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  • May 18, 2015 at 8:28 am

    Im so sorry about your mother.

    i understand and feel your struggle, the only way i personally manage to take care of my own father is by sacrificing many things that came my way. luckily i have 3 siblings, they are all married but work around my dad’s comfort, they have families and children, my two brothers come in the morning to help me wash him and my sister takes over on weekends, i’m homebound i allow myself a break once a week but my dad requires 24/7 care so leaving his side is not an option for me. with you it can be exactly the same, i suggest you do as they wish, let them live together and make arrangements with you sister where you swap shifts arounds, you do mondays she does tuesdays and so on. but before you do any of that you need to accept it all, i’ve learnt the hard way that pretending like its not happening is not going to help stay strong, i had to absorb it all in and accept that my dad is bed bound and accept the fact that he needs support even in the tiniest details,only when i accepted things i managed to fit my life around his.

    don’t give up hope, once you do you end up like i sometimes do, curled up on the floor crying my heart out. it is so hard! hope is all we have, even if it ends the way it is we need to stay hopeful, think about doing part time work so you can look after your mum properly, you can’t forget yourself too.

    as for the pump in the foot, when my dad did his plasma exchange his toes started to wiggle and he is picking up light strength everyday, I’m not sure that cider affects the speech, i don’t actually think it does, you might want to look at a different diagnosis?

    we only have each other, yes our loved ones are affected by cidp but we suffer as well, i’m here for you to pick you up if you need anything, this is our 4th year with dad so I’m kind of getting used to it..where do you live if you don’t mind me asking? i only ask because in the uk we have a government scheme that helps people caring for sick parents or members of family

    let me know and i’ll explain it all to you

    May 12, 2015 at 12:34 pm

    hello tperri

    you have no idea how hopeful this makes me, our neurologist did mention a rituxumab but said he didn’t want to give it to dad straight away given that he has already taken cyclophosphamide (another form of chemotherapy)

    if you don’t mind i have a few questions,

    was your partner bed ridden? if so how long was he bed ridden before he started taking rituxan and how bad was the damage… i only ask because if he was actually ask bad as my father is then we maybe very close to reaching the end of the tunnel

    March 19, 2015 at 8:00 am

    after my dad finished his plasma exchange, he immediately felt better, clean inside, energetic but lacked the power to be able to stand and use his arms. its been two years since he last had plasma exchange, and i will be meeting with his doctor next month to discuss a new treatment option of plasma exchange followed by IVIG and drugs. I’m hoping to see any changes this time. I’m quite desperate, my dad was so fit and energetic extremely healthy and powerful and now he is helpless. it breaks my heart when he talks about his childhood and it hurts more when i hear him speaking about him future plans of travelling and living life correctly if he gets another chance to.

    im so sorry to know of that mcp… i can really relate, i know its my dad who has the condition but somehow we feel the pain too. from experience and after battling the case with so many doctors i suggest that you see your doctor straight away, tell him that you want plasma exchange instead of IVIG, plasma exchange is much more effective and will stop it just in time. I came across this process two years ago and i when i spoke to the 3rd doctor about it he put us off it saying that ‘its a messy procedure’ and it absolutely isn’t. please consider plasma exchange, I’m only saying this because we are sure of the results, they haven’t really helped dad because its too late but I’m pretty sure they’ll help you.

    my dad is wondering what sort of pain do you feel?

    don’t let it get it to you too much, i know its easier said than done, sometimes it hits me in the face and i say to myself ‘oh my god, my dad is actually bed bound!’ but I’m numb inside and out now. that is the only way i get to deal with it, but it will get better i promise, just stay hopeful and positive and always look out for the positives in the negatives, and have faith! faith is not knowing that god can but that god will.

    keep me updated and let me know how it goes. as for my dad I’m going to meet with his doctor and workout a new plan of treatment, I’m not giving up just yet!

    stay hopeful, stay positive! 🙂