PSP Association
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Wheezing and coughing

Hi there -

My mother was diagnosed with PSP two years ago. She has gradually declined in many ways - dizziness and falling, coughing, disorientation, tiredness etc.

She's developed a terrible cough recently and I've never heard anyone wheezing as badly as she does. The doctor has given her a nebulizer (does anyone know how effective this is?!) and I'm very worried that her cough will just continue to worsen, with the possibility of the onset of pneumonia.

The whole grieving process for myself (I'm her eldest son), her husband (my father) and her other children is very difficult. I get depressed about it all a lot. Although I don't think I'm clinical or anything, it's so awful. Does anyone else suffer from that?

Thanks for listening.

Charlie

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Charlie you would be abnormal if it didn't get to you. I think we all suffer as a result of this condition. Even when our loved ones leave us for good it takes a long time to get over it. It is such a cruel thing?

I am so sorry that your family are facing it. Don't be hard on yourselves. Just let your Mother know you love her. She will remember that. Don't forget she can hear you even if she struggles to breathe.

In my husband's case he was in hospital when he used a nebuliser. It did seem to help him for a while. If you are unsure of what the doctor is doing and why don't be afraid to ask. It doesn't matter if you feel foolish. Guaranteed you already know more than the doctors! Just occasionally they tell you something you don't know. This site is full of kind people who know more than most doctors ever will. So stay in contact.

Marie x

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Thanks Marie, I appreciate it

Charlie

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It is so hard for both patient and cargiver. Keep on one day at a time is what i have to do. Take care and stay in contact this has really blessed me and help doctors tell us nothing. Love these people here that tells it like it is. Good listeners.

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Charlie, my children are feeling the same extraordinary sadness. At this point I think the youngest, (only 19) is having the hardest time, but they are all struggling with emotions . One of them cries each time she leaves after she is with him, one tries to help him and then is angry with all of us feeling we should be doing more. Our one daughter laughs and seems real upbeat, yet can barely deal with her day to day life and job because she is so anxious about his health. One of our sons is re-evaluating his whole career to spend more time with his own son. He is depressed realizing how fragile life is.

I think your feelings are of a kind and loving son. I’m sure this is not at all the life you wanted or exspected for your mom. It’s So sad for her, but also for you and your family . It’s difficult to worry, grieve, and still help love and support her. I hope that your family members can provide support for you, her and your dad. Sadly, my family, that love each other very much, can sometimes be more critical of each other because of the stress they are all under.

Please do not be embarrassed to seek help. Sometimes seeing a doctor to help yourself get through the tough times is the best and strongest thing we can do for ourselves and our family.

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Thanks Karyn...yep, it really does put an amazing amount of strain on me and my siblings and my father and the emotions involve sadness, grief, anger, frustration all sorts of things, not to mention how one feels the other should be doing more etc. It's really a terrible illness. Thanks so much for your response, I really appreciate it, Charlie

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Yes thank you for sharing.

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This is one hell of a big trip for all on it. We didn't take this class. We don't know how to act - our kids don't know , our friends don't know - my poor 90 year old parents are devastated and have no idea what to do. Watching them watch my husband try to walk with their hearts breaking is tuff. Not being able to fix this PSP load of crap is so frustrating adding to it the insult of having nothing to blame. Man o man - we should all be clinical and we all would be if we just had the time! In the meantime some of us have wine and each other.

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Thanks Alicia, for sure. It's just so awful for everyone involved. So tough to stay strong and make your peace with it all.

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Hi Charlie

PSP patients have a hard time swallowing their own phlegm so this could be a reason

Please try and see if she is happy to lie to the side with her face pointing slightly downwards - this may help the mucus/phlegm to trickle down to the side of the cheek - and that can be removed with a finger or throat suction tube (if you have a machine) - but please be very careful since patients are very sensitive and it's very easy to injure the inside of the cheek

Sorry for the distress - it happens with everyone else - Teepa Snow is an expert on caring for dementia patients (look at her videos on youtube) and she says that statistically 3/4 families break up while caring for a dementia patient - it's mandatory for caregivers to take 1 or 2 day breaks or you will yourself break down

Best wishes for the hard struggle and please feel free to ask or comment in this forum

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That's really interesting. It's amazing how much strain it puts on us siblings and on my father. My mother is still at home living with my father (all the children live away now) and there is a carer full time there, but it puts a huge strain on my father and I think it would be easier if my mother was in a care home. But she would hate that and we can't do it to her. It's tough, very sad. Thanks for you reply, I'll look up Teepa Snow. Best, Charlie

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I am sorry Charlie - I wish I could say that it gets easier

My mom had a very hard time dealing with my dad as well - we had 3 carers at home and in spite of that she couldn't deal with the stress

When he became bed-bound and we made the (horrible idea at that late stage) decision to put in a PEG tube, she couldn't manage any more and I returned home to take care of him 24/7 - I've read other people's comments here and everyone either returns to take care of their parent full time or the patient gets moved to a facility (which they hate since changing the surroundings of a dementia patient can have a bad effect on their mental well-being, but then the carers are physically/mentally breaking down)

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I'm so sorry you are going through this. My dad developed a cough with thick phlegm and wheezing and terrible asthma. He had a couple of xrays for pneumonia, but the symptoms were just part of PSP. Budesonide in the home nebulizer quickly got the asthma under control for the long term.

The Budesonide made a huge improvement in my dad's quality of life, but the only reason I got it was because I asked the doctor for it specifically. None of the other meds the doctor prescribed had worked, but my sister has chronic asthma and she had recently started Budesonide with great success.

We also used Albuterol in the nebulizer for fast acting asthma relief every 4 hours as needed--we didn't need it as much after the Budesonide. For several years, Zantac 150 (Ranitidine) solved the problem of the thick phlegm. The acid reducer sometimes keeps the stomach from producing mucus. Occasionally we also used Robitussin DM and similar prescription cough syrup. I hope this is helpful and that your mom gets relief soon! It is an emotional roller coaster for the families. Wishing you and your family better days ahead.

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Thanks Carlam, that's really helpful. I'll see how my mother goes with the nebulizer she currently has and keep the Budesonide in my back pocket if there's no improvement.

Yep, it's a real emotional rollercoaster that's for sure. Awful really. So sad for my mother who gave her children her whole life really and has been an amazing mother and wife. There's just no accounting for it.

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