{"id":3464,"date":"2021-06-24T11:54:44","date_gmt":"2021-06-24T11:54:44","guid":{"rendered":"http:\/\/blogs.cardiff.ac.uk\/CESI\/?p=3464"},"modified":"2022-04-13T15:46:22","modified_gmt":"2022-04-13T15:46:22","slug":"learning-and-teaching-conference-2021-what-matters-to-me-blog-2","status":"publish","type":"post","link":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/learning-and-teaching-conference-2021-what-matters-to-me-blog-2\/","title":{"rendered":"Learning and Teaching Conference 2021- What Matters to Me (Blog 2)"},"content":{"rendered":"\n
\"\"<\/figure>\n\n\n\n

I have learned through my exposure to others with Dementia that no matter what type we have, just like in real life we are all different and there is no one way to describe the effect of the illness or how best to treat those who suffer from it.  That makes Dementia Care difficult but getting it right is essential. Research and the voices of those with Dementia are so important. Until we find a cure, and I remain positive that one day they will, Care, Respect and Dignity are top of my Agenda. <\/p>\n\n\n\n

The most common expression and emotion that is so often expressed by those with Dementia is \u2018I\u2019m still me\u2019! I hear it in discussion groups almost every time I have been in one and there have been many.<\/p>\n\n\n\n

I was in my mid-fifties when I got my diagnosis but sadly I have met people in their forties with Dementia in one form or another. My mission as I see it now, is as a \u2018warrior\u2019 for those with Dementia and other Mental Illness. I\u2019ve put myself \u2018out there\u2019 in the Media, Conferences, Strategy Launches, Political Initiatives, Public Services, Charity Events, Advisory Committees  and Higher Eduction Lecturing and there is no going back. I am not embarrassed or ashamed of my illness, I am what I am, people like myself deserve a voice and deserve the same Human Rights as everyone else, it just a shame that in some circumstances they still don\u2019t have them.<\/p>\n\n\n\n

Strange Problems began to occur in my life that I hadn\u2019t experienced in such magnitude. Stress, reading things again, missing out words, jumbled sentences, temper outburst, uncomfortable in groups, lack of concentration in meetings, sleeping for 48 hours, avoiding presentations, not enjoying the job I loved, relying on others more, masking shortcomings, making mistakes, losing things, losing my way, hallucinations, over whelming phantom smells, slips and falls, bad balance and on occasion slurred speech.<\/p>\n\n\n\n

When I went to see my GP I could see a little concern in his face, when I think about it now, but nothing too alarming and instead of those magic pills I was expecting I was being referred to to a Neurologist at the Hospital.<\/p>\n\n\n\n

After those inevitable test, brain scans, blood and lumbar punches I could see that words were going to come out of his mouth that could never be taken back and will change my life forever I know it. Then the words were uttered, scans show that you have lesions on your brain and you have Dementia. With a swallow I asked if it is curable or can be stopped, but I know the answer, it\u2019s a no. <\/p>\n\n\n\n

There are many types of Dementia is the next snippet of information I am given as if that might provide a little reassurance. What type do I have Doctor? Well based on the symptoms it is my opinion that you have what is called Lewi Body Dementia. Do have any more questions I am asked? I have hundreds but after that news, delivered in a very professional, honest but brutal way, I just wanted to get out of there. In silence I walk out of the Hospital and take the ride home with my Partner saying not a word, just trying to digest bravely what I\u2019ve just been told and how do I tell other people, or even do I tell other people.<\/p>\n\n\n\n

I\u2019m still young I think to myself, this happens to old people, not ambitious go getting guys like me, living a smoke free and alcohol free life, conscious of keeping my fitness and health in check, intelligent, able to survive on just a few hours sleep a night, proud to work long hours and who has always put studying and job above all else. Maybe that\u2019s been my problem because in the end the personal cost to me and those I love may be to much to bare?<\/p>\n\n\n\n

Life can inevitably throws us curve balls, unexpected circumstances that remind us to expect the unexpected. I hadn\u2019t seen this one coming but as it is now the number one killer in the UK, overtaking Cancer and Heart Disease, which thankfully have more treatments, why not me? My concern was that this condition is intimately connected to who we are – our personality, our character, our soul, if you like.\u201d<\/p>\n\n\n\n

Given these fears I want Medical Staff to see me not my diagnosis. I want to know that when I visit my clinics, A & E or have stays in Hospital, people will understand why my Dementia sometimes makes me feel agitated and depressed. I want people to still talk to ME and not my Carer, because they assume I will not understand what they are saying and be prepared to repeat some requests or instructions without getting irritated. Most of all what matters to me is that I am able to feel safe and that I can live well with Dementia\u2019.<\/p>\n\n\n\n

Written by Andy Woodhead<\/p>\n\n\n\n

To find out more about this topic and to hear from Andy, join our story session- \u201cWhat Matters to Me\u201d\u2026 Patient and Public Involvement on ZOOM \u2013 at 11:30am on Fri 2 July (part of our Learning and Teaching Conference 2021).\u00a0Register for the conference<\/a><\/p>\n\n\n\n

