Difficulty Breathing & Autonomic Dysfunction w/ PD & Congestive Heart

Posted by brittalisse @brittalisse, Mar 6, 2018

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.

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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.

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@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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Could her PD have been miss diagnose. The is common. My husband ,Lou, had this happen to him. He has MSA-C. He sees a movement specialist.

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Hi, @pcolunio - wanted to see if you may have been asking if it were possible @brittalisse's mom may have been misdiagnosed, as you mentioned happened to your husband?

@brittalisse - just wanted to check in with you and see about how your mother is doing recently?

@maxaz1 - how have things gone with your husband's shortness of breath?

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Yes this is what I was asking. Most people are misdiagnosed at first. Dr. have to see how patients do on meds and how fast they are progressing.
His breathing is getting worse. This is to be expected. This also leads to his ability to speak. So when the breathing is more difficult so is his speech. He works very hard on voice exercises all day but the ability is going down. This disease is so fast moving! I am think that by fall we may need a ramp. He is having a hard time going up the 2 steps from the garage to the house. We do have a chair lift in the house but not in the garage.
Thank you all for asking!!!!!!!!!!!!!!
If anyone want to know more about what we are going through please ask. I will be happy to share!

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