Debilitating Shortness of Breath in Parkinson's

[JosieDi]

I am a 70 year old female who has had Parkinson's disease for 12 years.  It has been managed  well for the most part.  Recently I have been having respiratory distress.  I have lost a considerable amount of weight and am down to 99 pounds.  I have had a thorough workup from my primary doctor and various specialists and everything checs out ok. In my 'off'' time I am struggling to breathe and feel I am suffocating.  My neurologist has me on Sinemet, Requip, Amantadline and Comtan.  She added a carbo/levo tablet this past week that dissolves on the tongue. .i have not seen anywhere that debilitating shortness of breath is associated with Parkinson's.  My neurologist thinks that this breathing distress is due to the wearing off of my meds although these  episodes can happen randomly.  Nedless to say it is affecting my quality of life.  Does anyone heard of this or have any suggestions?  Thank you.

[Clls]

I was just told I have of after dadt scan I was told I have copd now told I do not have copd. I do exercises everyday with walker but can not work out hard fist breathing problems when I stand or walk now can be when I sleep. Neurologist states it is not of related but primary thinks it can be. So friustratimg

[stargate12]

Great post!!Thank you Diana.
Hugs and love to you!!
Eva

[Matt1117]

I am 33 and have taken care of my 66 year old mom with PD for the last 5 years. She was diagnosed in 2004, been on PD meds since 2007, and Stalevo since 2009. (5 years). She has very heavy breathing around the time her Stalevo 100 mg is due (every 3-3.5 hours). The heavy breathing increases more in the evening. Her doctor told us the heavy breathing can be related to the medication. He prescribed Seroquil for anxiety for the evenings but she never wants to take it. She also gets high anxiety and I occasionally have to give her a low dose Valium in the evening.

She was taking Stalevo 100 mg on her own (not administered by me or the caretaker) every 2-2.5 hours, and she was experiencing heavy "banding" and muscle spasms around her stomach and back. This landed her in the ER for a week for a series of tests on her stomach as we thought there was something really wrong. They did not find anything, and the banding stopped when she went back to dosage every 3 -3.5 hours.

Last one, at one point a doctor took her off Stalevo cold turkey and put her on some other Parkinson's meds(carb/LEVO) but didn't taper her off the entacapo (3rd and often overlooked component of Stalevo). She went into violent tremors about 7 days after she stopped the Stalevo.

My mom is absolutely precious and I cherish every second with her. Reading these comments tonight really helped me. As I sit here the heavy breathing has decreased dramatically, 20 minutes after her Stalevo.

[ttmmff]

My mom is 82 and has not yet been diagnosed with Parkinson's.  These comments sound very familiar.  She has been in and out of the emergency room, hospitalized, etc. ever since she had surgery in April.  She has constipation, thick mucus in the back of the throat, trouble breathing and sleeping.  Also, stare straight ahead alot of times.  Does this sound familiar to anyone.

[Annieannette72]

It was good to read all these comments.  I have been having trouble getting a good breath for several months and wasn't sure my Parkinson's had anything to do with it but after reading all these comments I feel it does.  Thanks.

[georgina644]

All these comments have been very helpful.. I am a 60 year old female who was diagnosed with idiopathic parkinsons in may 2010 although my symptoms started about four years previously.  Recently I have been experiencing breathing difficulties.  My neurologist told me this is a parkinsons symptom which relieved me because I thought something else might be wrong.  It seems to come and go just the same as my other symptoms which makes me convinced it is to do with parkinsons.  If it was something else I think it would be there all of the time or most of the time.  I experience a stiff chin and am unable to speak properly sometimes.  It is like being two different people.  I can skip into work sometimes and other times have to concentrate really hard on walking at all.  Luckily I am a positive person and still carry on doing as much as I can when I can.