\n\n\n\n

Yn sg\u00eel fy mhrofiad o ddementia, yn ogystal \u00e2 phrofiad pobl eraill ohono, rwy wedi dysgu ein bod ni i gyd yn wahanol, ni waeth pa fath o ddementia sydd arnon ni, yn union fel sy\u2019n digwydd mewn bywyd go iawn ac nid oes un ffordd o ddisgrifio effaith y salwch na’r ffordd orau o drin y rheiny sy’n dioddef ohono.  Mae hynny’n peri bod Gofal Dementia yn anodd ond mae cael y gofal yn iawn yn hanfodol. Mae ymchwil a lleisiau’r rheiny sydd \u00e2 dementia mor bwysig. Hyd nes y byddwn yn dod o hyd i iach\u00e2d, ac rwy\u2019n parhau i fod yn gadarnhaol y byddan nhw\u2019n gwneud hyn un diwrnod, Gofal, Parch ac Urddas sydd ar frig fy agenda. <\/p>\n\n\n\n

Y mynegiant a’r emosiwn mwyaf cyffredin y bydd y rheiny \u00e2 Dementia yn ei fynegi mor aml yw mai ‘Yr un person ydw i o hyd’! Rwy\u2019n clywed hyn mewn grwpiau trafod bron bob tro imi gymryd rhan ynddyn nhw, a bu llawer ohonynt.<\/p>\n\n\n\n

Roeddwn i yng nghanol fy mhumdegau pan gefais fy niagnosis ond yn anffodus rwy wedi cwrdd \u00e2 phobl yn eu pedwardegau sydd \u00e2 dementia ar ryw wedd neu’i gilydd. Fy nghenhadaeth fel rwy\u2019n ei gweld bellach, yw bod yn ‘rhyfelwr’ dros y rheiny \u00e2 dementia a mathau eraill o salwch meddwl. Rwyf wedi bod yn eithaf amlwg yn y cyfryngau ac mewn cynadleddau, digwyddiadau lansio strategaethau, mentrau gwleidyddol, gwasanaethau cyhoeddus, digwyddiadau elusennol, pwyllgorau cynghori a darlithio ym maes Addysg Uwch a does dim troi yn \u00f4l. Nid oes gen i gywilydd o fy salwch neu\u2019r hyn ydw i, mae pobl fel fi yn haeddu llais ac yn haeddu’r un hawliau dynol \u00e2 phawb arall, ond mae’n drueni nad oes ganddyn nhw o hyd yr hawliau hyn o dan rai amgylchiadau.<\/p>\n\n\n\n

Dechreuodd problemau rhyfedd ddigwydd yn fy mywyd nad oeddwn i wedi eu profi cymaint o\u2019r blaen. Straen, darllen pethau ddwywaith, colli geiriau, brawddegau yn gymysg i gyd, ffrwydrad tymer, bod yn anghyfforddus mewn grwpiau, diffyg canolbwyntio mewn cyfarfodydd, cysgu am 48 awr, osgoi gwneud cyflwyniadau, peidio \u00e2 mwynhau’r swydd roeddwn i’n ei charu, dibynnu ar bobl eraill yn fwy, cuddio diffygion, gwneud camgymeriadau, colli pethau, colli fy ffordd, gweld pethau nad oedden nhw yno, arogli pethau nad oedden nhw\u2019n bodoli ond a oedd yn fy llethu, llithro a chwympo, cydbwysedd gwael ac weithiau lleferydd aneglur.<\/p>\n\n\n\n

Pan euthum i weld fy meddyg teulu, roeddwn i erbyn meddwl yn gallu gweld ychydig o bryder yn ei wyneb, ond dim byd oedd yn rhy frawychus, ac yn lle’r pilsenni hud hynny roeddwn i’n disgwyl eu cael, cefais i fy nghyfeirio at niwrolegydd yn yr ysbyty.<\/p>\n\n\n\n

Ar \u00f4l y profion, y sganiau o\u2019r ymennydd a\u2019r achosion anochel hynny o dynnu gwaed a hylif o\u2019r meingefn, roeddwn i’n gallu gweld bod geiriau’n mynd i ddod allan o’i geg na fyddai modd eu cymryd yn \u00f4l byth ac y bydd hynny yn newid fy mywyd, fel rwy’n ei adnabod, am byth. Yna llefarwyd y geiriau, mae\u2019r sganiau’n dangos bod gennych chi namau ar eich ymennydd a bod Dementia arnoch chi. Ar \u00f4l imi gymryd llwnc, gofynnais i a oedd modd ei wella neu ei atal, ond rwy’n gwybod yr ateb, sef \u2018nac oes\u2019. <\/p>\n\n\n\n

