general update on how everyone is?

rocmg · 06-24-2009, 07:06 PM

hi everyone... i've been lurking and not posting for a bit. i wanted to use this thread to say hello again and see how everyone is. never a day goes by that i don't think of you all, PALS and families.

it's been four and a half months since my mum's diagnosis and 14 months since symptom onset. i've noticed her speech is a little less clear than it was 4 months ago, sounds a little lazier and words roll into each other a little more frequently. the weakness in her arms and her dexterity seems to have taken a bit of a hit -- she finds she has to kind of saw food with her knife, rather than cut it, and turning over in bed is a bit more labored. she's still walking, although she says her balance isn't the best and she doesn't feel comfortable running. no excessive drooling or eating problems. i don't know what all this means in terms of the rate of her progression. i hope it's slow. she still looks the same and hasn't lost weight. i wish her outward radiance could translate inwardly. she is still having a hard time coming to terms with her diagnosis. she cries a lot and there are days she just gets a faraway look in her eyes and there's nothing i can do to bring her back to me. it makes me very, very sad. i have to say, emotionally, we've all taken such a battering. my dad is also very sad and depressed. my brothers are fond of saying to mum, "you're fine. you'll be ok." sometimes that makes me angry and i feel like saying "she won't be OK and she's never going to be OK again!" but then i have to catch myself. maybe she will be OK? is it lying to say she will be OK? is it possible that she might be OK? i don't know. i oscillate between a light and a very dark place. assuming she has come to terms with her situation, when the time comes she will be vented. my dad and i have made the decision that we'll always stay with her. is that as good as telling her she'll be OK and that she's going to live? i don't know.

anyway, please let me know how you all are. i hope you've been having fun and enjoying the summer.

r. xo

strikeout · 06-24-2009, 09:52 PM

Hi, I was happy to see you back on here. I am sorry to hear your mum has progressed in some areas, but was very glad to hear that she is still walking and has no eating problems. This is a stinking disease where you have to be thankful for every little thing it has not taken from you. I think your brothers probably don't know what to say to your mum and they are trying to comfort her the best they know how. I'm sure your mum knows all the horrible details of this hideous disease. Telling your mum she'll be okay could be a way of reassuring her that you will all be there for her and will handle things that need to be done. Please try and hang in there and post here or PM me whenever you need to.
As far as the summer, I'm still waiting for the sun to make an appearance. Too much rain!

thelma313 · 06-24-2009, 10:25 PM

It's great to hear from you, rocmg. You and your sweet Mum are never very far from my thoughts. I relate to so much of what you wrote. I also feel like I oscillate from a light place to a very dark one. I am happy to hear that your Mum has no eating problems and is still walking and talking. I am also happy to hear her weight is up. Tell her to keep it that way!

It has been 10 months since my Dad's diagnosis and 18 months since his onset of symptoms. He is almost completely unable to speak now and only eating puddings and yogurt by mouth. He has had his Dynavox for about 3 weeks and he is doing pretty well with it and even having fun. He likes to type Italian swear words into it and when the Dynavox mispronounces them, hilarity ensues. I'm glad he hasn't lost his bratty boy sense of humour. Sadly he is barely able to walk now and renovations on my parents' home are about to begin.

I often marvel at how positive he is being and just how brave this man is! Of course he also has his days, just like your Mum, where he has that sad blank stare that's impossible to snap him out of but those days are quite few and far between. His hands seem pretty functional but there is obvious muscle loss there.

I gave him a card this father's day that expresses how proud I am of him and what a hero I think he is and it made him cry... a lot. I felt bad that he cried so much but my Mom says after I left he read it again a few times. Those were words that I need to tell him. I wanted him to know how unbelievably in awe I am of his courage.

I am enjoying the summer! It has been a gorgeous week, weather-wise over here and today was Quebec's national holiday. I had a picnic in the park, ice cream and friends over tonight. It was a perfect day! My parents are enjoying their garden. One of my Dad's friends helped to plant it this year so we are looking forward to his famous tomatoes in the next couple of months.

Keep in touch! Give my best to your family!

mndireland · 07-15-2009, 05:05 PM

Hiya Roisin, sorry Im not on very much. Having a small baby is a full time job!! My mam used to say she was preparing me for a baby while I was looking after her, but trust me, a baby is much more tiring!! Also I had more help in family and friends as they all loved my mam so much they were calling round a lot (thats her friends more than family ha) But Im over all that now!!!!

To me your mums progression seems quite slow which is good. She sounds like she can still do things for herself, that will keep her going on down days. Im glad she is still getting out and about, I hope you are doing lots of things she likes. I used to be like your brothers, I used to say you'll be ok and both of us knew what was coming but we could never really talk about it in detail. I dont regret that, its the way we were. she might like to have people she can talk to like you , and then people she can pretend its not happening like your brothers. I wouldnt worry too much about it.

Its been almost 4 months since my mam passed, cant believe how quick time has gone. Its her birthday on Friday, I go back to Dublin and we are having a little party for her, in my sisters house with all her friends and family. The headstone should be up, and we have done up keyrings and wallet cards with some beautiful words to give to everyone.
My sister went to see a medium, Im not sure how much others believe but it was quite sureal. First thing she said was your mum is stuffing her face with chocolate and laughing!! She loved chocolate and couldnt eat it in the end, she mentioned the baby and the fact im getting married, and it was just so nice to hear. She said a lot more, but one of the things was for us to put her drink on the table at her birthday party, and also that we were all to laugh and not cry, as she is no longer crying! Weither its true or not its comforting isnt it.

ill log on again soon to see how you are doing, take care