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tripete

Very helpful member
Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
This past week I had another clinic visit. One of the the things that has struck me as I have been thinking about what was said to me was how many times the phrase "Quality Of Life" was brought up.

I refuse to take medicine for the pain and cramps as I do not react well and they make me foggy, the Dr insisted though that it would improve my "Quality Of Life".

We discussed the need for a permanent wheelchair and they are insisting (with Medicare) that I get a standard huge monster (instead of a lighter collapsible model) that will not work in my house and that I cant transport but that some how will ... you guessed it ... improve my "Quality Of Life"

You need to use your BiPap/Trilogy a lot more during the day as it will ... here it is again ... improve your "Quality Of Life". Never mind that I cannot speak to my wife with it on and it annoys the he11 out of me.

Then theirs always the depression discussion. They tell me I need to be going to support groups and taking meds all to .... wait for it .... improve my "Quality Of Life". For me spending the time they way I want to spend it with my own mind (not a pharmaceutically created one) is the right way.

Doing all or some of these things for people who feel that they will get benefit from them is fine, even good. But to throw all of us into the same "bucket" (pun intended, get it "ice bucket") is just more medical school trained nonsense. We are not the same and all the "experience", "psychology", and "good intentions" do not mean anything if the individual is not being listened to.

In regards to progression how many time do we hear that everyone is different? And yet in regards to treatment we are all thrown into the same "bucket" and not treated as different individuals at all.

The bottom line is that we take the knowledge that we gather and determine what will make for a better "Quality Of Life" for us the individuals. We do what is best for ourselves and our loved ones to make the remainder of these miserable days as good as possible.
 
tripete, medical staff want to offer something that makes a hopeless situation better, so they sometimes offer suggestions just to be doing something. I hear it at our clinic visits. I am a nurse and now realize I have done the same thing to patients. I think I have become a much better listener and empathizer in past few years.
I totally agree with you that each of us has a different idea of how a "better quality of life" would look.
 
Pete you get to choose! If you want an intervention do...otherwise dont.
 
Pete, we had the same experience with the wheelchair. We were strongly advised to get the big power chair because this was what all the other ALS patients got and it would be the best for my husband's quality of life. Frank has no use of his arms so they had him test a power chair using his feet. He had a very difficult time (maybe because of his big size 14 feet!) so we said no, we would prefer a manual chair. They said you only get one chair from Medicare so you better make it a power chair. They insisted that Frank try using a power chair that he could control with his chin. He tried this with a little bit better results than his feet, but not much. I asked what would happen when he lost control of his neck (which is starting to happen) and they just shrugged their shoulders. I have no way to transport a power chair but they didn't seem to listen to this. Once again we insisted we wanted a manual chair even though we were told by the physical medicine doctor that we were making a mistake. We got the manual chair which is easy for me to maneuver and comfortable for my husband. It can also recline. Unfortunately, it is too heavy and not collapsible so we can't travel with it but we knew that beforehand and Frank seldom leaves the house.

I think you need to tell these health professionals that you have given a great deal of thought about whatever thing they are trying to push on you and that this is what YOU have decided you want. I really think that most of these people think that they are doing what is best for you but ultimately it is your decision.
 
On the opposite end of the spectrum, we met with a local gastroenterologist to discuss the possibility of a feeding tube. My PALS is not sure if he wants one, but the discussion of quality of life has come up because eating is becoming a choke fest. He has become afraid to eat, so as a consequence has no energy to do some of the things he enjoys.

We met with a local doc at the recommendation of a our PCP because those associated with the ALS clinic are quite a distance from us. The gastro didn't think it was a good idea because it wouldn't prolong my PALS life. When I brought up quality of life and the significant choking issues, his response was "You are clearly over-dramatizing it." Needless to say we will travel to find a gastro doc associated with an ALS clinic.

I guess what amazes me the most the lack of patient centered care. And that's exactly what they are doing to you, Pete--assuming they know without any appreciation for you and your individual needs and desires. I am sorry ;-(

Tracy
 
Pete, Steph is right -- you don't have to get a PWC. You can wait, and get a collapsible chair on your own meanwhile, which is probably less than your Medicare copay for a PWC later.

Why can't you talk to your wife on BiPAP? Have you tried each of the nasal mask designs, e.g. cloth, prongs, silicone? My husband talked with us, on 24/7 BiPAP, the whole way through. Like you, he never had antidepressants or counseling, nor did I. We all find our own path, and you have every right to follow yours.

When someone at a clinic stopped being helpful, we stopped seeing them. We stopped the clinic entirely 2y before death. Life's too short to spend it with the clueless.

Tracy, you don't need a gastro. The tube should be placed in/by interventional radiology. Let us know if you need help locating the best option near you.

Best,
Laurie
 
Pete, I think your last paragraph sums it up for most of us. Doing what is best for us and our loved ones to make whatever time we have left as pleasant and comfortable as we can. Good luck to you and I hope you find that happy medium.
 
