{"id":801,"date":"2024-06-09T19:00:07","date_gmt":"2024-06-09T17:00:07","guid":{"rendered":"https:\/\/kampanj.expressen.se\/hjarnfonden\/?p=801"},"modified":"2024-06-09T19:45:45","modified_gmt":"2024-06-09T17:45:45","slug":"fredriks-ex-fru-fick-als-vi-befann-oss-i-dodens-vantrum","status":"publish","type":"post","link":"https:\/\/kampanj.expressen.se\/hjarnfonden\/fredriks-ex-fru-fick-als-vi-befann-oss-i-dodens-vantrum\/","title":{"rendered":"Fredriks ex-fru fick ALS: \u201dVi befann oss i d\u00f6dens v\u00e4ntrum\u201d"},"content":{"rendered":"

[et_pb_section fb_built=”1″ disabled_on=”off|off|off” admin_label=”HERO” _builder_version=”4.25.1″ _module_preset=”default” use_background_color_gradient=”on” background_color_gradient_stops=”rgba(0,0,0,0) 55%|rgba(0,0,0,0.47) 100%” background_color_gradient_overlays_image=”on” background_color_gradient_start=”rgba(0,0,0,0)” background_color_gradient_start_position=”31%” background_color_gradient_end=”rgba(0,0,0,0.65)” background_image=”https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-content\/uploads\/2024\/06\/mental-pedal-2.jpg” background_enable_video_mp4=”off” background_video_width=”100%” min_height=”650px” min_height_tablet=”500px” min_height_phone=”350px” min_height_last_edited=”on|phone” height=”100vh” max_height=”1000px” max_height_tablet=”900px” max_height_phone=”600px” max_height_last_edited=”on|tablet” background_last_edited=”off|desktop” background_image_tablet=”https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-content\/uploads\/2024\/05\/hf-petra-1-small.jpg” background_image_phone=”https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-content\/uploads\/2024\/05\/hf-petra-1-small.jpg” background_enable_image_tablet=”on” background_enable_image_phone=”on” background_position_tablet=”center” background_position_phone=”center” background_enable_video_mp4_phone=”off” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_row _builder_version=”4.25.0″ _module_preset=”default” positioning=”absolute” position_origin_a=”bottom_center” position_origin_r=”bottom_right” vertical_offset=”20px” vertical_offset_tablet=”” vertical_offset_phone=”2rem” vertical_offset_last_edited=”on|desktop” width_tablet=”80%” width_phone=”90%” width_last_edited=”on|phone” max_width=”900px” custom_padding=”||0px||false|false” locked=”off” global_colors_info=”{}” width__hover_enabled=”off|desktop” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text content_tablet=”<\/p>\n

D\u00e4rf\u00f6r p\u00e5verkar k\u00f6net
n\u00e4r du f\u00e5r din diagnos<\/h1>\n

” content_phone=”<\/p>\n

D\u00e4rf\u00f6r p\u00e5verkar k\u00f6net n\u00e4r du f\u00e5r din diagnos<\/h1>\n

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Fredriks ex-fru fick ALS: \u201dVi befann oss i d\u00f6dens v\u00e4ntrum\u201d<\/h1>\n

