Hello Everyone

Hi im new to this group I am trying to find out as much dementia I can I have recently been told I have early on set of the disease . Its took a couple of weeks of the why me feeling and Im now at the 'Finding out what to expect stage', I have worked in Mental health as a Special Needs Learning Support Worker for 20 yrs and I intend to do it for as long as I can .

At the moment I think I am still in the denial stage as this condition is one tat affects different areas of your life but not in a way that at my stage of the illness people cant believe I have this terrible disease.

Im hoping that there are some kind carers out there that can me learn all i can about this diease

Thanks for taking time to answer me or read this message , and look forward to your replys 2

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13 Replies

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  • Hi, i was diagnosed with early onset vascular dementia, in 2014 but i can go back st least another 3 years so id been 51 when it first started,you need to learn to accept your illness and once you learn to accept you can get on with life.

    If you want you can message me.

    Philip

  • my mother in law has just been diagnosed with vascular dementia. Unfortunately I think she is a lot further into this problem. Any advise would really help x

  • Try Virgin Coconut Oil which you can buy from amazon.co.uk and/or Holland & Barrett. Let me know about progress and/or otherwise.

  • Hi and welcome. My husband was diagnosed with dementia last year. It is very difficult but I have found ways to help him. He is so much more able to cope if he keeps busy (both mind and body). We try to get out and about as much as possible and when at home he plays solitaire etc on the computer. We try to keep seeing friends and relatives.

    Hopefully it will be a long time before you have many symptoms but it is good to be prepared. When you start to forget things, keep a big desk diary in a very prominent place and write down everything (or use a big board on the wall). Use your phone to remind you of times you need to do things. Label your cupboards, leave yourself notes about how to do things if you find you are forgetting.

    We survive on notes everywhere and it really does help.

    Good luck and I hope you will be fine for a long time to come. It is a very unpredictable disease.

  • Hi, it can be a big struggle for our carers and it a struggle for us too, the word I use is terrifying because we know where we are going but even then we don't we forget, I think you are Angels all of you carers.

    My wife is my carer, even though we live separately because of stress lols on both sides so I found a lovely little flat at a sheltered housing .

    There are depending on where you live, ADMIRAL SPECIALIST NURSES, who I believe are fantastic but I'm in the north west so none in my area. Anyway w keep going lol with a smile as we go. Lol.

    please keep doing the wonderful things you are doing.

    Philip xx

  • Start him on Virgin Coconut Oil which you can buy from amazon.co.uk &/or Holland Barrett. It is reputed not to make a bad situation worse - research about it The Internet.

  • Hi

    My husband and I are fairly near the start of his dementia journey. You're right to read up about it. I find the more I learn the more understanding I am.

    Routine is a great thing for us. He tries to keep things in a certain place so he can find them for instance. Plenty of sleep helps.

    I find tiredness is an issue for us both. For me it's when my patience vanishes and I snap. The late evenings are a fraught time for him. He spent ages wandering around looking for something last night and didn't want my help. He hasn't really accepted it yet and isn't interested in finding out. Of course I found his glasses in 2 minutes when he finally accepted my help. Luckily I know that this behaviour is part of dementia and I just go with the flow.

    I find it's good when we keep doing things and going places. I find that the wee grandchildren are great with him and help. They just accept whatever happens and enjoy themselves wherever we are.

    Best wishes for your journey but you have the right idea to find out and to tell people.

  • Start both of you on Virgin Coconut Oil immediately; I had having been diagnosed since July 2016. You can buy it from amazon.co.uk &/or Holland & Barrett. Research about in online - just type in Coconut Oil, beneficial and maleficial effects.

  • Hi there elliem, I read a very interesting article many years ago where a man had early onset Alzheimers and he cured himself by omitting aluminium from his diet. I'm not saying that this would work for everyone but it would certainly be worth looking into and cutting out as much aluminium as possible. I no longer buy normal antiperspirants as they contain aluminium; I buy crystal antiperspirant and get that from Holland & Barrett (I'm in the UK).

    Have a look at the interesting article below:

    articles.mercola.com/sites/...

  • A very good friend of mine, who was diagnosed with Alzheimer's 3 years ago and she found that nothing changed and they did a new type of scan, developed for Alzheimers only, so off she went and they said they got it wrong lol.

    She still comes to our support group as a friend and volunteer.

    Great news.

  • Hi everyone thank you for you messages its been so helpful and to know that. There are people I can talk too when I'm down I hope your all well xx

  • Hi elliem, Welcome to this community. It looks like you've had some really good advice here already from some of our users with similar experiences. This is what this community forum is about, supporting each other and having a safe place to explore and ask questions and find information. I appreciate that you want to get ahead and learn more about your condition. Do remember everyone's experiences are individual, personal to them and can vary. These valuable communities are an adjunct and shouldn't replace diagnosis or condition specific help provided by your GP and specialist services. Keep those dialogue channels open with your Healthcare professionals (HCPs). Also, look at evidence-based information from sites e.g:

    NHS Choices: nhs.uk/Conditions/dementia-...

    Age UK: ageuk.org.uk/health-wellbei...

    Well done for taking the first step in making contact with us. Keep in touch, Best Wishes.

  • Hi So sorry to hear this but the care now is a lot better than it use to be and tablets can help keep it at bay. Keep your mind and body active. You will find good advice on this site.

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