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brittalisse
@brittalisse

Posts: 11
Joined: Jul 14, 2011

Difficulty Breathing & Autonomic Dysfunction w/ PD & Congestive Heart

Posted by @brittalisse, Tue, Mar 6 12:40pm

My sweet mother (78 yrs young) has been hit with a myriad of health issues. It started with a Parkinson's diagnosis about 5 years ago. For all intents and purposes, she has done well with that. No tremors – mostly just minor balance issues and deterioration of her physical fitness. She used to be a gym rat and always ate extremely healthy. She doesn't move quite as well and I think has lost some motivation for living as actively as she used to. But – all said, she's done well with it. In the last 6 months she has just spiraled downhill. She was getting horrible dizzy spells (passed out cold 3 times), weakness in her legs, horrible pain in her neck and back – but the worst symptom that has started is difficulty in breathing. She struggles with this all day, every day. Sometimes it's debilitating and other times it is manageable. We've had her into every specialty at Mayo (cardiology, neurology, pulmonary) and nobody has been able to really understand these breathing issues. Congestive heart failure is being managed. Autonomic Dysfunction is being managed and the dizzy spells have ceased. Has anyone else suffered with breathing issues and have you found out what caused it? Her lungs seem to be working just fine, per her pulmonary doctors. We started her on a very low dose of anxiety medication thinking maybe that was it? Anyways – really at a loss and feel so helpless. Let me know if this sounds at all familiar with anyone else?? Thanks and wishing everyone peace and good health.

REPLY

Hello, @brittalisse, and welcome to Mayo Clinic Connect. I'm so sorry to hear about all your mother's health issues and that you feel at a loss right now.

I wanted to be sure you met some of these Connect members who may have some thoughts for you on whether they or their loved one have experienced breathing issues along with Parkinson's Disease, and if so, why: @ggopher, @macbeth, @hopeful33250, @moso @retairforceman @elizabethbryant @meggotty @ruby7dnj and @mary2017.

Are you seeing any difference with the anxiety medication so far?

Thanks, Lisa. We've seen some improvement over the past few weeks. I think the lows aren't quite as low as they once were. She had lost a tremendous amount of weight, too. Normal for her is about 125 – 130 and she was down to 88 pounds. She's back up to about 101, which I think that alone is helping. The anxiety meds may have helped a bit, but the breathing continues to be a challenge.

@brittalisse Hi, friend. Sounds as if your mother has the same stuff I have. We are in the middle of testing for some form of Light Chain Amyloidosis, probably Gelsolin, an Amyloidosis from Finland, or perhaps Evans Syndrome. I have horrible spells of pulmonary Dyspnea sometimes. My lungs, although crowded with Amyloidosis nodules, etc., work fairly well, but the Amy fibrils seem to get into the sensory-motor autonomic nerve wires, and interrupt the lung controls and heart controls. And the weight loss is part of it for many Amyloidosis patients. At Mayo, Martha Grogan, Angelica Dispenzieri, and a bunch of others. Since Parkinson's has the same protein deposit pattern as these others, it might be worth the search to expand your reach to the rest of the protein disorders. The videos from Morey Gertz, Martha Grogan, and others at Mayo will teach you a lot. The primary search test will be sFLC (SERUM FreeLite(c) chain from The Bindints Site in the UK. Also search on Mayo for Amyloidosis and Parkinson's, and on AlnylamAct.com. Your doctor can help you with the last. You can also look at my little Amy dance routine at https://bit.Ly/1w7j4j8, under "Amyloidosis Dossier". But again, I have all the stuff you mention, including the pain.

Hello @brittalisse,

I found several articles on breathing problems and Parkinson's. They all seem to point to the "wearing-off" phenomenon of Parkinson's meds. After a certain period of time after taking the medicine (it can be 3 – 5 hours) the effectiveness of the carbidopa/levodopa begins to wear-off and the patient needs another dose. This seems to be the reason cited by these articles for the breathing difficulties. One of these articles is from the National Institute of Health and one from the Parkinson's Foundation.
https://www.ncbi.nlm.nih.gov/pubmed/19715385
http://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Breathing-and-Respiratory-Difficulties

Is she currently receiving oxygen therapy? I would love to hear from you again and know how your mom is doing. She is so fortunate to have you advocating for her!

