1. It is a hard disease on the victim, but I think it is equally hard, if not harder, on the family. My wife was diagnosed with bvFTD 8 years ago. She now needs round the clock supervision and help with all the activities of daily living. I think of it as climbing a mountain trail. You are in the rolling foothills now, soon will come peaks and valleys and then the hard steep slog to the end of the trail. You can only take one day at a time; one step at a time.

  2. you commented a while ago, when i made this post i was overwhelmed and i avoided reading through the comments here. i’m sorry i’m late in saying thank you, so much. thank you for reading my post and for giving me real, honest advice. it’s not right that you had to go through this too, but i’m so grateful to be able to learn from your experience.

  3. Without wanting to seem like I’m dismissing anyone’s experience I think dementia is ‘easier’ to accept when it happens when someone is ‘old’. (Although ‘easier’ seems the wrong word, nothing easy about any of it regardless of age)

  4. i hate knowing that others are experiencing this too but it’s comforting to hear that others are feeling similarly to me. it hurts so much, and there’s so little to say. but being told that this is hard and unfair makes me feel less crazy at least. thank you for your kind words and your understanding, it’s appreciated a ton

  5. your papa seems like such a kind person, i wish the best for you all

  6. hi there, i’m in a really similar situation. my dads in his 50s, im in my 20s. i feel so awful avoiding my family but it hurts so bad to think about, i just want to pretend it’s not happening. this is such a hard thing to experience, it’s natural to feel that way. i’m trying to both forgive myself and find ways to make time with my family easier. i want the time i have left with my dad to be something i can look back on for comfort and gratitude

  7. it is so normal and natural to be attracted to other trans people. the experiences you have in common and the way you relate to gender and attraction make this happen a lot! also, most gay people are mainly attracted to other gay people, rather than straight folks. our relationship to ourselves and our community dictate what we find attractive, being trans is no different!

  8. you can always take a break to evaluate, and try other things that are impermanent! maybe take a break from hrt right now, but femme it up with your clothes and hair! try indulging in things that you associate with womanhood and that bring you joy. there are lots of ways to play around with gender that aren’t hrt!

  9. Fluorescent lighting, specifically the compact fluorescent lighting. I used to work in a restaurant that used CFL bulbs(the long white lights) and I would constantly have issues with malar rashes and had to wear sunblock at work.

  10. oh shoot, i didn’t think about fluorescent lights! i’ve actually just started working in a hospital with only that super bright lights like that. that’s something to think about

  11. The triggering responses sound more like rosacea vs lupus. Lupus may have sun exposure relationships but that isn't why we get the butterfly rash.

  12. that’s honestly my concern, and why i was looking for info! i was wondering if rosacea could be an explanation for this, but with lupus as a backdrop i wanted to see if it was related. thanks for bringing this up!

  13. absolutely the case sometimes, its really truly disappointing. I think trans masculine + afab nonbinary people really have to be mindful of how they can and do perpetrate transmisogyny. we're susceptible to those biases too, and it makes trans spaces less safe

  14. I can't say for sure because I don't know you personally, but it sounds more to me like you were struggling with some sexual identity based OCD. this can include having intrusive thoughts about the same gender, obsessing about your sexuality and identity, and feeling intense doubt about who or what you like. helping intrusive thoughts often requires accepting the discomfort those thoughts cause or the accepting possibility of those thoughts being real. once you start to do that, and it sounds like you have, the thoughts have much less power than they did before. they may still happen, and you may still have obsessions over them, but they will improve. because that seems to be your experience, I would assume you're struggling with OCD, but are not gay.

  15. That sounds a lot like me except I have hetero thoughts. How do you know if they're intrusive though?

  16. intrusive thoughts are usually sudden and jarring, many people feel like they are uncontrollable or like they don’t belong to them

  17. I haven’t tested it. I’ll try and catch a bug soon and see how it reacts.

  18. I will! It’s still like 95 degrees outside right now so When it cools down I will go out looking for bugs! 😂

  19. that’s so exciting :)!! yeah it’s hot where i am too so be safe and stay cool!

