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melalthia melalthia is offline

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Showing Visitor Messages 1 to 9 of 9
  1. Al
    12-21-2010 01:27 PM - permalink
    Al
    Happy Birthday Melanie.
  2. dldred
    12-21-2010 07:57 AM - permalink
    dldred
    Happy Birthday

    Dana
  3. CAHPAH
    07-27-2010 08:08 AM - permalink
    CAHPAH
    Mellorama
    Just wondering if you got your mom to go to her clinic in July. My wife also refuses a peg but the differance is that she is still not having any difficulty swallowing. Your mother is blessed to have you as a caregiver. Hang in there. May God bless you with the strength you need. Jim
  4. Dana Razo
    04-18-2010 11:24 PM - permalink
    Dana Razo
    Hi,
    Im sorry, I just found your message. If you ever want to stop by just let me know. My email is drhunstons@gmail.com. It would be nice to meet.
    Dana
  5. mellorama
    03-26-2010 11:20 PM - permalink
    mellorama
    Hi Mel, so sorry to be absent for so long.. I think I mentally needed a break from the constant internet research about ALS. All those coincidences with us are strange.... hmmm! Its also interesting to me that it seems there are a lot of women in our mother's age group being diagnosed with bulbar onset. I've read that bulbar is more common in women, but it seems odd and worthy of more study. Sounds like you have been learning a lot and I hope you all are making your way. My mom seems to have stabilized a bit- which is great. But she is on the bipap 24/7 so that has a tremendous effect on QOL.
  6. mellorama
    02-20-2010 12:02 AM - permalink
    mellorama
    Hi Mel,
    That's great that your mom is coming to live with you. Were you planning that before or is that because of her illness? I took a leave to be with my mom for awhile, but I've got to go back to my job. So we are trying to figure out next steps. I have a sister who lives close to her so that is great. She is not in hospice at the moment. It is a really tough disease - physically and mentally - so hope your mom can find some peace ( if she has ALS). Has she been tested for MG and Lyme's disease?
  7. mellorama
    02-14-2010 07:16 PM - permalink
    mellorama
    Ah, just read your posts and see you are going to UCSF. They are supposed to be great. My mom started with hoarse voice in 2008 -- many doctors and many symptoms later, including losing the ability to swallow and now talk -- she was diagnosed at UC Davis. But as with you, it is really now so much about the mother/daughter relationship that was/ wasn't in place before the ALS.... so I feel your dilemma. Let me know if you want to talk more..
  8. mellorama
    02-14-2010 07:10 PM - permalink
    mellorama
    Hi Mel,

    I am a Mel too ( Mellissa) and the daughter of a mom with ALS. My mom is in Grass Valley. Where are you going for your EMG/Neuro appt? Let me know if you have any questions. My Mom has bulbar onset and we have navigated a lot already. Good luck and your mom is lucky to have you in her court.
  9. sadiemae
    02-12-2010 02:27 PM - permalink
    sadiemae
    Hi Mel,, We live in your neck of the woods, Reno NV. Used to live in Placerville and Sac. Good luck to you, and let me know if I can help in any way. Lori

About Me

  • About melalthia
    City
    Boulder Creek
    State or Province
    California
    Country
    US
    How has ALS/MND impacted you?
    I am a relative of someone with ALS/MND
    When were you diagnosed?
    00/0000
    Biography
    I am an animator on feature films. Mother of 2 small ones. Soon to be caregiver to my mother.
    Occupation
    Character Animator in feature films.

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  • Last Activity: 09-21-2011 01:49 PM
  • Join Date: 02-10-2010

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View melalthia's BlogRecent Entries
Latest Blog Entry

Posted 09-08-2011 at 11:13 AM by melalthia Comments 6
Posted in Uncategorized
It's been so long since i updated this blog it feels a bit of a pointless sham but things have moved so suddenly I definitely need the comfort. My mom went from mostly independent two weeks ago... to bedridden and into Hospice. Her choice to not use a PEG finally caught up with her trying to manage it all by swallowing techniques and pureed food preparation. She was too picky with what foods she would blend up and wouldn't blend up so she really wasn't getting the nutrition she needed. Brian and...

Posted 06-18-2010 at 07:58 PM by melalthia Comments 2
Posted in Uncategorized
Two steps forward, two steps back..

So we've been researching her trip and it has been very exciting for her to plan and talk about going to France. It's all she does now. We spent the whole day last sunday budgeting and planning and trying to figure out how much we'll need to take out. (I'm dipping into my 401k to do this.)

But there's been a darkness with it all. Mom has gotten to the point where she can't eat anything that isn't the consistency of mush. And what...

Posted 06-04-2010 at 01:30 PM by melalthia Comments 1
Posted in Uncategorized
So last weekend was really good! I spent most of it with mom. After posting in the caregiver forum about her depression, i took her with me to a local fair for memorial day. It was really crowded with live music and pretty hot. She seemed to really like getting out and spending time with my son who is still isn't sure about her and is constantly telling her "noooo" when she looks at him. When we got back the house and after i put my son to bed for his nap, we were sitting outside enjoying...

Posted 05-28-2010 at 06:39 PM by melalthia Comments 1
Posted in Uncategorized
On the one hand, i'm really happy to have her close. Especially when things start to progress. But on the other, i'm acutely aware of how lonely she is. She says she likes being alone and enjoys her own company.. but its hard watching her have so little LIFE. My life is so frantic. Between the two jobs, the two kids, getting home late every night during the week and then having events to do during the weekend... i feel like I'm swirling around hers. When she comes home, she turns on the TV and...

Posted 05-13-2010 at 01:17 AM by melalthia Comments 0
Posted in Uncategorized
Mom had some issues with california state disability which forced her to go back to her neurologist so he can sign the paperwork. I've been wanting to hear how it went and to find out if he said anything else about her condition. I've fixed food for her a couple times now and she's not eating much. Unless it's soft. And her speech is pretty bad. So conversations about how things are going have been tough. She hasn't seemed to be in a mood to talk about it, so i've been trying to honor her wishes...
Recent Comments
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