How can we greatly increase PALS lifespans today..

[lisag]

I have been around the board for many years now...my husband tried many alterrnative treatments..some he strongly feels helped..some he strongly feels did not including Rilutek the only available drug..but lets face it nothing out there is phenomonal yet..
With research crawling at a snails pace...literally in many cases rehashing things that were tried in the past with no efficacy at different dosages and combinations ...what is there we can do to keep PALS living more comfortably and longer...Could we literally" double "the lifespan of PALS...by halting secondary complications ..I for one believe so...
Ok before you say I'm nuts..think of the common things we lose PALS to..pnuemonia which if caught early is treatable, sepsis which can be prevented , depression not totally preventable but often can be alleviated..
The vent of course helps people survive longer..but even with a vent PALS can succumb to these complications..
Others here for personal reasons simply choose not to vent..
I respect any ones choices to quit aggressive medical intervention if it is their choice..
But how many would not agree to early detections of pnuemonias and a round of antibiotics or prevention of bedsores?..
I believe in research for future generations..and I personally have nothing against people trying alternative treatments..as long as they are aware of risks ...and underestand they are long shots..I know firsthand what it feels like to desparetly want to try something to stop this disease...
However, I believe in helping PALS survive longer now too with things that are currently available and can be proven to be of help....
Here are some essential things I feel all PALS should have access too...but unfortunately they are not available too many..and this neeeds to change...
1) A pulse oximeter..a substainal increase in heart rate often signifies illness or infections..a significant drop in 02 can signify a possible pnuemonia..
2) cough assist non- invasive..helps clear aspirated secretions..
3)Airmattress for "prevention " of bedsores and comfort which Medicare sadly covers only for treatment of bedsores
4)Speech equipment which is covered by Medicare at 80% and a $2,000 grant can be obtained by the MDA to cover the rest...the best tool for combatting depression of PALS...beats any drug to be able to communicate effectively..
Again I truly believe PALS lifespan could literally double overnight if these things were accessible to all...Our gov't spends billions on war supposibly protecting our citizens..how about spending a few million on helping those with illnesses survive longer...ALS may not be curable yet but PALS could survive twice as long if they all had access to what is available today.....Lisa

[boats]

Does your husband use all the things you list? How long since his dx?

[lisag]

HI Boats...He uses every single one of those things....he has had bulbar ALS for 7 years going on 8..he almost died literally stopped breathing and was comatose for 12 hrs with a bp of 50/35. two years ago and landed on a vent ...when I did not have a pulse oximeter and his 02 fell to 65 02...now I catch pnuemonias genarally at 94%02 or better as both the fall of 02 and the significant rise of heartrate signal to me that there may be an infection brewing ...
Of all of my regrets not getting an oximeter early is my main one...we lose PALS here all the time who catch a cold which suddenly turns in to a pnuemonia and we are left in shock and disbelief that they have passed...people in much better shape than him..
I want to see that stopped !!!
Gary has survived over a dozen pnuemonias..in any one case of pnuemonia if not treated and caught early enough he could have died..
How many PALS survive their first pnuemonia.? ..unfortunately not many..this needs to change.....it is not that I am a wonderful caregiver..it is that I have proper equipment to catch things early....all PALS should have access to it...Lisa

[Alison P]

I am in agreement with Lisa.....and Lisa you are an excellent caregiver. Having all that equipment is very necessary. My brother was trached and vented in May of 2004. One of the 1st things we requested was a pulsoximeter for when Chris came home from the hospital....and it has proven to be a God-send. With it, we can tell if he has a mucuos plug before he even knows it. I couldn't imagine us without it. We should have gotten one as soon as he was diagnosed. I think if we had had one sooner, his breathing problems would not have become an emergency situation as it did.

Alison

[lisag]

..Alison..
I am so glad Chris is hanging in there and I agree with you 100%...although honestly I do the best I can for my husband..there are far greater caregivers than I am..
My knowledge comes from the school of hard knocks..I knew nothing about medicine before this disease..nothing..I had friends that were nurses and docs..but I hated hospitals..and was quite ignorant medically speaking before Gary got ill.
The oximeter takes very little training to learn to interpret...but it is literally a lifesave for detecting infection ..even the best docs and nurses in the world could not assess a persons condition without them accurately..
With ian oximeter I may not be always be able to figure out what is wrong..but I know a sudden sharp decline...means to get a doc on the phone so they can figure it out...
When Gary's lung partially collapse I knew something was wrong but did not know what... but the oximeter told me something was up...although he felt no real discomfort until after I had him admitted to the hospital...seriously you don't know how many arguements I have with him...when the numbers change dramatically on the oximeter..he will swear he is fine..and I'll argue that I need to call a doc..sure enogh 9 times out of ten... two or three hours later it hits him..and he is glad the doc was already called..Lisa