Pete, Steph is right -- you don't have to get a PWC. You can wait, and get a collapsible chair on your own meanwhile, which is probably less than your Medicare copay for a PWC later.

Why can't you talk to your wife on BiPAP? Have you tried each of the nasal mask designs, e.g. cloth, prongs, silicone? My husband talked with us, on 24/7 BiPAP, the whole way through. Like you, he never had antidepressants or counseling, nor did I. We all find our own path, and you have every right to follow yours.

When someone at a clinic stopped being helpful, we stopped seeing them. We stopped the clinic entirely 2y before death. Life's too short to spend it with the clueless.

Tracy, you don't need a gastro. The tube should be placed in/by interventional radiology. Let us know if you need help locating the best option near you.

Best,
Laurie

I just wish all doctors were like you, Laurie.
 
Pete,

I totally get where you're coming from. Unfortunately, it doesn't stop at clinic but in every walk (pun intended) of life. If I could count how many times XXXXX (relative) tells me if I did that I'd begin to feel better,.....you get it.

You and your wife are the ones who count....and I know you already have that figured out.
 
I had a doctor tell me very honestly last week that even when there's nothing he can actually do, there's still a drive to "fix" something, no matter how small, in order to feel like he's affected a patient positively. Then he recommended I try a particular type of movement therapy- so I knew it wasn't really going to be that helpful. Then he recommended cannabis. Which is moderately more helpful.

When people start talking about "quality of life", I understand it to mean easing suffering but not improving outcomes and not extending life. Are you fearful that any measure provided will extend your life by providing a modicum of relief from symptoms? The recommendations I see that you posted all seem to make your time less fraught, but not an attempt to prolong it. You're right about the bucket- it's a small one and only holds a finite amount of help to dip into.

The depression matter is another entirely- I think they're probably equating your resolve to stick it out medical assistance free as self punishing (ie:depressive/self destructive). I see it as you personally challenging yourself and is a source of pride for you- which is the very opposite of depressive. No doubt immensely frustrating for the people whose very job is to provide medical assistance, and no doubt they see you as stubbornly obstructing them from doing their job. YOU are the most important person in the equation though- and perhaps they've lost sight of you as a whole person (instead of the guy with ALS) and can't break out of their regular pattern of throwing stuff at the disease. I've found that medical people are very quick to say "depression" when they are unable to figure out how to make you do what they think is best.
 
Pete, you expressed yourself so well.

At the end of the day every PALS lives with the disease themselves, no matter what choices are made. As this is true, the choices should be made by the PALS!

It doesn't even matter if someone 'knows' a better option. Only the PALS lives with the choice.

I let my Chris make choices I thought were poor, because it was his right, and only hindsight would have shown which choices were 'better'. I will never know if I had better ideas, and that doesn't even matter. Chris did it on his terms, in his way, and I have always had total peace with that. In fact it is one thing that has helped me enormously since he died.

We decided that we were not going to simply spend the rest of his life sitting in waiting rooms and having our choices decided by a medical profession that could not cure him.

The only comment I will make is that I've spoken directly to PALS and had them speaking to me with their bipap on Pete, so I also wonder why you can't talk with yours on?
 
I know the feeling. About a month or so ago Tom had a spell where he was having trouble breathing. We went to the nearest ER. Surprisingly, they did seem to be aware of ALS and the issues with that. But they were doing a scan of Tom's lungs (I think) and caught a small part of his liver and noticed some spots that they thought could be metastatic cancer. They did some other scans to see if they could find cancer elsewhere and came up with nothing. They suggested doing a liver biopsy. The oncologist came in to talk to us and I asked what the treatment would be if it were cancer. He responded that it would be some kind of chemotherapy. I told him that we would like to go home and think about it. Liver biopsies are painful from what I understand and every time Tom has a doctor visit much less a biopsy it takes a week to recover from his fatigue. Since Tom would likely not survive chemotherapy in his present state we needed to weigh the pros and cons of having the biopsy. The oncologist was fine with that and gave me his card to call him if we decided to pursue it. We decided not to go down that road. The neuro at the ALS clinic was just shocked that we were not going to have the liver biopsy. We feel that if they are not going to be able to treat it anyway why go through the pain and fatigue involved. Some doctors "get it" and some don't. Ignore those that don't and choose the ones that do.
 
Steve also couldnt speak with his bipap. We tried nasal pillows,prongs, etc but he couldnt. I think the volume and force of air required limited his ability to speak. On the other side,not using it was pretty jorrible to see. No one likes to watch a loved one gasping or struggling to breathe. Steve and I got very good at "sign" language.
 
Pete I think the respiratory onset is quite a bit different
 
I can't speak at all while wearing my trilogy. My opinion, it's because I have no muscle tone left in my soft palate. If I even poem my mouth while wearing the nasal mask, my soft palate just flaps and I make stupid snoring or snorting sounds. I can't even get out one word while wearing mine.

Vince
 
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