CALS Roll call

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affected

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Joined
Apr 26, 2013
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16,096
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Lost a loved one
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05/2013
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OZ
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AU
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lala land
The CALS are so quiet the past few days I can't help but worry are things ok.

So, I thought I'd start a roll call, put your hand up and let us know you are here so we can support each other xx
 
You are always thinking of others Tillie, love you .
I have had a busy time since coming home from the cruise, have been attending a carers course up in Perth, and now have two Grandies with us for school holidays and I am having to share my iPad.
My lovely man is finding it harder to walk and is just starting to have issues with his hands, so things are progressing.
Trying to read all the posts but havnt found time to respond,
Love and hugs to you all
Gem
 
Gem is right, Tillie, you are incredible. I'm around, I'm just having a bit of a tough time. My life is full of blessings but I feel like I'm on the edge of a precipice and just don't know when a good strong breeze will send me over. I've always been a communicator, but strangely I find that this situation sometimes makes just makes me clam up. I check in now and then, but find myself just unable to chime in. Maybe it's time to step back and find a deeper sand pit in which to stick my head :)

The most wonderful thing I've read in a long time is the Tilllie's Trees thread. What a gift. Thank you for being you.
 
Nuts and Gem, please don't stop posting. This is probably selfish on my part, but your post has helped me a lot to hear your advise and sound counsel. I am sure others feel the same.
 
Where is Max? Not seeing him post makes me worried. I hope he is ok
 
OK Sister I'm going to do a roll call thread for the PALS so it doesn't get too confused.

Nuts, I wondered why you were so quiet after that time to see your mum. Sometimes a good ramble can help, sometimes not. CALS have a tough journey in such a different way.
Please remember you can pm me if you can't rant publicly.

I learned so much from many that are no longer here my sister/brother CALS, and I'm trying to keep that alive. I am so glad it helps, I still remember vividly how I was as a CALS, like it was yesterday, some days I wake and it's odd to realise I'm not doing that anymore.

Gem, {{{grandies}}} lovely, enjoy. Great distraction of the real world as you know your husband is declining.

Pete, I love the fact that PALS and CALS are together on this forum. Places I go or have been a member where they are separate are important for many things. But the support here is unique, and we all need each other indeed.

OK that's a few, lots more CALS need to put their hands up, even if it's to say you are having a hard time and can't say much.
 
Hey Tillie I also was thinking how quiet it was here. not that I have much to say these days! my hubby is doing good again, no coughing fits in a week! We had a big Easter party with about 30 family members at our house! I bought BBQ and beer and everything else was pot luck so it wasn't much work. He enjoyed seeing all his cousins and even though he was tired when they left he had a good time.

Sleep has been elusive for me these last few weeks. haven't had any luck hiring a night time caregiver :( . I have decided I really really need some respite time soon. not sure how I will make it work.
 
So glad the easter bbq went well, I think that was about to happen last time we spoke.

Sleep ... CALS ... sleep - oxymoron I'm sure those 2 words can't be used in the same sentence without a negative context ;)

You do need respite Barbie. We all know we do as CALS but the reality of making it happen seems to be a totally different creature.
 
As my husbands PLS progresses, I find I want to be more a part of this forum. So I am answering the roll call....Here. I have learned a lot and have been ahead of M's progression thanks to the advice garnered from these forums At this point, M is walker dependent with an occasional fall that makes me want him to adjust to life in a wheel chair. He has good upper body strength but his legs are very stiff. He has difficulty turning over and daily living tasks take him forever. His speech is approaching non intelligible, he is having swallowing issues, and chokes frequently, and is starting to have issues with his upper extremities. His respiratory status remains good despite all the choking etc. He was diagnosed with MND 11 years ago.
All I know sound familiar. I watch him struggle for all that he does. He has been remarkable reinventing himself with each loss. We have been able to travel (we have spent all told 8 weeks in western australia) and our recently purchased Zinger makes outings much better. He has started writing which is his new passion! I struggle not to hover and do everything for him. He is stubborn (aren't we all) and I have to let him make his decisions. Last year he broke his hip which was his wake up call.
We live in RI on a tidal river. Because of his slow progression we have renovated with his handicap in mind. Alas he is not a veteran, so not eligible for those benefits.
we have a west highland terrier who is the highlight of the house. That is a bit about us.....
 
avnl - indeed with the progression you are at now you need support, and here we are in it together!
Thanks for updating us but I'm sorry to hear the progression you are both living with. Inevitable and yet every loss is a new grief and shock no matter what we know in our heads.

Do keep posting PLS SUCKS as does ALS.

Look forward to getting to know you as you start contributing here more!
 
Thanks Tillie
Anna
 
Hi Tillie, We have been around a and blessed with a lot of company.....while Iam trying to work full time. We had 14 extra people at dinner last night. Tomorrow we go to Sarasota,Fl. We are participating in the ALS walk. My son Julien has raised over $1900 .


Also trying to work thru the VA paperwork.system to get the HISA grant, adaptive housing, and van paperwork complete. Our a/c had to be replaced, etc. Its been a real.whirlwind. I try to check things out daily but often don't say much.
 
Wow gooseberry I hope you didn't have to cook for them all!

Have a great time away at the walk, thanks for putting your hand up :)
 
Hi everybody! I find that the only time I can sit at the computer is after putting Tim to bed and by then I am bushed. We continue to work on the landscaping, which we have made like our own little resort. Tim loves to watch the fellow that is building the rock retaining walls, who is absolutely a master. He is the same age as my oldest son, and seems to dance with his machine. People have been coming regularly to see the progress. It has been the best spring I can ever remember! I asked God for an early spring so that we could get started on finishing the yard, so that Tim can get as much enjoyment as he can. He blessed us beyond belief. I will try to get some pictures tomorrow.

Paulette
 
Thank you for asking Tillie! You are a true blessing to the forum. I read the forum about every day but do not post too much. My PALS has been a slow progression for a few years. He's had some changes that are unwelcome in the last two months. He's having some issues with choking on liquids and a weakened voice a few times a week. His overall strength has declined.

We are right smack in the middle of adapting the house using the VA specially adapted housing grant. From paperwork to breaking ground it has taken two years to make this happen. Finally a ramp will be on the house by the end of the day. I've had to make quite a commotion for the work on the addition to stop so that a ramp could be put in. I may not post too often here but I read a lot and I've imbued myself with the notion that preventing falls is key to living longer. We seriously need for the wheelchair to come out of the van and into the house before he falls when he is on his feet getting from there to here.

We've also instituted a nap for him in the afternoons using the Astral. It's done wonders for his energy level in the second half of the day.

Peace to all!

Mary
 
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