[Alison P]

Hey Lisa,
I understand and agree. Before Chris got sick, I knew nothing about ALS. Life's circumstances has made me quite the expert. And you Lisa were so helpful to me when my brother was trached, vented and g-tubed. You instilled in me that we could handle this and we have and do. For that I thank you. Because of what I have learned, I can agree with you whole-heartedly of the importance of the oximeter.....and it is quite easy to figure out when there is a problem. It truly should be part of equipment list for PALS even prior to being vented.
Always good talking with you.
Love to you and Gary (and the kids too)
Alison

[lisag]

Alison..I am so glad Chris is hanging in there...
Yeah we all do get a crash course in medicine/nursing ... ALS kind of forces it..I still can't program my VCR... no joke..but that ventilator..I know like the backof my hand...
Inyimidating at first you bet..but not that big of a deal in reality...
Again I'm not hear to say everyone should vent..it's not the right choice for everyone..
But I am both disgusted at the medical community and deeply sadden..when I see someone pass away in ten times better shape than my husband because of a pnuemonia...
I mean if its a PALS choice..it is their choice..but the ones that get to me are the ones who fight so desperately..think they have a little cold..and are gone forever..that should be eradicated...
I swear Gary would have lived even longer without the vent if I would have caught his pnuemonia in time..Lisa

[John]

Hi Lisa,

You can't imagine how many people are happy to hear from you again and know that Gary is still with us. On a pneumonia-related topic, I have become a staunch advocate of vitamins. Before ALS, my only vitamins were what I consumed in food. For the past 5+ years I have taken high (1500 mg) doses of Vitamin C and 1600 IU of vitamin E daily. Prior to this I had 2-4 colds per year without fail. Since beginning the vitamin regimen I have not had one. I don't know if the other anti-oxidants I take also ward off colds but my point is, if you can prevent colds, you are warding of pneumonia as well.

John

[lisag]

John.. very good to hear from you as well.
.PALS stay healthy as possible..be vigilent about your health. I agree vitamins can help ward off colds ..and can too help reduce pnuemonias.
Aspiration onforal secretions and sinus drainage of those with allergies though can still put people with highly impaired swallowing at risk...so everyone please be on guard
Please you fight so darn hard..take good general care of yourself..monitor yourself aggressively..no more losing PALS prematurely to secondary illnesses.
Anddarn it I want better access to essential equipment for survival to "all" PALS ..not just my husband..I'm not joking overnight all lifespans could double..I'm nothing special..no super caregiver...I just have been fortunate enough to bve able to fight if it took it for what he needed...
And access to an oximeter, cough assist, airmatteress for early detection ,and speech computer for a will to live has been the key to his longevity..
I could not imagine life for 24 hrs without one of thiose thing..take away his speech for 24 hrs or his airmatteress he is in tears in hoyrs...femotional pain from not communicating, physical pain from lying on an uncomfortable surface, the oximeter has saved his life a dozen times..the cough assist has prevented several crisis from mucous plugs..
Guys whether you vent or not your choice..but I want to see all of you living as long as you want to live..and not succumbing to sepsis, pnuemonias and depression...,Lisa

[HarryAZ]

Lisa, it is good to see you posting again. I notice you are now using two periods (..), rather than three periods (...).

[lisag]

Harry wonderful to see you posting..absolutely wonderful..
My typing is still horrendous..my dots I don't know I guess it's just a subconscious thing or the new keyboard is different..at any rate..my typing speling etc is still a muck to wade through..but hopefully this new system will stay up..
I know you've been through everything under the sun and am so glad you are hanging in there..these days I try to look at things like this ALS probably won't be cured tomorrow..or for that matter this year..but what can we do to help people live longer with the resources we have now..
I also just try to spend alot more quality time with my family..My oldest daughter suffered more stress than I was aware of ...and last year I learned this the hard way... I really had to spend time trying to deal with fixing the problems of being a better Mom..and not just focus all of my time thinking of ALS..burning myself out I can deal with..damaging my children is another matter..so the way I look at it is Gary may have ALS..but he is not ALS...the world does have to revolve somewhat around the disease but not completely..
I truly have missed you guys alot ....and will try to stop in often..at the very least just to say Hi every now and again..Braintalk is full of many wonderful people..everyones experiences are unique...and there is a wealth of knowledge from all members posting here.I do hope all of you keep hanging in there ... stay on top of your health..and keep beating the odds...Lisa

[tom borchert]

Lisa and Harry,

It is so nice to see your names again. Still keeping up the fight here. The ALS takes over a little more each year.

