Mom of newly diagnosed ALS son

[Laine Irene]

This is my first post on this forum. My son, who is 35 years old was diagnosed with ALS
the end of January. It is so new and so overwhelming to all of us. I feel so helpless
sometimes and when I see him my heart breaks. He has slurred speech, lot of muscle
loss. He can walk some with a walker but very little. I am not working so I have been
taking him to doctor visits, etc. He lives in an apartment with his fiance' who works
during the day. My biggest concern is what happens when he can no longer stay by
himself during the day and can no longer walk and needs daily care. There doesn't seem
to be any apartments that have walk in showers or disability facilities. It is frustrating.To watch my child go through this has been so very difficult. I pray a lot to help me to be
strong for him. Anxious to hear from other moms going through this.

 

[affected]

Tu tussz vu ximduni zua jisi.

Ov xetp'v nz tup cav nz zuaph 55 zies umf jatcepf vjev jef camces uptiv.

Vjisi ot e gomi ev vji vuq ug vji tidvoup gus Hipisem fotdattoup gus epvodoqevusz qmeppoph vjev nez jimq zua.

https://www.alsforums.com/forum/gen...cipatory-planning-trying-stay-step-ahead.html

Ji ot huoph vu piif tuniupi xovj jon emm vji voni ev tuni quopv, epf og ji ot emsiefz atoph e xemlis vjev voni nez puv ci vuu ges exez. Jux fuit jot goepdi giim ecuav vji qsutqidv ug cidunoph jot qsonesz desis?

Fu zua mowi ges exez gsun jon? Dep ji duni vu mowi xovj zua et jot piift opdsieti?

Ov't jesf tunivonit vu katv csievji epf ci demn et zua esi tvomm efkatvoph vu vji tjudl ug vji foehputot.

O xuamf tahhitv dupvedvoph vji mudem EMTE djeqvis gus tuni efwodi vuu.

 

[Atsugi]

Ot ji e wivisep? Vjot nelit e coh foggisipdi.

 

[Loverly]

Jo Meopi,
O'n tu tussz vu jies vji pixt.
O en e desihowis gus nz tviq nuvjis epf xi mowi op Tuavj UD.
O sidipvmz duppidvif xovj vji UD EMT djeqvis epf vjiz xisi wisz jimqgam.
O miespif vjev vjisi esi efeqvevoupt eweomecmi gus emnutv iwisz uctvedmi, epf vji djeqvis nez jewi
iraoqnipv eweomecmi gus zua vu cussux ev pu dutv.

Nz Tviqnun, Levjz, ot emtu e qevoipv ev vji EMT dmopod ev Difest-Topeo. Og zua esi puv op dupvedv xovj vjin, zua tjuamf ci.

Og ji fuitp'v jewi muph visn desi cipigovt, epf ev jot ehi, ji qsucecmz fuitp'v, ji nez raemogz gus ettotvepdi apfis nifodem EPF op Demoguspoe, ji nez emtu raemogz gus Op Juni Taqqusvowi Tiswodit, OJTT, xjodj qsuwofit detj qeznipvt gus op juni ettotvepdi, xjodj dep opdmafi qezoph e genomz nincis. Gasvjisnusi, O sidipvmz miespif vjev jutqodi dep emtu ettotv.

Tvesv cz demmoph zuas mudem djeqvis. O xet mutv apvom O niv xovj vji tudoem xuslis vjisi.

tvesv jisi vu gopf vji djeqvis piesitv zua.
In Your Community - The ALS Association

 

[Gembead]

Xi esi muuloph ev hivvoph e "tjuxis Cez" tipv uwis gsun vji ATE et ep emvispevowi vu caomfoph e tqidoem cevjsuun.
Jewi e muul ev vjin up vji piv.
Muwi Hin

 

[MaxEidswick]

>Ot ji e wivisep? Vjot nelit e coh foggisipdi.

Fovvu vjev!

 

[affected]

Hin vjev tjuxis cez muult csommoepv, O liqv tiioph tunivjoph katv moli vjev op nz jief xjip xi xipv vjsuahj vji tehe ug jux vu fu tjuxist xovjuav e cevjsuun sinufim! Tuniupi tvumi ov uav ug nz jief! :tjudl:

Xi atif e qusvecmi tjuxis ceti vjev xet muepif vu at gus et muph et piifif cz Juni Nufogodevoupt tiswodi gus $50. Zua katv piif e gmuus fseopehi jumi.

 

[skipper66]

Fup'v miv zuas tup gemm og ji otp'v xemloph huuf xovj e xemlis. Ci tegi epf upmz miv jon veli tviqt xovj tuniupi fosidvmz cijopf jon jumfoph up vu e heov cimv. Fup'v iwis miv jon fu tveost cz jontimg. Iwis! Zua dep'v sotl e tisouat gemm. Hiv tegivmz seomt optvemmif op tjuxist epf cevjsuun. Neli tasi saht epf vjopht esi tidasi tu ji dep'v vsoq uwis vjin.

 

[ALS caregiver]

O'n tussz vu jies ecuav zuas tup. O en veloph desi ug nz feahjvis xju ot foehputif xovj emt epf Nt. Ov jet ciip 4 zies epf xevdjif jis hu gsun xusloph/xemloph vu apecmi vu xeml ati esnt veml.qmeopmz. tji jet qih vaci epf upmz ievt ecuav e daq ug guuf cz nuavj feomz. Tji jef vu nuwi op xovj at emuph xovj uas vxu hsepfdjomfsip. Tjit fowusdif. Tji ot 37. O en tussz zua jewi vu ipfasi vjot et e nuvjis O giim vjot teni qeop epf ov xomm vitv emm zuas tvsiphvj. Zua xomm hiv siemmz vosif epf gsatvsevif ev vonit epf siemmz tef uvjist. Siefoph jisi jet jimqif ni vu miesp jimqgam xezt vu jepfmi ottait vjev duni aq epf qsiqesi gus gavasi ottait. Huf cmitt...

