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rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
A year or so prior to my diagnosed - I had this insurance consultant friend calling me daily urging me to consider critical illness insurance - I just kept ignoring his calls...I'm only 37 and healthy as a horse - don't bother me with this garbage...

In January '05 I received an application to significantly increase my long term disability insurance at work - I filled out the form but never got around to sending it in - I remember running across it from time to time on my desk and I kept telling myself there's no rush - came across it again just around the time in May when I started seeing my familiy doctor about the weakness in my hand. No issue if I had mailed it in in January - but in now I can longer qualify.

Just bought a house in early May - the bank offered LTD insurance - I declined of course...- why would I need that?

Hindsight is 20/20 - and I can't really fault myself for declining the critical illness insurance or LTD on my mortgage - these were rational decisions based on the information I had at the time - but I keep kicking myself for not sending in the increase form for my LTD at work...

...but the worst is...and those of you who live in Toronto and listen to 680 CFTR will understand...is to have to listen to the obnoxious "critical illness insurance" radio ad that plays incessantly... "Imagine being told you have cancer? How are you going to pay your bills, your mortgage, your nanny fees...Too often I get calls from people diagnosed with a critical illness and for them it's too late to qualify - so act fast and call now - Rates are going up and the return on premium is going away"

Arghhhh! :x

I guess the only thing to do is to beat this monster called ALS! Die you monster! Die! Die! :D :D
 

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
I know where your coming from, I'm self employed, no disability Insurance and no income once I can't work.Four young kids and a wife and I've always been the sole provider working 14 hour days, now I get to drag them down mentally and financially, what a bullcrap disease this is.
 

rcharlton

Moderator emeritus
Joined
Jun 20, 2005
Messages
610
Reason
PALS
Diagnosis
11/2005
Country
CA
State
Ontario
City
Toronto
Hi Twospeed,

My plan is to hang on long enough and hope that some medical treatment becomes available. Most neurologists I have spoken to seem confident that there is promising treatment on the horizon - even though they did not give me any details...but hopefully before the next ten years runs out...

Based from your other posts - I think our cases are somewhat similar. I'm 38 and first started noticing weakness in my right hand.

I have noticeable muscle wasting in my right hand. I also have some weakness in my right arm and left hand as well - along with tongue fasciculations, increased saliva production, some trouble swallowing and occassional choking. Legs seem to be unaffected so far - although I have noticed twitching there very rarely...which concerns me...

I think you mentioned that your conditions improved and once asked if I had any improvements. Unfortunately not. I think things have been pretty stable for a few months - but I can't be sure. I know that trying to pinch open a stiff clothespin with my right hand is pretty tough to impossible...

How have things been with you lately?

Dr. Michael Strong did tell me that young men with limb onset ALS typically have the "best prognosis" - with survival 10, 15, 20 and 25 years in some cases...so I'm hopeful that there will be some treatment within that time....
 

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
I'm going to the ALS Clinic in Vancouver on tuesday to get looked at by
a ALS specialist which will hopefully answer some questions.I know something is not right but some doubts linger with me as whether it is ALS or another MND.I still work though I've slowed down a bit, more because of my mind than my body, work seems to lose it's importance after being told you have ALS.My neuro here seems very scattered and sloppy and rather rushed to call it ALS, he is the only person to call my brothers ALS even though he's doing quite well after over 20 yrs with it.I still have decent hand strength can do 40 reps on those hand grip exercisers but I can feel something is not right.My left thumb muscle is the worst as I can make it spasm at will now just by tensing it and it hurts like a charlie horse, I also get the carpal tunnel sensation at night sometimes, but my EMG on my right thumb showed signs pointing to MND involvement.I had bad twitching that came on right after being told it was possible ALS but in the following two months I've been able to get control of my emotions and anxiety and they have pretty much sudsided so I think alot of it was anxiety.How has your body weight been, steady or have you lost weight, where on your thumb are you losing muscle the big pad or on the back side, any sensory symptoms like pain, numbness ect..My brothers hands are described as simian in appearance in the doctors report as he has lost most muscle in hands and forearms but his lower body has not beeen touched.
 

leslhart

Member
Joined
Jul 28, 2005
Messages
21
Hi guys
In reading your posts, I share a lot of your symptoms only I'm a little further along. I was diagnosed 5 years ago. I am 39 now. It started with my right thumb. I live in the Vancouver area. Most of my visits now are with G.F. Strong rehab center (wonderful place). If I can provide any advice or help in any way, feel free to ask. I read this forum every day and it has certainly helped me a lot.
Les
 

twospeed99

Active member
Joined
Jul 23, 2005
Messages
33
Hi Les
That's where I'm off to on tuesday GF Strong to see Dr Briemberg, ever deal with her.My brother has been dealing with his for 23 years, came on in his early teens as weak grip and he's now 40, he has muscle wasting of hands and forearms but no problems below the waist.His initial diagnosis was a lower motor neuron degeneration but last year the neurologist up here called it a mildly progressive indolent variant of ALS.My brother said that his GP disagrees with this diagnosed and no one has ever sent him to the ALS clinic so I get to be the guinea pig I guess.I've read of MND's that only effect the hands and forearms resulting in atrophy but not effecting lifespan so I'm hoping.My weakness is better in the mornings but as I work throughout the day gets worse (I'm 42), I also have sensory symptoms, pain and charlie horses in thumb muscle.The neuro up here said he did not think it would kill me but would slowly cripple my hands over time so I'm hoping he's right.I've had one emg on my right thumb showing abnormalities and he see's some very minor wasting and that is what he has used to diagnosed me so I'm hoping for something a little more thorough on tuesday.Wish you the best.
 
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