Hello everyone! My mom was diagnosed with PSP 6 years ago. She has the usual symptoms such as stiffening of the neck, can't move her eyes and having a hard time eating solid food. As of now, she's eating pureed food and doing fine. What bothers me is that she's been in the hospital twice; the first one last dec 2015 and the latest was June 2016. She visited her respiratory doctor yesterday since she's coughing all day long. The doctor gave her cefixime and advised us that she should get tracheostomy to remove the phlegm in her lungs. My family and I, including my mom, don't wanna get the surgery since once her trachea is open we have a feeling that it might worsen her condition. Do you have any suggestions on how to prevent her getting pneumonia again?? Oh, I also forgot to mention that she had her vaccine for pneumonia and flu. I hope someone helps. Thank you so much and have a great day!

12 Replies

  • You might ask her regular doctor if she stopped swallowing, if that woudl prevent stuff being sucked into her lungs....This procedure is also surgical and involves a feeding tube. It may clear the epiglottis from foreign matter getting through it. This is as invasive as it gets and she'd have to stop eating as her main way of getting nutrition. My husband has one and has regained 20lbs that he dropped when choking on food.

    Good luck big decisions never easy


  • Can your husband still speak clearly? I'm afraid I might not be able to communicate with my mom if she gets the surgery.

  • The only way to minimize aspiration pneumonia is to limit the amount of food/liquid that is swallowed, which means the patient would need a PEG feeding tube. But even with a PEG, they can continue to eat/drink by mouth, albeit a considerable risk as the disease progresses. My wife had a PEG for almost two years before she ultimately passed due to aspiration pneumonia. She either aspirated from her own saliva or else she regurgitated her feed. I also recommend everyone with advanced stages of PSP to get a portable suction machine. We had one for about 4 years, even prior to her PEG insertion. As for the tracheostomy, I have mostly heard bad things, as it can be very painful for the patient to have suctioning performed through the trachea. And it requires a lot more care. The PEG was a simple outpatient procedure and very easy to maintain. Definitely tough decisions for both the patient and their family. We decided on the PEG because my wife was so young, only 54 at her passing.

    God bless you and your family.


  • PEG was actually advised to my mom months ago but she's totally against it. Now, I regret that we didn't get her a PEG. My mom is 56 yrs old and I'm hoping she'll live longer. I am so sorry to hear about your wife.

    May God bless us all!

  • WOW! Sounds almost identical to my wife. She was diagnosed in 2010 with Parkinson's and in 2011 they determined it was PSP. But she was showing some symptoms back in 2008.

    My wife was a hair stylist for about 10 years. Was around a few chemicals to color and perm hair. She never lived on a farm, nor drank well water. Was never around that many pesticides. Never smoked or drank alcohol. Her only bad habit was she loved to shop for clothes. But what woman doesn't. :-)

    We like is the US in Kentucky. Where are you guys located?


  • My mom was also diagnosed with PD but I can't remember when. She worked in a factory before but not so long and decided to do an office work.

    I wanna bring my mother outside but it is so polluted and she just wanna stay at home.

    We're from the Philippines :)

  • Sorry to hear about your mom @arenna. I can't speak to the tracheostomy issue, but I can you advice that my SLT gave me. She has told me to make the teeth are brushed each time after I eat or snack. This will help with prevention of bacteria build up inside my mouth in the case that I do aspirate it lessens that harmful bacteria getting into my lungs I have also had a pneumonia shot but I'm told not the effective in the case of aspirated pneumonia. Hope you get some good advice.


  • Thank you for the advice daddyt. I've also read it somewhere and we make sure she brushes her teeth regularly. I hope you'll get better!

  • Interesting daddyt...makes sense!

  • Hi Arenna, I'm probably repeating other people's replies but I don't think the trachea route is the best option. Psp patients aspirate whether they are feed orally or via a peg. Ultimately the majority suffer bouts of pneumonia. I don't think this can be avoided.

    I wish you much love in your difficult journey.

    Michele xxx

  • That's why I'm having doubts about her getting a surgery. Thank you so much for your kind words!!

  • You are more than welcome. I'm not a doctor but I do have experience of a psp patient and have exhausted my research as my mum is the sufferer. I personally haven't heard of psp patients going down this route. Keep asking advice to enlighten yourself. Good luck in your decision xxxxxxxx

You may also like...