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AHands

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my fvc was measured at 67%
fvc was 100% in november
they tell me the copious amounts of pollen permeating the air here has no affect, but i still choose blame that insidious yellow dust
i have been noticing that i couldn't take a deep breath and relax lately--a deep breath came out like a sigh and my lungs just felt small
the respiratory lady showed my some exercises, including "stacking", that are supposed to re-open the closed up corners of the lungs...and...i think it worked! usually i'm a bit of a naysayer, but after doing those exercise "deep breaths" felt better.
i should have asked them to retest my fvc afterwards but didn't think of it.

i expressed interest in bipap and told him that i snore and wake up with a headache lately. he's setting me up with a sleep study, and i expect a bipap will be prescribed as i've never known anyone to go for a sleep study and NOT been prescribed breathing assistance and/or surgery.

i bet i can get my fvc back up to 100%! y'all stand back!
 

brooksea

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Adrian,

You might want to check with your ALSA to see if they've got a loaner BiPap til you can get one prescribed. My husband's FVC was at ~85% and we were told Medicare would not pay for a BiPap with it that high. So the clinic contacted ALSA for the loaner. We were told that if all PALS would go on BiPap from diagnosed, that it would keep them breathing "independently" for a longer period of time.

My husband seems to have more energy and doesn't sleep til 11:00 anymore. Have to think it's the BiPap and not the Lithium, since his last blood draw was Li undetectable. (upped his dosage yersterday)

Can you please describe or point me in the direction of "stacking?"
 

AHands

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i was just at the clinic yesterday, and talked to the mda and alsa reps. they only seemed to bring up bipap because i asked. i was concerned about cost. i read "$2000" somewhere--not cheap, but not bad for critical medical equipment. i think they told me that bipaps are generally rented, not bought? they also seemed to feel medicare as better than private insurance, but it seems like everybody else says, "no way!"

the sleep disorders center telephoned just now and set me up for mid-May.

i'm glad to hear about your husband's energy. sometimes i sleep late partly because i feel so useless with two bad hands, one bad leg and a weak neck. and when i sleep, at least i'm healthy in my dreams.

my lithium seems stuck at 0.2.

stacking, as i recall involved:
3 short inhales (don't exhale) filling up on the third
(belly should go out; shoulders should not go up)
hold for 7 seconds
purse your lips and exhale completely, but restricting flow in your mouth

it made me a little dizzy, but i felt like i could breathe more deeply afterwards.

i'll post the original instructions when i get home tonight.
 

brooksea

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Adrian re insurance,

Cheaper co-pays etc... Sure, if you are not critically ill maybe Medicare seems scary- but we've found it's better and cheaper. You just have to look very carefully at the the policies offered to see what fits you and it varies by state and county.
 

vmd

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Adrian:

Do you have a diagnosis, yet? You state you have 2 bad hands. Doesn't ALS usually target one side before the other?
 

AHands

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ellusive diagnosed

Adrian:

Do you have a diagnosis, yet? You state you have 2 bad hands. Doesn't ALS usually target one side before the other?

Diagnosis...not exactly.

one side before the other...mine did. the thenar (thumb) muscle of my left hand wasted away entirely in march '05. the rest of the hand and arm quickly followed. plenty fasciculations, spasticity etc. i could feel loss in my back and feet but my legs, but only the left hand looked space-alien-like and only the left arm looked like a starvation victim. five neurologists (two at als clinics), many emgs/ncvs, one ct scan, one lumbar puncture, two mris--tested negative on everything, but i was somewhat stable until summer '07, when my right hand started doing like the left had two years earlier, plus my neck got weak and my foot drops. i had stopped going to neuros, since all they could do was say "wait and see." but i've started back with a clinic again.

so, am i diagnosed'ed? the doc writes prescriptions with "335.20", which means als. he put me on rilutek last nov. he says MND, which in the uk means als, but he says he means it more generally. as time goes by, he just says that it looks more like als. i guess they'll be sure when they do the autopsy? it doesn't seem to be affecting treatment or anything, so i don't see a need to push for a diagnosed.

i went back to als clinic last week. they said my fvc was down to 67% (was 100% in nov), but i'm not so sure. it could be. i do feel like i can't take a good deep relaxing breath any more, but the nurse operating the machine was new and was clearly having problems with it--and it doesn't look terribly accurate to begin with. plus i get kinda coked up this time of year with the pollen.
 

vmd

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Adrian:

Any effect from the lithium yet? Like you did for a period of time, I have not been back to a neuro since last May. If it's ALS it will become self-apparent. I also wonder whether spending so much money on testing is what I really need right now, especially since I need to take care of my daughter financially.
 

AHands

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Adrian:
Any effect from the lithium yet?

How does one know?

I'm still at 0.2. Initially it seemed like cramping was less and fascics in my lips were last. now theres some cramps and maybe slight fasics in lips. no way to know how it would be without Li though.

Like you did for a period of time, I have not been back to a neuro since last May. If it's ALS it will become self-apparent. I also wonder whether spending so much money on testing is what I really need right now, especially since I need to take care of my daughter financially.

Yeah, I've got a teenage daughter in high school now too. Luckily my wife is quite capable of handling things on her own. When I first started going to the neuros, I was shocked that they'd essentially tell me that i've got three years to live & see ya in three or four months--what?!? thats a whole season! then my feelings shifted toward: whats the point in going to see them anyway? now, ok, i think the clinic will help me transition from work and insurance to medicare, but i don't know if i'm going there so they can help me, or so i can be case study or metric for them. these little gadgets that are supposed to help me zip my pants, or hold a spoon--i've got two bad arms, i can't carry all this stuff around with me.
 

vmd

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I'm sure all the PALS can empathize with the malfunctioning arms/hands. We use our arms and hands for so much, that it is not until we no longer have full use of them that we realize how necessary they are for daily living. On the other hand (no pun intended), I also read how the PALS continue to function well and with a very good quality of life. In the end, I trust in God.
 

vmd

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Adrian;

I had a couple of more questions if you don't mind. I'm assuming you have lost some function in your hands along with weakness. Is your writing being affected? Is the weakness profound so that you can't do things with your hands (opening jars, etc)? If so, how are you managing to perform these activities? I ask because I am experiencing a sensation of weakness on my right hand. Thanks.
 

AHands

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coping with hand loss

Adrian;

I had a couple of more questions if you don't mind. I'm assuming you have lost some function in your hands along with weakness.
definitely. thenar (thumb) muscle went first. now i know what its like to lack opposable thumbs.
Is your writing being affected?
definitely. i can still write, but difficult to be legible. thankfully, these days its all debit cards and computers anyway.
Is the weakness profound so that you can't do things with your hands (opening jars, etc)?
jars, zippers, buttons are impossible. round doorknobs, books, newspapers are challenging. i'll find a way to work a corkscrew though!
If so, how are you managing to perform these activities?
theres gadgets, and they work, but i can't carry all that stuff around with me, so i wear clothes without buttons or zippers and ask people to open jars. i use my mouth if no ones around--its humiliating, and not real appetizing, but...
I ask because I am experiencing a sensation of weakness on my right hand. Thanks.
it took a year or two to lose the left hand and i guess i've got a year or two left in the right (thenar is gone and finger extensors are weak).
 

CindyM

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If it's ALS it will become self-apparent.

Spoken with grace and serenity, VMD! It is amazing how our minds and bodies adapt, isn't it?
 

vmd

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Adrian:

Thanks. Yes, when all else fails, there is always the mouth!

Cindy:

Yes, although I wish I could be more serene sometimes!
 
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