Share this:
brittalisse
@brittalisse

Posts: 11
Joined: Jul 14, 2011

Breathing Issues, Weight Loss and Lack of Appetite

Posted by @brittalisse, Aug 28, 2017

Hi everyone. My beautiful mother is about 3 years into her Parkinson’s diagnosis. She had been doing quite well, with symptoms being not much more than a nuisance. In the last few months things have gotten significantly worse and I’m searching for direction as we haven’t found answers with her doctors. I do have a request into Mayo for an appointment and am waiting to hear back – but in the meantime, am hopeful someone in this group might have some feedback. She is dealing with severe shortness of breath. She describes it as a very heavy feeling. She’ll get extremely weak and almost like her legs are going to give out on her. When she lays down, it seems to get a little better, but it takes quite a bit of time before it does. It’s been happening more and more frequently. I don’t know if something is physically preventing her from getting air or if she is having anxiety/panic attacks – or both, with the former causing the latter and magnifying it. Also – she has lost her appetite and has gotten very thin. She eats like a bird and we can’t seem to get her to eat more. I don’t want to force her as there is obviously something preventing her from wanting to take in food. She says she feels very full – but is just getting to be skin and bones. She has dealt with constipation, so perhaps that is part of the problem? I’m really at a loss and am just so worried about her. Feeling so helpless and am just praying that we get into Mayo. In the meantime, does anyone have experience with these symptoms? (Her other symptoms have been shuffled walking, but she is still very mobile and able to do everything, some memory/confusion issues – but not severe, hallucinations from the medication – but not severe, very tired, very mild tremor – not severe at all.

Thank you in advance – greatly appreciate any feedback you have to offer. Also very happy to have found this group as I’m feeling so alone in this. Love my mom and would move heaven and earth to keep her feeling good.

Britt

REPLY

Hello Britt @brittalisse

I appreciate your question regarding your mom’s situation. Your mom is quite fortunate to have you as her advocate.

You say your mom’s doctors have not given you any answers for these problems she is experiencing. Are you directing these questions to her neurologist, primary care doctor or cardiologist? The difficulty breathing can be related to Parkinson’s. I found an article from the NIH https://www.ncbi.nlm.nih.gov/pubmed/19715385. Here is another article, http://www.pdf.org/breathing that also speaks to breathing problems.

I suggest that you read both of these and then once again talk to your mom’s doctors about her medications. If you don’t get good answers, you should continue to pursue a second opinion.

If you read these articles, you will see that it discussed shortness of breath as a “wearing-off” symptom of the PD medication, Levodopa/Carbidopa. Is this the med that your mom is taking for her Parkinson’s?

Teresa

Liked by mojo1965

Hello
I have been diagnosed with PD about four years ago.  I have similar minor problems with my hands trembling  and find writing/printing difficult.  I also am losing interest in eating when being served with a meal of meat, potatoes and veggies and prefer a sandwich or soup more preferable.  I have lost some weight but had lots to lose so that isn't a problem.  No problem at all with breathing.  My main problem is legs and balance – I have fallen a few times and cannot stand except for a few minutes without having to sit down as my legs also feel like jelly.  I find that laying down helps me.

I have you get help for your Mother.

Evelyn

Hello Evelyn, @ruby7dnj

I appreciate your adding to our discussion about PD. I see that you are a new member to Mayo Connect.

I would like to introduce you to other members of our PD discussion group, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem @bobbieingeorgia @gulfer @mojo1965 @brittalisse. I am sure that will also add their welcome to you as well.

Please share with us, as you feel comfortable, some more information about your PD diagnosis. For example, did you have symptoms of PD a long time before you were finally diagnosed (many of us have had symptoms for years before a diagnosis was made)? Have you had any treatments, like physical therapy, to help strengthen your legs and help with your balance?

Teresa

@hopeful33250

Hello Evelyn, @ruby7dnj

I appreciate your adding to our discussion about PD. I see that you are a new member to Mayo Connect.

I would like to introduce you to other members of our PD discussion group, @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @aperob @caryp43 @burgle @macbeth @knightkris @mariemarie @pjsammy @techi @sandycerem @bobbieingeorgia @gulfer @mojo1965 @brittalisse. I am sure that will also add their welcome to you as well.

Please share with us, as you feel comfortable, some more information about your PD diagnosis. For example, did you have symptoms of PD a long time before you were finally diagnosed (many of us have had symptoms for years before a diagnosis was made)? Have you had any treatments, like physical therapy, to help strengthen your legs and help with your balance?

Teresa

Jump to this post

My husband has Parkinsons and as he ages, it becomes more difficult for him to navigate without falling, or enjoying a conversation without drooling.  He is compromised further by vision problems.  He now uses a  roller walker.  I'm afraid to leave him alone for fear he will fall.  I employ a part-time qualified care-giver.  It may not be sufficient.  
He has terrible pain which our primary care physician offers no remedy or dx.  
He also sleeps excessively, falls asleep watching TV in the morning, afternoon.
He was on the excelon patch for a few years which his new physician decided to stop. He has never shown any memory loss and is intellectually very sharp.  
 I don't know if his primary care physician did this in consultation with his highly regarded Parkinsons specialist.  He has never shown any memory loss, so the patch may not have been necessary in the first place.  But she has also reduced his medications, again may not have been in consult with the neurologist.
I appreciate comments.
Sandy

Hello Sandy, @sandycerem

I appreciate your adding to this discussion. I recognize your concern about medication changes that are made by someone other than your husband’s neurologist.