Tom,:)

[lisag]

Good to hear from you as well my friend...keep up the fight and hang in there..Lisa

[wallyw1]

Hi, Lisa--thank you for all the good information. Wally's doctor has ordered a pulse/oximeter that clips on the ear. She had some reason for this which escapes me. I will post when I ask her again.

Wally's Mom

[lisag]

Good for Wally's doc..I truly am so happy to hear this... as unfortunately many physicians are hesitant to prescribe them to PALS ..
But truly I feel it was one of the most valuable tools a PALS/CALS can have..a true lifesaver..
I bet I know why the ear...as well.. if you are going to do long term monitoring there is less risk of breakdown to the skin..I have a finger probe but switch fingers every couple of hours...as Gary is in later stages it stays on him 24/7..
Most PALS with only beginning respiratory decline..would only nned to check it once or twice a day..unless they do come down with other symptoms of distress..Lisa

[MuonOne]

I didn't realize how long it was since I visited here. Last I remember, the url redirector was no longer bringing you to the site. Now it appears that the site has started over from scratch, what happened? Are the old posts available somewhere?

I noticed cure is now cure2007; this may be so apropo!

[guilty4]

Lisa,

Really good to see you even though this was in October of last year -
I try to still keep up. would you give an update when you can?

Harry - good to see you too.

Thanks,

kathy
Lost pals 05/04

[ainee]

G'day lisa,
Maybe a cure wont be found tomorrow, but I believe a simple treatment will help many people to have better health. I had undiagnosed MND/neurological symptoms, I experimented with a simple treatment which suppressed my symptoms.
After many months of experimentation, reseach, trial and error, my symptoms started to reverse.
I've posted my info on BT in the hope it will help others - in the Multiple Sclerosis thread - MOT - Mini Oxygen Treatment - by ainee - which is now a locked thread and is about 12 pages back in MS on the 4-26-2007.
Hope it helps someone else like it has me.
ainee.

[isic]

G'day lisa,
Maybe a cure wont be found tomorrow, but I believe a simple treatment will help many people to have better health. I had undiagnosed MND/neurological symptoms, I experimented with a simple treatment which suppressed my symptoms.
After many months of experimentation, reseach, trial and error, my symptoms started to reverse.
I've posted my info on BT in the hope it will help others - in the Multiple Sclerosis thread - MOT - Mini Oxygen Treatment - by ainee - which is now a locked thread and is about 12 pages back in MS on the 4-26-2007.
Hope it helps someone else like it has me.
ainee.

Dear ainee,
Could you tell us your tx concisely?

[kiwicalsNZ]

Hi Lisa and all other who have posted on this thread.
I am Roly Griffiths, in New Zealand. I have lost 2 wives to ALS /MND. #1, Alison, onset 1986, dx 1989, died March 1995. aged 60.
#2, Jill, onset 1978, dx 1981, we married 1997, she died February 2006, aged 55.
Between March '95 and December I was a Hospice Volunteer Caregiver, which I resumed in 2006.
In both roles I have been in contact with quite a number of ALS/MND patients.
Lisa, I wholeheartedly agree with you that dealing with the "minor" ailments is absolutely essential for the well being of sufferers. Being PALS does not insulate one from the infections that affect even "normal" people. Regrettably, I have found it very difficult to convince Doctors of this. So many just can not see past the ALS and believe that there is nothing to be done. However, I did manage to cure our local Drs of that attitude.
Neither Alison nor Jill had breathing assistance, nor G-Tube. Nor took any special supplements. Jill did have a pre-Pubic urinary catheter as the result of the difficult birth of her second child. Both were able to swallow the food that I prepared, almost to the end. Both died peacefully, in my arms, from heart arrest.
Jill used to be quite well known in the ALS chatroom of the old BT, using Words+ Ezkeys to type.
My Jill was a truly wonderful woman. Her story can be seen below.

http://www.alsindependence.com/Jill's_Story.htm

Regards
Roly: aka kiwicalsnz

[ainee]

G'day isic,
I've written so much on BT about MOT, but here it goes in a short version.

I experimented for months with Vitamin B1 - and many other things which gave the same result - in suppressing and eventually reversing most of my Neurological/MND symptoms. It wasn't an over night fix it all, but I'm now reasonably well most of the time.

I took - 250mgs - Vitamin B1 - 3 or 4 times a day.
OR
1000mgs/2000mgs VC 3 or 4 times a day. (I used the flavoured VC tablet and also VC in flavoured powder form).

When experimenting, I increased the dose quantity and dose rate, but believe anyone can gain better health on the above. Don't take VB1 if on pain relief.
I believe after all my experimenting - even though the other things worked as well - VB1 OR VC are the easiest to take.

Hope this is of interest to someone.
ainee.

[isic]

Thank you ainee, I appreciate your patience with me and your taking the time