Mae yna lawer o fathau o ddementia, yw’r pwtyn nesaf o wybodaeth a roddir imi, gan feddwl y gallai hynny dawelu fy meddwl rywfaint. Pa fath sydd gen i, ddoctor? Wel, yn seiliedig ar y symptomau, fy marn i yw bod arnoch chi\u2019r hyn a elwir yn Ddementia Cyrff Lewi. Oes gennych chi ragor o gwestiynau? gofynnodd imi. Cannoedd oedd gen i, ond ar \u00f4l y newyddion hynny, a gefais mewn ffordd hynod o broffesiynol, gonest ond creulon, y cwbl roeddwn i eisiau ei wneud oedd dianc oddi yno. Yn dawel, rwy’n cerdded allan o’r Ysbyty ac yn mynd adref gyda fy mhartner heb ynganu\u2019r un gair, dim ond ceisio treulio’n ddewr yr hyn rwy newydd ei glywed a dechrau meddwl am sut bydda i\u2019n rhoi gwybod amdano i bobl eraill, neu ydw i’n dweud wrth bobl eraill hyd yn oed.<\/p>\n\n\n\n

Rwy’n ifanc o hyd, rwy’n dweud wrtho i fy hun, mae hyn yn digwydd i hen bobl, dyw hyn ddim yn digwydd i ddynion uchelgeisiol a blaengar fel fi sy\u2019n byw bywyd heb ysmygu nac yfed alcohol, sy\u2019n ymwybodol o gadw golwg ar fy ffitrwydd ac iechyd, sy\u2019n ddeallus, sy\u2019n gallu goroesi ar ond ychydig o oriau o gwsg bob nos, sy\u2019n falch o weithio oriau hir ac sydd bob amser wedi blaenoriaethu ei astudiaethau a\u2019i swydd uwchlaw popeth arall. Efallai mai dyna oedd fy mhroblem oherwydd, erbyn diwedd y dydd, efallai y bydd y gost bersonol imi a’r rhai rwy’n eu caru yn ormod imi ei ysgwyddo?<\/p>\n\n\n\n

Mae’n anochel y bydd sawl tro trwstan mewn bywyd, sef yr amgylchiadau annisgwyl hynny sy’n ein hatgoffa y dylen ni ddisgwyl yr annisgwyl. Doeddwn i ddim wedi gweld hyn yn dod ond gan mai dementia bellach yw’r llofrudd mwyaf yn y DU, gan oddiweddyd canser a chlefyd y galon, y mae ganddyn nhw bellach fwy o driniaethau ar eu cyfer diolch byth, pam ddim yn fy achos i? Fy mhryder oedd bod y cyflwr hwn yn rhan annatod o\u2019r hyn ydyn ni \u2013 ein personoliaeth, ein cymeriad, ein henaid, os mynnwch chi. \u201d<\/p>\n\n\n\n

O ystyried yr ofnau hyn, rwy eisiau i staff meddygol fy ngweld i, nid fy niagnosis. Rwy eisiau gwybod y bydd pobl yn deall, pan fydda i\u2019n ymweld \u00e2 fy nghlinigau, adrannau damweiniau ac achosion brys neu\u2019n aros yn yr ysbyty, pam mae fy nementia weithiau yn peri imi gynhyrfu a theimlo\u2019n isel fy ysbryd. Rwy eisiau i bobl barhau i siarad \u00e2 FI ac nid \u00e2 fy ngofalwr gan eu bod yn tybio na fydda i wedi deall yr hyn y maen nhw\u2019n ei ddweud ac i fod yn barod i ailadrodd rhai ceisiadau neu gyfarwyddiadau heb fynd yn flin. Yn bennaf oll yr hyn sy’n bwysig imi yw fy mod i’n gallu teimlo’n ddiogel ac y galla i fyw’n dda \u00e2 dementia ‘.<\/p>\n\n\n\n

Ysgrifennwyd gan Andy Woodhead<\/p>\n\n\n\n

I gael gwybod mwy am y pwnc hwn a chlywed gan Andy, ymunwch \u00e2’n sesiwn stori- \u201cYr hyn sy’n bwysig imi\u201d\u2026 Cleifion a’r Cyhoedd yn cymryd rhan ar ZOOM \u2013 am 11:30 ddydd Gwener 2 Gorffennaf (rhan o’n Cynhadledd Dysgu ac Addysgu 2021). Cofrestru ar gyfer y gynhadledd<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"I have learned through my exposure to others with Dementia that no matter what type we have, just like in real life we are all different and there is no […]","protected":false},"author":1799,"featured_media":3449,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[391],"tags":[],"custom_author":[],"class_list":["post-3464","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-lt-conference-2021"],"lang":"en","translations":{"en":3464},"jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p4KqgK-TS","meta_box":[],"jetpack_featured_media_url":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-content\/uploads\/sites\/286\/2021\/06\/male-experienced-doctor-consulting-his-young-femal-2-scaled.jpg","pll_sync_post":[],"_links":{"self":[{"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/posts\/3464","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/users\/1799"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/comments?post=3464"}],"version-history":[{"count":2,"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/posts\/3464\/revisions"}],"predecessor-version":[{"id":3472,"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/posts\/3464\/revisions\/3472"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/media\/3449"}],"wp:attachment":[{"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/media?parent=3464"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/categories?post=3464"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/tags?post=3464"},{"taxonomy":"custom_author","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/LTAcademy\/wp-json\/wp\/v2\/custom_author?post=3464"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}