Parkinson’s does create more disability as time goes on, but with the proper medication and exercise we can have some control over the amount of disability.

Also, are you aware that chewing gum can help control the drooling? It keeps you swallowing and therefore you are less likely to drool from the excess saliva. It’s an easy thing to give a try, does not require a prescription and it is not expensive.

Has your husband seen his neurologist recently? If not, please consider doing that and having the neurologist review his symptoms and his meds.

Teresa

@hopeful33250

Hello Britt @brittalisse

I appreciate your question regarding your mom’s situation. Your mom is quite fortunate to have you as her advocate.

You say your mom’s doctors have not given you any answers for these problems she is experiencing. Are you directing these questions to her neurologist, primary care doctor or cardiologist? The difficulty breathing can be related to Parkinson’s. I found an article from the NIH https://www.ncbi.nlm.nih.gov/pubmed/19715385. Here is another article, http://www.pdf.org/breathing that also speaks to breathing problems.

I suggest that you read both of these and then once again talk to your mom’s doctors about her medications. If you don’t get good answers, you should continue to pursue a second opinion.

If you read these articles, you will see that it discussed shortness of breath as a “wearing-off” symptom of the PD medication, Levodopa/Carbidopa. Is this the med that your mom is taking for her Parkinson’s?

Teresa

Jump to this post

Teresa – thank you so much for the thoughtful and thorough feedback. I read both articles and they definitely seemed as though they might explain some of what is happening with her. I really appreciate it. We have an appointment with her internist this weekend and I’m still trying to get her into Mayo. Your advice provided some good notes for me to ask about. Thank you so much.

@ruby7dnj

Hello
I have been diagnosed with PD about four years ago.  I have similar minor problems with my hands trembling  and find writing/printing difficult.  I also am losing interest in eating when being served with a meal of meat, potatoes and veggies and prefer a sandwich or soup more preferable.  I have lost some weight but had lots to lose so that isn't a problem.  No problem at all with breathing.  My main problem is legs and balance – I have fallen a few times and cannot stand except for a few minutes without having to sit down as my legs also feel like jelly.  I find that laying down helps me.

I have you get help for your Mother.

Evelyn

Jump to this post

Evelyn – thank you for the nice note. When you say your legs feel like jelly – is it a weakness? My mom thinks she maybe has a nerve problem or something that is causing the weakness that forces her to sit down quickly to prevent collapsing. Maybe that is actually the Parkinson’s though? Sending you very warm wishes and hope this finds you feeling good today.

Hi there .. the weakness in my legs is always there .. I always keep moving them to try to strengthen them but to no avail. I have actually put my back against a wall and slid down to keep from falling but then couldn’t get up. Lucky for me I have a good hubby as well as a Lifeline Support.

Have a good day.

Evelyn

@ruby7dnj Hi Evelyn

Falls are a common but serious problem with PD. Is your doctor aware of this weakness? Have you talked with him about some physical therapy?

Teresa

@hopeful33250

Hello Britt @brittalisse

I appreciate your question regarding your mom’s situation. Your mom is quite fortunate to have you as her advocate.

You say your mom’s doctors have not given you any answers for these problems she is experiencing. Are you directing these questions to her neurologist, primary care doctor or cardiologist? The difficulty breathing can be related to Parkinson’s. I found an article from the NIH https://www.ncbi.nlm.nih.gov/pubmed/19715385. Here is another article, http://www.pdf.org/breathing that also speaks to breathing problems.

I suggest that you read both of these and then once again talk to your mom’s doctors about her medications. If you don’t get good answers, you should continue to pursue a second opinion.

If you read these articles, you will see that it discussed shortness of breath as a “wearing-off” symptom of the PD medication, Levodopa/Carbidopa. Is this the med that your mom is taking for her Parkinson’s?

Teresa

Jump to this post

Hello Britt, @brittalisse

Thank you for the feedback. I am glad that the articles gave you some new ideas. I hope that your mom’s appointment goes well. Will you update us and let us know how she is doing?

Teresa

@ruby7dnj

Hi there .. the weakness in my legs is always there .. I always keep moving them to try to strengthen them but to no avail. I have actually put my back against a wall and slid down to keep from falling but then couldn’t get up. Lucky for me I have a good hubby as well as a Lifeline Support.

Have a good day.

Evelyn

Jump to this post

Hi Evelyn,
My Dad (who is in end-ish stage PD and dementia) also had weakness in the legs which led to a serious fall and broken hip. Once we got him home from the hospital we purchased one of those small pedalling gizmos you put on the floor in front of any chair…like cycling but my dad sits in a lift chair lazyboy while he’s doing it. He is almost entirely immobile/bedridden except he has the strength in his legs to use a walker to the bathroom. One person on each side makes sure he doesn’t tip over but the leg strength is amazing and I’m sure it’s from the “cycling”. They are quite inexpensive new and I’m sure even more reasonable pre-loved. Maybe it’s worth a try?
Good Luck,
Monika

Hi Monica .. I have never heard of that but will definitely give it a look .. much better than a broken hip. Good for you Dad using it. Thanks.

Evelyn

Please login or register to post a reply.