[Dianna51]

I was diagnosed with Parkinson's disease at 30.  I have confirmed my diagnosis by an FDOPA administered at Mt Zion in New York city where it was determined I was moderate to severe, and I also have 2 mutations in my Parkin gene.  I had DBS surgery.  About 6 years ago I was hospitalized for shortness of breath.  The Emergency physician called the Neurologist on call, who was the director of a movement disorder clinic at a local university.   He was also a neurologist who I had been evaluated by to have DBS Surgery (Deep Brain Stimulation) and at the evaluation told me I had delayed stress syndrome and not Parkinson's).  This was based on a walk down the hall and a phycological test.  He said I scored too high on the Psychological test to have PD.  Doctor's must have a bit of arrogance in their demeaner to be a doctor even though they are "practicing" medicine and are not all knowing.  We patients demand perfection of our doctors and' if they are proven wrong, turn around and sue them for their errors.  No matter how many patients they have seen and observed they are bound to get a few wrong.  We, as patients, should not expect perfection, and if are not helped by the physician, keep seeing a physician who is more experienced or start readlng research about  our illness.

My current phtsician's Assistant has more time to read up and acknowledges breathing disorders can be a part of Parkinson's.  Many of you mentioned that it affects your voice.  I am an instralmental person and worked as a pit musician for 20 years.  I am no longer hireable because of my breath control.  It can not be fixed but I still enjoy playing music with community bands.  I have also started voluntering at local schools in music and with Special needs children.  Makes me understand how little my problems are, especially the autistic children who live alone in a world of their own , unaware of other people, and unaware of the fact that they are lonely. Alot more is being learned aboout the brain with the interest of engeers making scanners.  It might not be too long before they understand PD.  I am now 59 and can barely remember life without PD.  Forgive the Doctors their trepasses, and accept your diagnosis if it is consistant with your symptoms, otherwise do a little research of your own.  Remember to live in the moment ,"This is a day your Lord made, rejoice and be glad in it," and be mindful of what you have.

Dianna51

[ILADVOCATE]

  Breathing difficulties, swallowng difficulties and as the condition advancates respiratory concerns can all be a part of Parkinson's. As part of this the ability to keep the nasal pacssages and laynx clear can occur. It would be worthwhile to discuss this with a neurologist who is a trained movement disorders specialist.

[candis18]

My mom has parkinson's and has problems blowing her nose and coughing up sputum that's in her throat??  I can tell she is short of breath as well.  Has anyone heard of this as a symptom??  She keeps wanting me to do something, and I'm not sure what.  She takes some meds for the PD, but had to be cut way back, because she was confused, and she knew she was confused...  once off the medication, the confusion went away..  Thanks..

[Fiddlin]

My mother is 80 and was diagnosed with PD 4.5 years ago.  For the last few years she has been complaining of shortness of breath.  She is experiencing periods of rapid shallow breathing that leaves her fatigued and unable to speak.  It doesnt seem to be associated with wearing off of her sinemet.  Her doc believes it may be anxiety.  I'm not convinced but she needs some relief and cant take much more.  She is losing weight and becoming more isolated.  

Any ideas?

[nissah46]

My dad (80) has just been diagnosed with Parkinsons after being in hospital with a rapid heart beat and feeling like he is suffocating. They have not said this is part of the disease, but it sounds like others share the symptoms.It wakes him up, and has happened while awake as well. The doctors thought it may be anxiety related, but how does that explain it happening when he is sleeping?

[pdpatient]

i am 69 year old male PD patient for the past 6 years. Lately I find that while singing for about 5 minutes, i feel shortness if breath, I don;t know whether  to attribute this tp PD. I am otherwise managing ok. Any comments? What should I do to get rid of this symptom?

[vac911]

I've been taking Stalevo for years now and have had breathing problems since the beginning 13 years ago. Recently my breathing problems have gotten worse.

My doctor had me on the Stalevo every 4 hours but I can't go 4 hours any more. It seems to run out after 3 hours, so I have to take it every 3 hours even though my doctor said not to take it less than every 4 hours.

What happens is I can't get enough air. My diaphram feels like it is not doing it job and I have to take big breathes even though I never feel like I can get enough oxygen. It seems a little easier if I press on my diaphram with my fingers. Also, I seem to be able to breathe easier if I get on my hands and knees.

I have just figured out that my heartrate jumps from normal 60 bpm to 90 bpm every time I am off and my Stalevo has worn off and I can "feel" my heart beating in my chest. When I'm "on" I don't notice my heart beating and my breathing is almost normal.

