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Thread: new here today

  1. #11
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    Hi Jeremy,
    Yes as your mum says it's Frontal Temprol Lobe Dementia... I have started the voice banking, you do 10 sentences send them off, then if ok you have 1600 sentences to do.. Ive got to start that bit fairly soon.. thank you for offer but we're fine..
    I think consultant is looking to do the PEG in about a year, still can swollow, but sometimes forget how to ?? strange? have liquid thickner, but ok in tea and coffee, but wouldnt recommand in milk...YUK!!
    Also, haven't been to Kings Hospital, I was seen at local hospital and Addenbrookes, Cambridge. Because Im 57 they decided to put me on the reseach programme, as FTD and MND is relitively rare, and it's not a genetic link.
    We love it at Glastenbury, what a small world you living there.. If only we'd known could have nipped in for a cuppa!!
    Keep in contact and tell your mum from me, here she can find understanding and maybe some guildance.
    Take care of each other
    Chebs and Al xx

  2. #12
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    May 2018
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    47
    Hi Jeremy,
    Please don't say sorry for asking lots of questions. You are a caring son with such a shock diagnosis for your mum.

    I hope your mum also has support from sensitive professionals. I am trying to make the most of everyday and not look too far ahead. That's my way of coping but everyone is different and we are taking advice and adaptions are being put in place before they become an emergency.

    Wishing you all the best.
    Love Debbie x

  3. #13
    hello chebs and hello to your husband too..... iexpect u have seen this already, but if u go to https.mymnd.org .uk...... there is a lot of info there on pegs, with videos of people who have had them fitted, and it shows how they work etc etc....it explains the different versions too....and al lthe people who have had them are saying get one...... do u intend to come to glastonbry again would be nice to meet u both.... ihave breifly again done some research concerning cbd oil....i suggest you perhaps do the same, there a lot of info in general to read and process,about this illness.

    the more we read on the subject here, the more informed we will be, try get time to watch the videos explaing and showing how the peg is fitted and works,.... then get ur self booked in i reckon....much love and respect for you both.i wil ltry and get more info form the shops that sell cbd oil in and around glastonbury.... have u been perscibed any medication yet?

    jeremy....stay strong, brave, focussed,and lean about the illness, . make memories,and change the things u can change, and live with the things you cannot....its a tough journey,but at least you will know what is coming and how to deal with, this forum contains so much info and guidence to other links about it all...Hope u coming to terms with it a bit more each day,,,,,and fight back.

    learn about the illness.....you know the saying..... know your enemy well.

  4. #14
    hi debs and al, i not very good with computers, i just send a note for u both and then found that u had replied already, im still finding my way around..... and im not sure if everyone can see what we write? ..i have read that cbd can help, i read it on a post someone who started using it straight away fromthe beginning, i cant rember where on here thou or if it was another link....i only know for sure m ymum has mnd with als, and even that i have to chk,,,,im standing back a bit because they are older and it will take them longer to find things out cozthey are just the wrong age to use the web as a resource....unlike ourselves.... ,i live in a vechicle thou, but i do have a spare room.....i live in a bedford coach from 1972,,,,so itsquite an old vechicle. lived in coaches for25years, did all the road protests in the 90s.... but anbyway, i have a spare double bed in a spare room, u welcome to come and visit u both...maybe check out ll the shops and the cbd situation info and where to get it, etc...jeremy xx

  5. #15
    Forum Member Terry's Avatar
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    Hi Jeremy ;;

    Everyone that is connected to the Web can read what is written here.

    If you send a private message to someone, it would only be seen by that person.

    Love Terry

  6. #16
    tahnkyou terry, u seem to be one of the experts here, and thankyou very much, i will be more careful with my wordings in the future.....im sort of caught between feeling guilty to be here as a non diagonosed person, and its easy to say lots of things whenu dont have the diaganosis.......

    i cant reallydo anything to help my mum at the moment..... so i thought i try and be here a bit, so i can support others.....i do apogise if i have offened anyone, and yes of coursei understand the peg is a diffcult decisiion for some.....i was just trying to remove some of the scareness,about the fitting,and how it works etc, thou i know see that the video link shows that all perfectly....im not so good with computers, so info on here i still finding a bit hard to find...........thanks for all ur help and guidence...jeremy xx

  7. #17
    Forum Member Terry's Avatar
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    Hi Jeremy;;

    I don't think you have offended anyone but best to build bridges with your parents before looking at details.