Teresa

@oldkarl

@brittalisse Hi, friend. Sounds as if your mother has the same stuff I have. We are in the middle of testing for some form of Light Chain Amyloidosis, probably Gelsolin, an Amyloidosis from Finland, or perhaps Evans Syndrome. I have horrible spells of pulmonary Dyspnea sometimes. My lungs, although crowded with Amyloidosis nodules, etc., work fairly well, but the Amy fibrils seem to get into the sensory-motor autonomic nerve wires, and interrupt the lung controls and heart controls. And the weight loss is part of it for many Amyloidosis patients. At Mayo, Martha Grogan, Angelica Dispenzieri, and a bunch of others. Since Parkinson's has the same protein deposit pattern as these others, it might be worth the search to expand your reach to the rest of the protein disorders. The videos from Morey Gertz, Martha Grogan, and others at Mayo will teach you a lot. The primary search test will be sFLC (SERUM FreeLite(c) chain from The Bindints Site in the UK. Also search on Mayo for Amyloidosis and Parkinson's, and on AlnylamAct.com. Your doctor can help you with the last. You can also look at my little Amy dance routine at https://bit.Ly/1w7j4j8, under "Amyloidosis Dossier". But again, I have all the stuff you mention, including the pain.

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@oldkarl – thank you so much for the reply. I'm really sorry you're going through this, too. It's hard to watch someone you love dealing with something so difficult. I really appreciate the information and I'm going to look into all of this right away. Mayo did test her for Amyloidosis and everything came back negative. I wonder if there are other protein disorders though as you suggest. I'll spend time on this today and will let you know if I have any follow up questions for you. Thank you, thank you. Sending you positive energy today!!

@hopeful33250

Hello @brittalisse,

I found several articles on breathing problems and Parkinson's. They all seem to point to the "wearing-off" phenomenon of Parkinson's meds. After a certain period of time after taking the medicine (it can be 3 – 5 hours) the effectiveness of the carbidopa/levodopa begins to wear-off and the patient needs another dose. This seems to be the reason cited by these articles for the breathing difficulties. One of these articles is from the National Institute of Health and one from the Parkinson's Foundation.
https://www.ncbi.nlm.nih.gov/pubmed/19715385
http://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Breathing-and-Respiratory-Difficulties

Is she currently receiving oxygen therapy? I would love to hear from you again and know how your mom is doing. She is so fortunate to have you advocating for her!

Teresa

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Teresa – thank you so much. I will look into these today! I think we need to start keeping a log – when she takes meds and when symptoms appear. Maybe that would help to determine if the "wearing off" plays a factor! Appreciate the reminder on that being a potential culprit. She is not on oxygen therapy. Nobody has recommended that, but good idea to ask. She's my girl – I'd go to the moon and back for her. This is a great little community and support system – grateful for the quick and caring feedback!!

@brittalisse

My pleasure! I look forward to hearing from you again and do let me know if the "wearing off" problem seems to be the culprit.

Teresa

Hello @brittalisse

I was thinking about you and your mother. How is she doing with the breathing problem that you were discussing last month? Any changes in her symptoms or in her treatment? I hope that she is having some improvement.

I would love to hear from you when it is convenient.

Teresa

My husband, diagnosed with Parkinson's 6 years ago, has been struggling with shortness of breath. He is very active. His Parkinson's symptoms include tremor, fatigue, increasing balance issues, difficulty concentrating, and left-side weakness. He had a quadruple bypass about 3 years ago, and of course this shortness of breath whenever he exerts himself, has been alarming for the past year. He has had all kinds of pulmonary and cardiac testing and workups done at Mayo, without anyone being able to tell us why he is short of breath (heart and lungs are ok). Recently, I received a message from the Cardiology NP, telling me that she had conferred with the heart rhythm specialist in the Cardiology Dept (not my husband's cardiologist), and they want to test to see if his slower heart rates that don't increase greatly with exercise could be the cause of his shortness of breath. Doing my own research,, I found an abstract on the NCBI site online that proposes that shortness of breath may be a 'wearing-off' symptom in Parkinson's disease. We'll be looking into both these possibilities. I hope your mother finds some relief.

Hello @maxaz1 and welcome to Mayo Connect. I am a volunteer mentor and also a PD patient myself.

I am sorry to hear of your husband's breathing problems. Yes, there have been studies that indicate when the PD medicine begins to wear-off that breathing problems occur. Here is another article on that topic, http://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Breathing-and-Respiratory-Difficulties

I am glad to hear that he is active. What sort of physical exercises is he involved in?

I look forward to hearing from you again.

Teresa

Haha…exercise program…not at all. He does however remain active all day – except for nap times. He chops and hauls wood, he climbs ladders, goes up and down stairs all day, walks back and forth over uneven hilly terrain between his shop and the house. He takes some naps every day – but when he's up and around, he goes and goes, and goes. He will always choose the stairs over an elevator, a parking space at the further edges of a parking lot, saying "I'll leave the close spot for someone who really needs it." He says he feels better when he's "doing," and it's true – when he's sitting still, he has time to feel every ache and pain, and complain. He reminds me of that old Timex commercial – "Takes a licking and keeps on ticking." He's an amazing guy.

@maxaz1

I enjoyed your Timex commercial comparison – yes we have to keep on ticking!

I think that all of us with PD feel better when we are active and keep moving.

Teresa

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