease that was found on my MRIs. I tell myself that if white matter crap keeps progressing the new Jean will be even funnier than I am now.
We moved to a bigger house last spring. Our house has lots of stairs. Probably not a smart idea but I love my house. It's perfect for a family with two teenage boys. Ranch style homes are hard to find in Madison, Wisconsin. My husband keeps reminding me we will have to move one day,
Jean
I spoke to my neurologist about this the other day at a consultation and he says its he blockages due to blood clotting that eventually leads to dementia but it shouldnt be something to worry about if your on blod thinners as hypothetically your blood shouldnt be able to clot if on it - so I wouldn worry. I do know that not everyone responds to blood thinners and still develop clots but the very small vessels in the brain that hughes semms to target my neurologist says should be protected by warfarn etc... My mind is at rest on the matter anyway-hope yours gets there too. As for alzheimers I know only too well the heartache it causes, my mother and grandmother both dead by 50 due to a genetic form of alzheimers called Picks, which is originally why I was under a neurologist. I have a 50/50 chance of developing this and in the next ten years (im 34) I opted to have samples taken to see if i was a match,but they couldnt locate the gene in my mother to find it in me so am none the wiser - and im glad now it is that way. You can either live with the 50 chance of getting it, or live by the way ive chosen to and say well theres a 50 chance I wont get it, and thats the only way i can get through it - especially having young children and even a thought that they could have those same chances. I will make a living will, and book flights to switzerland at the first signs though x
Thanks so much you made me feel more positive.
Jean
I just re-read comments and I did not want to come across too negative about my experience, I had APLS many years before being diagnosed and we don't know if most of the damage happened before I started on the anticoagulant, I suspect it was. So Emmas right, the warfarin should protect you.
I would say yes, definitely be proactive, however APLS causes risk of dementia through its effects on the brain's blood supply (vascular).
The clots can cause lesions but the interruption in blood supply can also cause atrophy, and a bleed can also happen if the inr goes too high. I have had the atrophy, lesions and a sub dural heamatoma.
If your know or suspect the condition is affecting your brain it is important to be very proactive on ensuring your treatment is closely monitored, that your INR test result is always accurate (some people have venous samples to be accurate) and talk to your doctor about risks tat you are taking if your INR falls or your treatment is discontinued. MRI scans are vital to see if the condition has affect your brain.
Alzheimer's is not caused by the same processes as vascular dementia.
I didn't consider having blood too thin and having bleeds in the brian. My MRI's have possibly indicated vasculitus. Yikes!
Have you talked to your doctors about treatment for the vasculitis? If it is cerebral vasculitis you maybe need some specific treatment for that.
If you are getting monitored properly you should be ok.
I'm only 37 and pondered the same thing for the last 5 years or so since I get brain fog and more recently occasional slurred speech. I finally decided to bite the bullet and had a MRI last week. Ends up it was normal with the only thing being a chronic right basal ganglia infarct that I've had for years. I feel better after knowing that. We get so paranoid with this disease and it's scary! Anyway, I think the only thing we can do is keep our INRs up but not so high that we risk a bleed. I keep mine between 3-3.5. I work at a hospital and higher INRs scare me. We had a lady die the other day because she slipped on some water in her kitchen, fell, hit her head, and developed a massive subdural hematoma. Her INR was 3.5! Scary!!!
hi
Just to add..... I thought at 56 prior to diagnosis that I was getting Alzheimers. However, diagnosis and warfarin at a 4-4.5 levels means minimal symptoms now. I notice as soon as I drop!
Blessings Ann
Wow 4-4.5 is a high level. I'm glad it's working for you. Becareful not to fall or get injured.
Jean
I got really upset recently as I accidentaly discovered the link between APS and dimentia, as I've been having memory problems for a good while it frightened me, my dad also has memory problems but thankfully no history of APS. I'm 42 and I'm just on aspirin at the moment. What is the INR that youre all talking about?
