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CGARS

Distinguished member
Joined
Apr 24, 2012
Messages
311
Reason
PALS
Diagnosis
06/2011
Country
CA
State
Ontario
City
St. Catharines
We've recently had a benefit to raise funds for my future needs.
I have a loving family and great friends, but....

Assuming I would be in control of the funds, I'm having a hard time getting them.
Only reason I can think friends wouldn't want me to be in control is financial trust. This pisses me off, because the only financial issues I've had are due to lossing my job.

I have over 10 years experience as a financial adviser, so I'm obviously capable!


Then I find out my wife called the ALS clinic to tell them that I have been more tired since starting Riluzole/Rilutek, and lost some weight (5-8 lbs).
Guess what? I started a Neuro rehab session 2 days a week, 3 hours a day.
The exercise will do both (make you tired, and lose some weight)


Ya, I know they all love me, but I'm already losing control of the physical, and speech.

Let me control what I can, while a can.

Anyway, if you read my rant, thanks.

Casey
 
I know what you mean, most of us have been so independent, that to find every aspect of that being slowly taken away is so hard.

I wouldn't blame your wife for calling though, I would have done that myself... as a matter of fact, I've done that in the past about my hubby to get him an appt for counseling, which he refused to get. (Not that I'm saying that's an issue here BTW)... just that's what wives do when they're worried. The financial part... that would piss me off more.

Do you think the Neuro rehab sessions are helping you at all? I keep seeing different info on stuff like that.

Rant away, we all get it.
 
Hi Helen.

Yes, at this point I am positive the rehab is helping.

Range of motion exercises helping.
Physiotherapist stretching out the stiffness in the arms and shoulders a godsent.

I hate complaining, but you guys are the only ones that understand.

Cheers,
Casey
 
we all need to! Rant and rave, and then laugh and cry... we're all here for each other!
 
Rant away Casey. We know exactly where you're coming from. We're all losing our independence with each and every functional loss.

I think you're right on about the exercise inducing the fatigue and quite possibly the weight loss as well. I'm not sure I would stop the rilutek over it. You'll have to evaluate taking into consideration how and what you're eating. Perhaps you'll need to add some extra calories to compensate for the increased activity.

I'm curious about your Neuro rehab sessions. What does the program entail? I can't imagine a 3 hour workout. I did a brief stint at PT while in the diagnostic stage and 30 minutes left me exhausted. I was useless the rest of the day.
 
;-)Casey, about the financial issue with the friends, are they concerned that you might decide to head to the casinos with the funds?:wink:
 
My husband did physical and ot therapy 4x a week for 1 hour each session up until the day he died. It helped tremendously!
 
If it's a trust issue (which it sounds like you think it is) have them speak directly with your doctors and be reassured that your ability to manage your finances is not impaired. If they aren't convinced suggest the accounts of concern be jointly controlled. In other words two parties must authorize all transactions. That way both they and you have control and are protected. If the doctors can't assure them you are capable it's best you'll do control wise and long term best for everyone concerned. Yeah, it sucks.
 
Casey,

I'm with you all the way!

Let you do what you can while you can!
 
I feel for you Casey, why do they think our minds are going also?...I like to choose what I eat, drink, and spend my money on. If I want the doc to know something I will tell him. Seems they want the control, pray tell why? I am an adult for heavens sake so I can relate to your rant, I am still me, please let me make my own choices.
 
I think that a lot of people are still under the mis-guided impression that one with ALS is automatically somehow mentally involved as well. They perhaps see the body and think the brain must be affected as well. Perhaps that is the 'money' thing for them?

I could see it if you had FTD. Sit them down and explain that your brain works fine and that you are an adult, capable of making your own decisions.

Rant away!
 
I think that a lot of people are still under the mis-guided impression that one with ALS is automatically somehow mentally involved as well. I could see it if you had FTD. Sit them down and explain that your brain works fine and that you are an adult, capable of making your own decisions.

I agree but get the doctors to do it. People believe doctors. Oh and I would suggest not ranting away elsewhere, it makes you look like they might have a case.
 
I so agree with you Casey!
I hope you get it worked out but if you decide to head to the casinos...let me know i ll join you!lol
 
Thanks for the replies.
I think you may be running for office, Kiwi! You're so politically correct! lol

It's not really that I need control, it's just that I feel no one else has any claim to control it.

Funny comment on the casino Deb. I think that is exactly what they are thinking.
... and you know what? Not that I would, but if I wanted to, that's my damn business not theirs!

Anyway, MaryPat, Ohio isn't to far from Niagara Falls, drop me a line if you ever come this way, we'll met up at the casino!

Cheers,
Casey
 
I try Casey I really try but apparently I could piss off the Pope.
 
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