  20. thank you both for responding! i appreciate the insight greatly. i think once my friend gets more information from the doctor i’ll sit down with them and talk about what i can do on a routine or what is helpful long term. i imagine asking over and over and saying “yes that would be helpful” or “no that wouldn’t help” is exhausting. i’ll be sure to keep all of your advice in mind as time goes on!

  21. wow! i googled blue bauer bowl with handles and the results are incredibly similar! i haven’t found the exact one but i would be surprised if this wasn’t the right brand. thanks so much!!

  22. I found this item being given away, it was originally used as a planter I think! I’m in the united states, central IL

  23. I knew nothing about dementia before I started trying to get my wife diagnosed at 55. For three and a half years her numerous doctors couldn’t find what was causing her mild cognitive impairment. At the end of 2019 a radiated glucose CT Scan came back with Lewy bodies. A little over a year ago her anger and violence was out of control and without additional tests, her neurologist changed the diagnosis to FTD. Antipsychotic drugs now only partially moderate her behavior.

  24. thank you so much for all of this wonderful information and for sharing about your wife. that sounds incredibly difficult, im sure it was heartbreaking. i’m thankful to have limited experience with other adults with dementia, albeit much older. you never think it could happen to your loved one at such an age

  25. Also, if you're in the US then you should know that Lewy Body Dementia is on the SSA's compassionate allowance list. It means that if you/he apply him for disability, and you tell the caseworker that his diagnosis is on the

  26. that’s very good to know! i’ll share this information with my mother, she’s been concerned about the disability application process. he just had to quit his job unfortunately, so this is great timing. thank you!

  27. My partner is somewhere around 4 and 6 on the FAST scale for Alzheimer's. She's had galloping anxiety and depression for years prior to diagnosis, though I wonder whether encroaching Alz hasn't contributed or even caused the issues. Benzos and Seroquel weren't helpful.

  28. you sound like an incredibly kind and patient partner, she is lucky to have you. i think i will be able to use some of the techniques with my LO. thank you for sharing

  29. My mum every now n then wakes up from a nap and asks what happened to where is her grandma (who brought her up) - I say but mum, she died 40 years ago already! NO, she says, MY GRANDMA - i tell her “”YES, MUM, you are 90 yrs old now - if your grandma was alive today she’d be like 140 years old!!! She passed away 40 years ago already!!”” She tells me “NO, you're confused and thinking of somebody else.”” lmao

  30. i dont think that’s the right way to deal with that kind of confusion, it’s probably very hard for her to hear that someone she loves is dead

  31. if you are attracted to trans women and cis women you are straight. like trans women doesn’t make you any less straight, because they’re women.

  32. it seems like you’re bisexual! sometimes preferences can change or vary day to day. not every bisexual person i’d 50/50 all the time, many have presences and many people feel more into men than women at one point and then the other way at other points. it happens!

  33. unfortunately it’s another exercise in accepting the unknown. you have to be able to say to yourself “maybe i’m not trans, that would be ok”

  34. probably both unfortunately, im actually in central IL too! i’m a white trans person, i am and look poor, and i am often followed or bothered in stores. i think it’s an unfortunate combination of racism, classism, and transphobia

  35. that’s wonderful!!! being trans is beautiful, and loving how you look as a trans person is such an incredible thing!!

  36. i think that anything that forces you to self reflect based on a group you don’t identify with would cause dysphoria. for me it is hard to hear about misandry because it reminds me that, externally, people associate me with those ideas even if i don’t want them too

  37. Misandry is "dislike of, contempt for, or ingrained prejudice against men (i.e. the male sex)" from the Oxford Languages dictionary. So any generalized statement putting down all men is misandry, just like any generalized statement putting down all women would be misogyny.

  38. the reality of misogyny reflects the society wide oppression of people perceived to be women due to that perception alone. arguing that misandry could ever equate to that in the world we currently live in based on the dictionary definition is ignorant. there is nothing society wide about misandry because it doesn’t reflect the massive power imbalance that actually exists

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