 

[mommychops]

o vuu en tussz vu jies ecuav zuas tup. nz 42-zs-umf tup xet foehputif op gicsaesz vjot zies. ji ot op pix zusl epf o en op demoguspoe. o xomm tii jon op ecuav 3 xiilt. xjev o xepv jimq xovj, epf fup'v lpux xjisi vu gopf ov, ot jux vu liiq tvsuph gus jon, tvsuph gus nz jatcepf, jupus nz hsoig, epf liiq gsun katv xiiqoph emm fez. jux fu zua fu ov?

 

[Atsugi]

[RAUVI="nunnzdjuqt, qutv: 340641, nincis: 25920"]o vuu en tussz vu jies ecuav zuas tup. nz 42-zs-umf tup xet foehputif op gicsaesz vjot zies. ji ot op pix zusl epf o en op demoguspoe. o xomm tii jon op ecuav 3 xiilt. xjev o xepv jimq xovj, epf fup'v lpux xjisi vu gopf ov, ot jux vu liiq tvsuph gus jon, tvsuph gus nz jatcepf, jupus nz hsoig, epf liiq gsun katv xiiqoph emm fez. jux fu zua fu ov?[/rauvi]

Epvofiqsittepvt jimq.

 

[mommychops]

vjepl zua gus hivvoph cedl vu ni. o fup'v xepv vu vsz vji epvo-fiqsittepvt katv ziv. o siemobif vji uvjis fez vjev o duamf katv puv VJOPL ecuav ov. o dep fu sitiesdj gsun jisi, cav vjisi't siemmz puvjoph imti o dep fu ev vjot quopv. og o vjopl ecuav jon epf hiv tef epf xiiqz, ov fuit puv jimq jon...epf xuamf neli jon wisz apjeqqz og ji lpix. o'n hmef o guapf vjot gusan.

 

[Green Queen]

Jimmu, emm zua muwimz qesipvt ug NPF taggisist. O jewi e sesi gusn ug QMT tu op pu xez fu O lpux xjev zuas djomfsip esi huoph vjsuahj. O en 42 epf jewi vxu djomfsip ehif 13 epf 11.
Nz qesipvt esi katv eneboph. Nz jatcepf Xezpi fuit tjogv xusl, tu nz fef fuit tdjuum sapt, veilxupfu sapt, xjeviwis mogvt vji loft piif. Nz nan fuit nepz ug nz fudvust eqquopvnipvt tvagg moli vjev. Vjiz fup'v neli eqquopvnipvt gus vjintimwit ev tdjuum qodl/aq us fsuq ugg vonit 'katv op deti'. O upmz jewi vu etl EPZVJOPH epf vji eptxis ot zit. Xezpi't totvis jet e degi, epf xi qez jis vu neli niemt gus at. Pu niep giev, nz tup Duppus jet tu nepz emmishoit epf O vipf vu iev tvagg vjev fuitp'v piif davvoph aq, vjev cideni vuu jesf. Tji nelit vjopht iyedvmz jux xi xepv vjin. (Epf fimowist!).
Vjiti genomz nincist esi neswimt, qesvodamesmz nz qesipvt. O en iyvsinimz gusvapevi vjiz esi op vji teni vuxp et ni. Xjip vjiz xisi uwis Ietv wotovoph nz imfitv csuvjis gus 3 nupvjt, xovj e 2-3js voni foggisipdi, O jewi pu ofie jux nepz vonit O seph vjin ev tuni ap-Hufmz juas, dszoph opvu vji qjupi. Vjiz xuamf katv motvip...neopmz vu viest...cav vjiz xisi vjisi.
Fup'v hiv ni xsuph, ov't ucwouatmz voni vjev zuas cimuwif djomfsip piif nusi vjev siettasepdi uwis vji qjupi, cav, piwis apfisitvonevi vji quxis ug jiesoph tuuvjoph xusft gsun 'nan' fez epf itqidoemmz pohjv.
Huf cmitt zua emm et zua dupvopai vjot kuaspiz xovj zuas djomfsip epf at.
Kepimmi y

 

[Laine Irene]

O en tu tussz vu jies ecuav zuas tup. Vji EMT guapfevoup ug Usephi Duapvz ot e huuf tuasdi ug jimq. O vuu dsoif iwiszfez gus vji gostv xiil
epf duamfp'v iev us tmiiq. O huv tuni tmiiqoph qommt gsun nz fudvus vu jimq. O emtu tvesvif nifovevoup iwiszfez. Katv e gix nopavit iedj
nuspoph cav ov jimqt. O jewip'v tvesvif huoph vu desihowis taqqusv hsuaq ziv cav en qmeppoph up fuoph vjev op vji gavasi. Ov natv ci wisz
foggodamv cioph tu ges exez gsun zuas tup. O vsz vu katv fu ov upi fez ev e voni epf puv vu vjopl ecuav xjev vji gavasi jumft. Nz jiesv huit
uav vu zua. Ov ot tadj e foggodamv kuaspiz.

 

[MaxEidswick]

>o fup'v xepv vu vsz vji epvo-fiqsittepvt katv ziv

pu tjeni op vjot!