Expert Q&A: Rare dementias - Tues 3 March, 3-4pm
Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.
You can either post your question >here< or email them to us at email@example.com and we'll be happy to ask them on your behalf.
Hi Histru, welcome to TPHi,
I'm new here at TP. English is not my first language so please excuse my mistakes. My husband was diagnosed with alzheimer's in january - he's only 56 years old. The doctor said his mild short term memory problems could last for many years to come and need not get any worse. That sounds very optimistic from what I read ab this disease. My husband was diagnosed by a spinal tap and memory tests and also his mother suffered from Alzheimer's from the age of 64. My question to you is what your experince is regarding how fast the disease gets worse. Is it really true that this mild condition can go on for years without getting worse? Or was the doctor just trying to make us feel better. Thank you!
Hi meadow walker, welcome to TP. I think it very much depends on the level of awareness the sufferer has of their condition. From what I've read some are in denial so won't talk about it, some, like my husband who has vascular dementia, don't understand or can't articulate their feelings. It's so hard to find the person you have always shared everything with has effectively gone from your life, or so it seems. I think you just have to go along with whatever he is comfortable talking about. You will find loads of support on TP, so keep posting. xxxHi I am new here and looking for anyone that can help me understand is it usual for your partner to shut you out and not beable to talk to you how the dementia is making them feel? Feeling very alone
Morning meadowalker welcome to TP, you will get a lot of support on here. I second what Jinx has said, it really does depend on how far into the horrible decease he has got. My husband has VD and is totally unaware anything is wrong with his memory, albeit he really has no conversation but does know me and the family. Unfortunately he is now in a permanent CH as most nights he only has around 1-2 hours sleep which was impossible for me to look after him. Keep posting and more and more people will say how they are coping with the illness.Hi I am new here and looking for anyone that can help me understand is it usual for your partner to shut you out and not beable to talk to you how the dementia is making them feel? Feeling very alone
My husband has had AD for 5 years now and has never talked about his diagnosis. He thought he only had to take tablets and it would all get better. Unfortunately, he has Parkinsons Disease as well. I too feel very lonely and isolated, however, Talking Point has been like a breath of fresh air and I wish I had found it a long time ago. It just helps to know there are other people who are kind of in the same boat.Hi I am new here and looking for anyone that can help me understand is it usual for your partner to shut you out and not beable to talk to you how the dementia is making them feel? Feeling very alone
My husband has dementia and my son has spoken to him about it and he thinks it like just old age to an extent he now can't drive