    Don't pressure them and take things slowly.

    Love Terry

  8. #18
    hi terry, and thanks again......i think like all people mum is probably in shock.....she always said she would live to a hundred......and a lot of the issues that mnd bring, she would have also been using a wheel chair, hard of hearing, probably need help using the loo, and washing, and probably slightly demented....... its really the age thing that must make it diffcult for so many others...... and very unfair offcourse.

    i was wondering when people are diagnosed, why they are not given the info about this site and forum.....perhaps even made to look at when they are told of their diagonosis......the info is all here....for everything practical certainly.....watching the posts and vidoes must remove alot of scareness from the journey?

    With regard to my mum and her husband. maybe she has known for longer then she is letting on..... pretty sure she taking rilozole, and has seen a speech therapist, her swallowing is very difficult, so im guessing she not really eating.... she can still walk, but a little wobbly, she was very tearfull and then mostly ok, still a twinlke in her,... but because she not been on here she and her partner wont know of the side effects concerning emotion, and wont have read the best way of combatting that by the citropan{its the wrong speeling but u know what i mean,

    tTis is quite sad thing with my mum, and i can only hope she does make it to this site...... but for others who are much younger its imperative they get to here asap..and get advice and and support from people like urself..quite how that process can be speeded up? how can happen thou i dont know.

    Mum has decided to not have any supplemented way of receiving food and nourishemnent... i sort of prefer that termanology to " feeding" dont you? Mum is a fighter, has been all her life....so im surprised and concerned that she doesnt want it, but we been told to only ring once a week,..so i will have to adhere to that.

    I have read abit about cbd.... and the other drug given by the charity... ch104{that mite be wrong too} what are your views on those?

    is it the case that when people read on here of others, for instance the man stuck in his flat, who was really having a hardtime, do others or the moderators reach out and help? when people are struggling? imguessing the differences in peoples lives ,incomes and housing, will have a tremondus impact on how they can deal with the diagonossis.....

    If people want to take the liquid rilozole, which im assuming is slightly easier to swallow, where would they get it, and how much does it costs, can u expalin the buddy system also....
    Since 35 people are diagonosed each week,and 35 pass over each week, is there a link for the passing along of some of the equipement , prefarably it being given to the people that cannot afford it. or who have to wait due to the cuts with nhs, ie the mobility equipement,lifts. any cars or vans that have been fitted for wheelchairs, the mobility scooters, the comoputertech, etc etc....

    terry please only reply when u have time too..... i hope that other people find you quick, with most likely more pressing issues than mine....

    Much respect my freind, jeremy xx

  9. #19
    hello debbie,... have ur looked at any info concerning cbd oil yet...... and also info concerning ch104 i think its called,,,,,,, how are you doing?.....i live in glastonbury so here already cbd oil is for sale in the health food shops! the other one is apparently given by a charity for free.... it has helped alot as far as i can gather from what ive read on here....i read so many threads i cant remeber the exact ones.....,.i will try and find the exact threads for you..... stay brave ,strong, and i think like you say, good planning in advance seems to be the key, for ALL issues around this enemy... of mnd........

    respect and love to u and the "we". jeremy xx

  10. #20
    Forum Member Terry's Avatar
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    Hi Jeremy;

    Your posts are so long and ask so many questions that it's maybe hard to answer all.

    You would be better off to posting on a thread when you are looking at, this way it would tie in .

    Some people are made aware of this forum soon after diagnoses but it is not probably as common as needed.

    You are right, there's plenty of excellent info and idea's on Mnd but it's quite hard to find some things.

    I do contact the Mnda directly when people post here and they are in trouble or I think it would help. They do really try help them and contact them but they can't say much back to me because of confidentiality rules.

    Liquid riluzole is for putting down a feeding tube although most people crush up tablets and mix. I don't think you could swallow the liquid happily.

    Mnd people do offer things here, sometimes free and sometimes at a good price. You get to know people on here so it's nice.

    Love Terry

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