Palliative Medicine/Care

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Tractor Boy

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Joined
Nov 1, 2014
Messages
165
Reason
PALS
Diagnosis
03/2012
Country
US
State
Michigan
City
Belleville
Hi all! Pretty quiet here lately...what's up with that?

I am soliciting comments and/or opinions from anyone who has experience with Palliative Medicine or Care. This is all new to me but find it intriguing. Please keep comments not-too-technical and not too long.

Thanks, TB
 
Palliative care treats people suffering from serious and chronic illnesses such as cancer, cardiac disease such as congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney failure, Alzheimer’s and Amyotrophic Lateral Sclerosis (ALS). Generally, Primary Lateral Sclerosis is not considered a life threatening disease unless in time the diagnosis morphs onto ALS which in itself is rare.

(More people die from COPD than the complications of PLS.)
 
Palliative care is concerned with making the patient comfortable, instead of trying to cure the disease.
 
Hey Mike, I agree. But... within the descriptive of PLS, being noted for slow progression, the need for Palliative Care would probably be several (many) years following diagnosis. In other words... someone diagnosed with Primary Lateral Sclerosis in 2012 needing Palliative Care in 2015 should surely seek a second opinion. PLS being rarer than ALS... rapid progression of PLS would be even rarer.
 
I agree. I think the main difference between pal care and regular treatment is that pal care removes the treatment oriented team and replaces it with a team of people more oriented and trained for patient comfort. When my PALS was diagnosed, shortly thereafter, the VA moved her care from her regular health clinic to a pal clinic. Which had fewer doctors and more nurses.
 
OK, so WHO makes the decision to put a person into Palliative Care, the doctor(s) or the patient?

Since they say there is no cure for PLS or ALS, I feel my Clinic visits are more geared toward treating my symptoms rather than curing me. So what's the big difference? TB
 
Depending on where you live and your doc/clinic, palliative care may be recommended as a bridge from "regular ALS care" [big air quotes here] to hospice. In many places, you'd go straight to hospice. Hospice has a specific Medicare meaning, that's all -- 6 months or less generally, though this is often shaded in ALS.

But you're right, the whole of ALS care is palliative though I believe passive ROM, massage, the right diet, supplements, etc. can prolong meaningful life. We did our own "hospice," so my definition of when care kind of switches into the final gear, whatever you call that, is when everyone stops measuring morphine, stops worrying about food and drink intake, and just hangs out. YMMV.

A doc might recommend, but P/CALS should decide, always, what is right for them. There are benefits and risks to any new organization or agency or clinician's becoming involved in your care. Shop around if need be. Ask "How will this benefit me?" Listen for specifics. It's like buying anything else, because assuredly, you have paid and do pay for it. I also stress that if you don't like it, send it back -- the stakes are too high. I hope you have a long life w/ PLS, but truly, the length of your death is on you.
 
OK, so WHO makes the decision to put a person into Palliative Care, the doctor(s) or the patient?

Since they say there is no cure for PLS or ALS, I feel my Clinic visits are more geared toward treating my symptoms rather than curing me. So what's the big difference? TB

Laurie is absolutely right, and I want to emphasize: The Patient always makes their health care decisions. The doctor should be your guide, not your boss. Of course, keep in mind that your doctor is a million times smarter about medicine than any of us.

Since there's no cure, everyone is always treating symptoms only, no matter what they call the care you're under.

In my PALS case, we progressed from "clinical care" to "palliative care" and then "hospice" and finally "hospice crisis care." The difference was the focus of the care team and the rules of the ER.

In clinical care, we saw all the highly trained specialists on the ALS team and they measured a lot of stuff. We had ALS experts available to us.

In paliative care, we stopped seeing the ALS people and saw a new set of nurses with one doctor. They didn't know squat about ALS, but were trained to focus on symptom relief.

In hospice at home, we were passed off to visiting nurses with an on-call doctor. No one knew anything about ALS, but they were used to dealing with end-stage people and kept my PALS comfortable. In hospice, we were not allowed to go the hospital or ER--we were to let any emergency take its course.

In hospice crisis care at home, we had 24/7 nurses in the home. No one knew anything about ALS or paralysis, but they were sitting in the kitchen in case I needed help. Again, we were not allowed any ER visits--we were to let any emergency take its course.

If you disagree with your doctor, you can always request a second opinion or you can even fire your doctor (assuming you can find another one).

Hope this helps. --Mike
 
Thank you all for your valuable input! Please know I was diagnosed with a MND in 2012, but they really never distinguished whether it was ALS or PLS (I assumed) because of limited LMN involvement from several EMGs. However, my neuro classified me as "UMN Dominant ALS" in order to qualify me for Clinic.

Does anyone know if PLS and UMN Dominant ALS is the same thing? I am not experiencing fasciculation or atrophy at this time. My voice is toast and am 100% PWC dependent now.

Also, at my last Clinic visit in Sept, I asked if I had ALS or PLS. The neuro told me it will take another 2.5 years of observation to determine that.

My very first neuro (in 2011) told me approx 95% of PLSers morph into ALS, which contradicts one of the above statements saying that was "rare."

Please advise, TB
 
TB, given that the median survival in PLS is ~20 years and the progression follows as slowly, and there is no LMN component in PLS at all, my guess, since you are in a wheelchair with no voice 4 yrs after presentation, would be that you have UMN-dominant ALS.

So what your 2011 neuro was saying, I think, is that most "PLS" is misdiagnosed and is really ALS. PLS is much rarer than ALS.
 
Lgelb, thanks for very informative response. Not quite what I wanted to hear, but (I hate this phrase) "It is what it is" I guess.
 
Laurie, please be aware my voice issues started back in 2007. Bulbar onset I guess they call it. I was slurring my words to the point people thought I was drinking or had a stroke. Soon after, within 2 years, my voice started getting raspy. In 2010 I started tripping over my own feet and falling a lot.

Does this timetable sway your opinion at all? Thanks, TB
 
Probably not. But I can't see you (e.g. is there any flaccidity in your muscles or only too much tone, are all your reflexes hyperactive or are some absent, etc.) or your EMGs, which should still show patterns very distinct from ALS (any abnormalities only in distal muscles, for instance). So I don't know if you've shown any LMN abnormalities, that would suggest ALS as opposed to PLS. If not, after 8 years from presentation as you've clarified, that would be suggestive of pure UMN disease, but the reason I say "probably not" is:

Complete loss of speech is rare in proven PLS, as is a bulbar presentation, and progression to a wheelchair is over a period of years going from feet to walker and chair. Moreover, the overall prevalence of PLS in the States is estimated only in the hundreds. So you'd be a rare bird indeed.

So while ALS still seems more probable to me (though again, not having the opportunity to see/not see LMN signs makes this opinion considerably less informed), you could still have a slowly-progressing variant. Even in ALS, reportedly 10% of PALS are alive at 10y out. You may be one of them.

--Laurie
 
Tractor Boy, do you have a past history of exposure to extremely toxic chemicals such as those like Carbon Tetrachloride? (Direct contact or fumes? Industrial, military or farming?)

(This is one of the best Threads I've read concerning PLS. Thank you Laurie and Mike.)
 
Tractor Boy,

Just as a point of interest.

My neuro has used the term UMN Dominant ALS and clearly stated to me, that it is distinct to PLS.
 
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