[\/et_pb_text][et_pb_icon font_icon=”3||divi||400″ icon_color=”#FFFFFF” icon_width=”55px” icon_width_tablet=”55px” icon_width_phone=”50px” icon_width_last_edited=”on|phone” _builder_version=”4.25.0″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_icon][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|tablet” admin_label=”Artikel\/text 1″ _builder_version=”4.19.0″ _module_preset=”default” background_color=”#FFFFFF” custom_padding=”50px||50px||true|false” custom_padding_tablet=”50px||50px||true|false” custom_padding_phone=”40px||40px||true|false” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_row custom_padding_last_edited=”off|phone” _builder_version=”4.25.0″ _module_preset=”default” background_enable_color=”off” width_tablet=”80%” width_phone=”90%” width_last_edited=”on|phone” max_width=”640px” max_width_last_edited=”off|desktop” module_alignment=”center” custom_margin=”||||false|false” custom_padding=”0px|0px|0px|0px|false|true” custom_padding_tablet=”|60px||60px|true|true” custom_padding_phone=”|30px||30px|true|true” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text _builder_version=”4.25.1″ _module_preset=”default” text_font=”Arial|600|||||||” text_text_color=”#141414″ text_font_size=”18px” text_line_height=”1.5em” header_3_font=”di-benton-bold||||||||” header_3_text_color=”#222222″ header_3_font_size=”19px” header_3_line_height=”1.5em” custom_padding=”||22px||false|false” custom_padding_tablet=”||22px||false|false” custom_padding_last_edited=”off|desktop” text_font_size_phone=”18px” text_font_size_last_edited=”off|desktop” text_line_height_tablet=”” text_line_height_phone=”” text_line_height_last_edited=”on|desktop” header_3_font_size_tablet=”” header_3_font_size_phone=”18px” header_3_font_size_last_edited=”on|phone” border_width_bottom=”1px” border_color_bottom=”rgba(0,0,0,0.15)” global_colors_info=”{}” theme_builder_area=”post_content”]N\u00e4r Susan fick diagnosen ALS var det en sj\u00e4lvklarhet f\u00f6r hennes ex-man Fredrik och deras d\u00f6ttrar att bli hennes personliga assistenter den sista tiden i livet. De \u00e5ngrar inte sitt val, men \u00f6nskar att st\u00f6det fr\u00e5n samh\u00e4llet hade varit b\u00e4ttre.[\/et_pb_text][et_pb_text _builder_version=”4.25.1″ _module_preset=”default” text_font=”Arial||||||||” text_text_color=”#141414″ text_font_size=”18px” text_line_height=”1.5em” header_font_size=”24px” header_2_font=”Siri-Expressen||||||||” header_2_text_color=”#222222″ custom_padding=”|20px|||false|false” custom_padding_tablet=”|0px|||false|false” custom_padding_phone=”” custom_padding_last_edited=”on|desktop” hover_enabled=”0″ header_2_font_size_tablet=”” header_2_font_size_phone=”23px” header_2_font_size_last_edited=”on|phone” global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″]<\/p>\n

Susan hade en l\u00e4ngre tid f\u00f6rst\u00e5tt att n\u00e5got var v\u00e4ldigt fel och n\u00e4r hon h\u00f6sten 2021 fick diagnosen ALS bekr\u00e4ftade det hennes egna misstankar.<\/p>\n

\u2013 F\u00f6r oss andra blev det en chock, men mamma hade redan hunnit bearbetat sin sorg och fanns d\u00e4r som v\u00e5rt st\u00f6d. Vilket k\u00e4ndes konstigt, det var ju hon som var sjuk, ber\u00e4ttar Susans dotter Josefin, som d\u00e5 var 22 \u00e5r.<\/p>\n

Till en b\u00f6rjan fick Susan hemtj\u00e4nst, men n\u00e4r F\u00f6rs\u00e4kringskassan beviljat \u00e5tta timmars personlig assistans per dygn fr\u00e5gade hon sin ex-man Fredrik Lundgren om han ville bli hennes assistent. Han sa ja direkt.<\/p>\n

\u2013 Jag tvekade aldrig. \u00c4ven om vi var skilda var vi n\u00e4ra v\u00e4nner och hade inte minst barnen ihop. Vi hade \u00e4ven gjort m\u00e5nga resor tillsammans och de h\u00e4r m\u00e5naderna blev ocks\u00e5 en slags resa.<\/p>\n

Men \u00e4ven om Susan endast f\u00e5tt \u00e5tta timmars beviljad assistanstid betydde det inte att hon klarade sig sj\u00e4lv dygnets \u00f6vriga timmar. N\u00e4r Josefin och hennes lillasyster Ida jobbat klart f\u00f6r dagen \u00e5kte de d\u00e4rf\u00f6r till sin mamma och avl\u00f6ste Fredrik.<\/p>\n

\u2013 Vi hj\u00e4lpte mamma med middagen och lade henne, hon klarade ju inte det sj\u00e4lv. Sedan sov vi hos henne.<\/p>\n