I don't understand why my heart rate goes up when the Stalevo wears off. It goes up even if I'm laying down.

Steve

[grayfeather]

My husband was finally diagnosed with Parkinson's last winter after being misdiagnosed with benign tremor.  Right away it was discovered that he was not breathing adequately and tests proved 3/4 of his diaphram is paralyzed -- from the Parkinson's and nothing else.

I think there is probably so very much not known about Parkinson's Disease that many symptoms will continue to be missed until adequate training is given to neurologists.  Also, physicians who treat Parkinson's should be specialist in this disease.

[erinpdx]

I'm so glad that I ran across this thread. My mom is 81 and has had PD for 8 years. Almost from the beginning, she complained of shortness of breath. We've been to 4 neurologists over the course of time and they all say this is not PD-related. She's had innumerable workups from pulmonologists and cardiologists, but everything comes back OK. She's only on Sinemet. Her difficulty breathing has increased dramatically in the last few months; I spent the evening in the ER with her this week, as she complained of not being able to breathe or move. Still, they didn't find anything. We are going to start PT again and I'm taking her for a neuro-psych eval this week, which she is not happy about. My only thought at this juncture is that it's just part of the progression of the disease and/or it's related to depression/anxiety, which apparently can go hand-in-hand with PD and manifest physically. I'm hoping a mild anti-depressant might help. I'm also going to try to convince her to try some acupuncture, as I've heard that can be helpful. If anyone has other ideas, please share. Thanks!

[Nicknameless46]

You need to have a workup of your respiratory condition just to be certain you don't have some form of emphysema or asthma contributing to your shortness of breath. I also have Parkinson's - for 12 years now - and also have severe COPD for which I'm on oxygen 24/7.  That's not pleasant, but at least I can breathe. My doctor believes that much of my shortness of breath is due to the wearing off of my Parkinson's meds, but also says that shortness of breath is shortness of breath - which means it must be kept at a tolerable level regardless of how many factors are contributing to it. No one should feel that they're suffocating - that's not just part of the disease; go to an internist or pulmonologist if your neurologist just treats your Parkinson's and ignores your shortness of breath.

[andrewPD]

My mother is 75 this year, and she sounds almost exactly like you and the "shakymama" above. She has been diagnosed with PD for about  25 years now, and she has taken all the medications you and shakymama listed above. She has been having the shortness of breath episodes for about 5 years now - at times, she swears she's going to die, and then she's fine in about an hour or so. She deals with it by taking a warm heating pad and clutching it to her chest until the tightness in her chest goes away. She has been checked out for heart and lung problems, and all was clear. Her prior neurologist kept telling her during repeated visits that shortness of breath had nothing to do with PD - after doing some web searching, now we know that it's "normal" and that neurologist didn't know what he was talking about. It just seems to be part of the PD progression.
I just pray for my mom to keep dealing with it day by day and will pray for you, too.
Just know - you're not alone. See the following sites for some reassurance.
http://ucanhealth.com/topics/?T=secondary_symptoms_parkinsons_disease
and
http://www.ucsfhealth.org/adult/medical_services/neuro/parkinsons/conditions/parkinsons/signs.html

[shakymama]

I have had the same symptoms, I have had PD for 8 years. I should say I was diagnosised 8 years ago, but my symptoms went undiagnosised for several years. I have also struggled to keep weight on I am 5'4 and I am at 115 lbs, this is good. I have been hospitalized several times because of my sensitivity to medication changes and PD has effected my autonomic system. My blood pressure can drop very rapidly causing me to feel as if can't catch my  breath, I know that I had better sit quickly on my own if not I going down and it might not be so gently.  
I take requip,Selegeline, Amantadine, Stalevo, Sinemet I also take Fludrocortozone this helps me to retain fluid and keep my blood pressure up.  I also find that if I drink alot of water, when my weight gets too low I drink Boost in addition to my regular meals. and get lots of exersize (walk, Swim, use exersize equip. something that really works my muscles ) I feel my best. My best advise I can give it does sound like end of dose failure see how the med change does, get your weight back up and if you are an active person continue on, if not talk to your Doc about starting with physical therapy. Good luck and God Bless.