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How much does quality of life fit into medical decisions?

Is is time for a PEG tube?

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#1 Beau's Mom

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Posted 11 July 2013 - 02:13 PM

Hello Dr. Okun,

According to the speech/swallowing therapist who read my May swallow study, I no longer have motility in my esophaguse and gravity must do all the work. She recommended eating small amounts every two hours with Ensure Clear and protein powders to supplement. I can only eat at most about 1/2 cup of moist pureed food at a time.

My Sinemet is q 3 h 6 AM to midnight, plus I take several other meds during the day. They cannot be swallowed with water and require a small spoonful of applesauce with two swallows of ice water for each pill. I must take them slowly then sit upright for at least an hour afterward to facilitate gravity and getting the meds into my stomach. When I have to take 8 to 10 pills, the entire process, which is quite painful to my esophagus, takes about 2 hours.

The pain is stressful. Since that study in late May I have lost 18. lbs. I have settled around the low 120's, but am getting extra nutrition while I am hospitalized awaiting placement in assisted living. My MDS has been out of the country but has not talked directly to me since his return, despite a request to have him call me.

Having to adjust protein intake around every 3 hour Sinemet is difficult at best. The nutritionist has recommended a PEG tube with nighttime feedings, but nobody else seems to agree.

This has deeply affected my mood and quality of life physically, mentally, cognitively and emotionally. Do MDS take quality of life into consideration in making decisions on things like PEG tubes? If one does not, should a PWP seek another opinion?

Thank you.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#2 Dr. Okun

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Posted 11 July 2013 - 04:04 PM

Another opinion could be helpful. Yes, we should all consider quality of life in these decisions. In many cases like yours I have found a PEG tube a great supplement to improve nutrition and help weight gain.

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#3 miracleseeker

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Posted 11 July 2013 - 04:55 PM

I think Peg tube is the solution and quick fix but not good for quality of life. How you feel mentally is a big factor also. The happier and loved you feel the more you are willing to tolerate things and have the patience to follow through with the process. If you have people who care about you around to stimulate and encourage your recovery you might notice you will eat more and therefore gain back some of the weight. Stress can do a lot of damage.

Peg tub looks painful and uncomfortable and permanent. Sorry but I am not a fan.

#4 Dr. Okun

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Posted 12 July 2013 - 05:21 AM

Its no problem, it should be a personal choice for everyone and we should respect the patient's choice and point of view. PEG works great for some, but not all Parkinson's disease patients.

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#5 Beau's Mom

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Posted 29 August 2013 - 07:46 PM

Dr. Okun,
I have lost 12.5 lbs since I first wrote on this topic in early July. The same problems remain: I can only swallow moist pureed food 2-3 oz. at a time. I must take meds with applesauce or baby food bananas and ice water, and an hour later my esophagus still feels tight and painful. I've had manometry (which the nurse indicated showed something, but which the Gastroenterologist told me yesterday was normal, a negative pH test, an endoscopy with biopsies which he expects to be normal. Now I must wait until September 10, 2013 for a gastric emptying test. I was told they are just checking everything to make sure it is not something they can fix without me having a feeding tube. I'm beginning to question my reality and my sanity. How can the tests all come back normal while I still have such difficulty getting food to process through? I don't understand how a gastric emptying study will show anything when the feeling of fullness and pressure is in my chest. It feels like I'm getting the run around. Again, it boils down to quality of life issues. How many more tests can they run? If I lose 4 more lbs., I will be underweight according to the BMI, which is unrealistic based on my age (60). Please advise if you can. Thank you.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#6 Dr. Okun

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Posted 01 September 2013 - 06:05 AM

These are all difficult problems with gastrointestinal and swallowing issues in the setting of Parkinson's disease. You are doing a great job checking every possibility off the list. If the gastric emptying is normal and you still persist with swallowing issues and are having difficulty with nutrition/eating, I would consider the placement of a feeding tube (a PEG) tube and also swallowing therapy from a swallow therapist (who can also evaluate swallow safety and follow you over time).