EXTERN L\u00c4NK: L\u00e4s mer om ALS<\/strong><\/a><\/p>\n

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Hj\u00e4rnfonden<\/h3>\n

Hj\u00e4rnfonden arbetar f\u00f6r ett samh\u00e4lle d\u00e4r alla hj\u00e4rnor n\u00e5r sin fulla potential, fria fr\u00e5n sjukdomar. Det m\u00f6jligg\u00f6rs genom insamling och finansiering av hj\u00e4rnforskning, samt kunskapsspridning och opinionsbildning. De senaste 25 \u00e5ren har Hj\u00e4rnfonden, tack vare g\u00e5vor fr\u00e5n privatpersoner, f\u00f6retag och testamenten, delat ut n\u00e4ra en miljard kronor till olika forskningsprojekt.<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.25.1″ _module_preset=”default” width_tablet=”80%” width_phone=”90%” width_last_edited=”on|phone” custom_margin=”0px||0px||true|false” custom_padding=”30px||10px||false|false” animation_style=”fade” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.25.1″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_image src=”https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-content\/uploads\/2024\/06\/mental-pedal-topp.jpg” title_text=”mental-pedal-topp” _builder_version=”4.25.1″ _module_preset=”default” border_radii=”on|16px|16px|16px|16px” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=”off|phone” _builder_version=”4.25.0″ _module_preset=”default” background_enable_color=”off” width_tablet=”80%” width_phone=”90%” width_last_edited=”on|phone” max_width=”640px” max_width_last_edited=”off|desktop” module_alignment=”center” custom_margin=”||||false|false” custom_padding=”0px|0px|0px|0px|false|true” custom_padding_tablet=”|60px||60px|true|true” custom_padding_phone=”|30px||30px|true|true” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text _builder_version=”4.25.1″ _module_preset=”default” text_text_color=”#969696″ text_font_size=”16px” text_line_height=”1.3em” custom_margin=”0px||27px||false|false” custom_padding=”0px||0px||true|false” global_colors_info=”{}” theme_builder_area=”post_content”]Efter att ha drabbats av utmattningssyndrom drog Fredrik Lundgren ig\u00e5ng insamlingsprojektet \u201cMental Pedal\u201d i b\u00f6rjan av 2021 och cyklade fr\u00e5n Smygehuk till Riksgr\u00e4nsen f\u00f6r att samla in pengar till Hj\u00e4rnfonden.[\/et_pb_text][et_pb_text _builder_version=”4.25.1″ _module_preset=”default” text_font=”Arial||||||||” text_text_color=”#141414″ text_font_size=”18px” text_line_height=”1.5em” header_font_size=”24px” header_2_font=”||||||||” header_2_text_color=”#222222″ custom_padding=”|20px|||false|false” custom_padding_tablet=”|0px|||false|false” custom_padding_phone=”” custom_padding_last_edited=”on|desktop” header_2_font_size_tablet=”” header_2_font_size_phone=”23px” header_2_font_size_last_edited=”on|phone” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

Assistent till mamma<\/h2>\n

S\u00e5 sm\u00e5ningom, n\u00e4r Susan blev allt s\u00e4mre, fick hon r\u00e4tt till full assistans. D\u00e5 anst\u00e4lldes \u00e4ven hennes d\u00f6ttrar som assistenter. Josefin beskriver de sista m\u00e5naderna som v\u00e4ldigt betydelsefulla, samtidigt som hon ibland brottades med dubbla k\u00e4nslor.<\/p>\n

\u2013 Stundtals k\u00e4ndes det jobbigt att missa sitt eget liv, samtidigt som jag inte visste hur mycket tid jag hade kvar tillsammans med mamma. Tiden fick stanna lite, och det var det v\u00e4rt: Vi hann prata om s\u00e5 mycket, jag fick svar p\u00e5 s\u00e5 m\u00e5nga fr\u00e5gor och d\u00e4rf\u00f6r finns det inte heller s\u00e4rskilt mycket som f\u00f6rblivit osagt.<\/p>\n

Fredrik beskriver p\u00e5frestningen att se en n\u00e4ra anh\u00f6rig f\u00f6rsvagas och f\u00f6rtvina:<\/p>\n

\u2013 Vissa dagar var otroligt tuffa, vi befann oss ju i d\u00f6dens v\u00e4ntrum. Ibland ville jag bara bort d\u00e4rifr\u00e5n, men n\u00e4r det v\u00e4l blev dags att g\u00e5 hem ville jag inte det heller. Men jag var ju tvungen, annars hade jag kraschat helt.<\/p>\n

I 22 m\u00e5nader levde de med sjukdomen, dygnet runt.<\/p>\n

\u2013 N\u00e4r jag tr\u00e4ffade Ida och Josefin var allt fokus var p\u00e5 Susan. Jag tappade bort att fr\u00e5ga hur tjejerna m\u00e5dde.<\/p>\n

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Tungt lass f\u00f6r anh\u00f6riga<\/h2>\n

Mitt i sorgen skulle Fredrik och hans d\u00f6ttrar dessutom ta hand om allt praktisk och administrativt, n\u00e5got de beskriver som en st\u00e4ndig kamp. Som till exempel n\u00e4r de ans\u00f6kte om en rullstolsramp, men kommunen inte ans\u00e5g att Susan var tillr\u00e4ckligt sjuk. Det blev dock en ramp till slut \u2013 goda v\u00e4nner byggde den.<\/p>\n

Eller n\u00e4r sjukhuset tog tre m\u00e5nader p\u00e5 sig f\u00f6r att skicka in ett intyg till F\u00f6rs\u00e4kringskassan s\u00e5 att Susan kunde f\u00e5 assistans. ALS \u00e4r en sjukdom d\u00e4r den drabbade ofta f\u00f6rs\u00e4mras v\u00e4ldigt fort och hj\u00e4lpen man ans\u00f6kt om kommer f\u00f6r sent.<\/p>\n

\u2013 Det k\u00e4ndes s\u00e5 fel att mamma hela tiden skulle beh\u00f6va bevisa hur sjuk hos var. ALS slutar ju bara p\u00e5 ett s\u00e4tt, med d\u00f6den, konstaterar Josefin.<\/p>\n

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Efterlyser b\u00e4ttre st\u00f6d<\/h2>\n

B\u00e5de hon och hennes pappa efterlyser kortare handl\u00e4ggningstider hos myndigheterna f\u00f6r ALS-patienter, liksom mer hj\u00e4lp fr\u00e5n v\u00e5rden:<\/p>\n

\u2013 Vi kunde f\u00e5 hem en andningsmaskin som vi sj\u00e4lva fick packa upp och sedan googla hur man anv\u00e4nder den, ber\u00e4ttar Fredrik.<\/p>\n

Det var f\u00f6rst mot slutet, n\u00e4r ASIH (avancerad sjukv\u00e5rd i hemmet) kopplades in som Fredrik och hans d\u00f6ttrar kunde b\u00f6rja k\u00e4nna sig trygga med att Susan fick r\u00e4tt v\u00e5rd.<\/p>\n

Josefin och Fredrik \u00f6nskar ocks\u00e5 att b\u00e5de Susan och de sj\u00e4lva hade blivit erbjudna n\u00e5gon form av st\u00f6d:<\/p>\n

\u2013 Jag fick kontakt med en kurator via ASIH, men det var f\u00f6rst n\u00e4r Susan g\u00e5tt bort, s\u00e4ger Fredrik.<\/p>\n

Josefin h\u00e5ller med:<\/p>\n

\u2013 Det enda st\u00f6det jag hade, det var mamma. Hon var s\u00e5 otroligt stark.<\/p>\n

EXTERN L\u00c4NK: St\u00f6d forskningen om ALS och andra av hj\u00e4rnans sjukdomar och diagnoser. Bli m\u00e5nadsgivare hos Hj\u00e4rnfonden.<\/strong><\/a><\/p>\n

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Mental Pedal<\/h3>\n

Efter att sj\u00e4lv ha drabbats av utmattningssyndrom drog M\u00f6lnbobon Fredrik Lundgren ig\u00e5ng insamlingsprojektet \u201dMental Pedal\u201d i b\u00f6rjan av 2021 och cyklade fr\u00e5n Smygehuk till Riksgr\u00e4nsen f\u00f6r att samla in pengar till Hj\u00e4rnfonden.<\/p>\n