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#7 Beau's Mom

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Posted 01 September 2013 - 08:23 AM

Thank you, Dr. Okun. I will try to be more patient. It is extremely time consuming and tiring to fit q 3 h meds that have to be taken with applesauce around pureed/liquid protein and other foods all day long, and I'm getting far less than 1,000 calories a day. I am tied to the refrigerator and microwave to warm up ice cubes of food, or I just don't eat. I still want to have a life!

Thank you for allowing my little outburst of self-pity. I'm done for now. It's good to know they are being thorough.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#8 Dr. Okun

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Posted 02 September 2013 - 07:10 AM

Keep fighting and keep advocating and keep getting those calories down.

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#9 miracleseeker

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Posted 06 September 2013 - 05:30 PM

When my mom's best friend died suddenly of a stroke years ago, my mom had major spasms in her esophagus where she stopped eating most soild foods and lost about 15 pounds in 2 weeks time. Every test came back normal and then she finally realized it was all her head. The anxiety of death was too much for my mom and she just shut down. Slowly she recovered and gained back the weight.

The more a person digs into what is wrong the more traumatic it will become and the focus is on that issue all day long. This is just an opinion. Relax and hopefully everything will work out.

#10 Beau's Mom

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Posted 06 September 2013 - 06:06 PM

Thank you, miracleseeker. Much of the stress of May, June and July has been removed from my life, and the swallowing issue remains. It began this time last year, and has progressively worsened. I've been in weekly therapy most of that time, and issues have been addressed and grieved appropriately. Other than bedsores, healed but still very tender from the severe weight loss, and lack of proper nutrition, I feel pretty good. I am enjoying lots of Dove dark chocolates these days. I will see my PCP on Monday to find a comfortable way to sit. Since yesterday even clothing is irritating to the skin on my backside. I've discovered that I can roll up a feather pillow and sit until my pills get through my esophagus with my backside handing over the roll. Otherwise, until Monday afternoon, I will be watching movies laying on my stomach with three pillows under my hips to keep the sore areas open to the air. I will not be posting photos! I have two new Jodi Picoult novels and several DVD's the library lady brought for me to watch, so I will at least have entertainment. If, in the end, I find I can eat again, they can always remove the PEG tube, but now my body needs sustenance and my butt needs some real cushioning, not from a medical supply store. Thanks again for sharing your mom's story.

Dianne
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#11 miracleseeker

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Posted 08 September 2013 - 04:16 PM

I do hope you will get better results soon. You are a brave woman.

#12 Beau's Mom

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Posted 11 September 2013 - 12:32 AM

Dr. Okun,

I just wanted to give you an update. After the biopsies from my endoscopy came back negative, I was scheduled some ten days later for a gastric emptying study, for which I was told I would be required to eat sandwiches. When I told the scheduler I can only tolerate small amounts of moist pureed food, she checked with the radiologist who said they would use oatmeal, which I am also not allowed; I have been advised to eat only cream of wheat. In the meantime, I've lost so much weight that, although the bedsores have healed, it is very painful for me to sit of lay on my back. I spent 95% of the last five days on my stomach or side. Yesterday my PCP prescribed a topical ibuprofen-type gel BID. So far the relief has been minimal. I had to cancel the gastric emptying study and neuropsych testing that had been scheduled for 6 weeks because I cannot sit for more than a few minutes.

I was told by a nurse that they could not place a PEG tube without an endoscopy first. The gastroenterologist said that was not true. Now I have been told that they can't place the PEG tube without the gastric emptying study. I know my stomach is emptying well because my Sinemet, which is only absorbed in the small intestine, works every time, every three hours.

As the complications of my continued weight loss continue, I have not yet received an explanation for why all these expensive, time consuming, expensive

tests are required before a PEG tube can be placed. My MDS's nurse will be calling me tomorrow. Can you tell me if it is mandatory to have this gastric emptying study prior to having a PEG tube? I trust you to give me an honest, lucid answer.

Thank you again.

Dianne Dickerson
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#13 Dr. Okun

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Posted 11 September 2013 - 01:28 PM

This is not my area of expertise but I do believe it is possible to place a PEG without a gastric emptying test.

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips





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