N\u00e4r exhustrun Susan samma h\u00f6st fick sin ALS-diagnos best\u00e4mde han sig f\u00f6r att g\u00f6ra en ny resa, den h\u00e4r g\u00e5ngen f\u00f6r att samla in medel till ALS-forskningen. P\u00e5 internationella ALS-dagen, den 21 juni 2022, stod han p\u00e5 toppen av Kebnekaise, efter att han cyklat hela v\u00e4gen fr\u00e5n Kristianstad.<\/p>\n

I \u00e5r ska Fredrik p\u00e5 nytt ta sig upp p\u00e5 Kebnekaise, f\u00f6r att d\u00e4rifr\u00e5n cykla vidare till Norges h\u00f6gsta berg Galdh\u00f6piggen, f\u00f6r att slutligen n\u00e5 Danmarks h\u00f6gsta punkt, M\u00f6lleh\u00f6j. Den h\u00e4r g\u00e5ngen fokuserar han \u00e4nnu en g\u00e5ng p\u00e5 psykisk oh\u00e4lsa.
Hittills har Fredrik samlat in 750\u00a0000 kronor till Hj\u00e4rnfonden:<\/p>\n

\u2013 Mitt m\u00e5l \u00e4r att samla in en miljon, s\u00e4ger han.<\/p>\n

[\/et_pb_text][et_pb_text module_class=”fakta” _builder_version=”4.25.1″ _module_preset=”default” text_font=”Arial||||||||” text_text_color=”#141414″ text_font_size=”18px” text_line_height=”1.5em” header_font_size=”24px” header_2_font=”Siri Expressen||||||||” header_2_text_color=”#141414″ custom_margin=”27px||0px||false|false” custom_padding=”16px|16px|16px|16px|true|true” header_2_font_size_tablet=”” header_2_font_size_phone=”23px” header_2_font_size_last_edited=”on|phone” border_width_all=”1px” border_color_all=”#ebebeb” border_color_bottom=”rgba(0,0,0,0.15)” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

Vad \u00e4r ALS?<\/h3>\n

ALS (amyotrofisk lateralskleros) \u00e4r namnet p\u00e5 en grupp neurodegenerativa sjukdomar d\u00e4r nervceller i hj\u00e4rnan, hj\u00e4rnstammen och ryggm\u00e4rgen d\u00f6r. Det leder i sin tur till muskelf\u00f6rtvining och f\u00f6rlamning. Forskarna uppskattar att drygt 400 personer \u00e5rligen insjuknar i ALS i Sverige. Det \u00e4r dubbelt s\u00e5 vanligt hos m\u00e4n som hos kvinnor. De flesta som f\u00e5r ALS insjuknar mellan 50\u201370 \u00e5rs \u00e5lder. Man kan i dag inte bli frisk fr\u00e5n ALS, men det finns l\u00e4kemedel som bromsar sjukdomsf\u00f6rloppet n\u00e5got och som kan lindra vissa symtom. Forskning p\u00e5g\u00e5r, men \u00e4nnu \u00e5terst\u00e5r mycket f\u00f6r att l\u00f6sa g\u00e5tan med ALS.[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Fredriks ex-fru fick ALS: \u201dVi befann oss i d\u00f6dens v\u00e4ntrum\u201dN\u00e4r Susan fick diagnosen ALS var det en sj\u00e4lvklarhet f\u00f6r hennes ex-man Fredrik och deras d\u00f6ttrar att bli hennes personliga assistenter den sista tiden i livet. De \u00e5ngrar inte sitt val, men \u00f6nskar att st\u00f6det fr\u00e5n samh\u00e4llet hade varit b\u00e4ttre.Susan hade en l\u00e4ngre tid f\u00f6rst\u00e5tt att […]<\/p>\n","protected":false},"author":1,"featured_media":784,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-801","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-okategoriserade"],"_links":{"self":[{"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/posts\/801","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/comments?post=801"}],"version-history":[{"count":19,"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/posts\/801\/revisions"}],"predecessor-version":[{"id":842,"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/posts\/801\/revisions\/842"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/media\/784"}],"wp:attachment":[{"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/media?parent=801"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/categories?post=801"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kampanj.expressen.se\/hjarnfonden\/wp-json\/wp\/v2\/tags?post=801"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}