My guy is having trouble clearing his throat. It is like he does not have enough breath or energy to clear it out. How do I know if he is having aspiration Pneumonia if there is not any green coming out. I do not want to wait till the green stuff comes. I want to try and treat him before it gets too bad. He is on hospice, but they say his lungs sound clear.
Should I try the GP that knows nothing about PSP? I have heard some of you talking about a suction machine. I'm not sure if he needs that, or what I should do to help him.
Any advice will be appreciated. Thank you, Deb
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mthteach
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Hi - it's great you are being proactive - my dad's lungs were clear on hearing too but an X-ray indicated some aspiration - so an X-ray can help
Not being able to clear the throat does become a problem - one trick is to try and tilt the patient on side with their head on the side and tilted downwards a bit so that any phlegm etc can trickle onto the sides of the cheeks and out - I would put my dad on the side and wait for the mucus/saliva to slide to the side and then suction it out with a suction machine
They told us that if aspiration occurred that he would be flushed and hot and be agitated but Dad showed none of these symptoms. He was just generally off colour. He is in hospital at the mo on an antibiotic drip. X
My dad complained about pain in his 'ribs' blaming the fact that I had had to get him in and out of bed a couple of times, dragging and pulling him - but his breathing was very short and laboured and he was very tired/weak, but no fever. He had no noise on his lungs initially, so the doctor took some blood which showed bacterial infection, so she prescribed antibiotics. The next day, he developed a temperature, she checked his lungs, now there was noise. My dad also takes a mucus-loosening drink in the morning.
It's Fluimucil (in Belgium) - if you can't find it under that name, look for another product that contains Acetylcysteine (a medication used to treat paracetamol overdose and to loosen thick mucus such as in cystic fibrosis or chronic obstructive pulmonary disease.) I'm sure there's similar stuff in the UK/US. It helped a little bit. Comes as powder or tablets.
I will ask the palliative care nurse about the fluilucil when I see her next . . Have af no adverse dude effects hiding the glycopperate . It did work but but hit or miss now
My husband was having choking episodes and a ghastly sounding chest.GP checked himbut no chest infections or temperature.The SALT team recomended Atropine drops under the tongue one 4 x daily to dry up secretions.What a difference,amazing x
Cabbagecottage, I use a thickener in his liquids. He has to have all other food ground up, and then he drinks it through a straw. They did a barium swallow and said he had some aspiration, however, that was about a year ago.
I am trying to stay pro active, but run into brick walls sometimes.
So difficult I know. What thickener are you using. We were first prescribed thick and easy but the dietician changed it to Nutilis. It's much nicer . Still no taste but easier to mix and spsoesnt drop to the bottom f not drunk straight away .
I have tried using the atropine drops and the Hyoscine patch which goes behind the ear but they causes awful hallucination more choking and confusion .
At present I am using glycopperate drops Its administered by syringe very easy to use .
If he is very bad I have Also tried using a mucus cough medicine to try and break it up for him
Definitely need to get a suction machine. I truly believe once a patient is diagnosed with PSP, they should have a suction machine made available. It has saved us countless trips to the hospital emergency room by having one on hand. For less than $500 US, you can get a really good one. And that's only a fraction of a single ER trip. We use ours every single day, especially after brushing teeth. My wife is now in her 7th of 8th year with PSP, but we've had one for at least 3 years.
Hi, I am new to this site. My son, 54 years old, was just DX with PSP. Originally DX in Jan of 2015 with PD. We live in Los Angeles, California, USA. You mention a GOOD suction machine. Would you please share the brand that you bought? It would be helpful. He has Kaiser Insurance under the ACA, and since he is on disability retirement, he does NOT have the employer supplemental insurance to cover any machines. thank you!!!
I gave mine away a few months ago after my wife passed to someone in our support group that needed one. But I believe it looked a lot like this one. Pretty sure this was the same brand. ventureresp.com/productcart...
Thierry is a cheaper model that only runs on AC current, but I would highly recommend the AC/DC, which makes it portable around the home and also while traveling
I saw a post today about one that Abirke posted that was supposedly super quiet. You might check that one out also.
Ketchupman......Thank you, thank you, thank you! I have not expected a response especially since your posting was over 6 months ago. I am VERY grateful.
In the morning I think my son does not have PSP (although DX on Jan 4, 2017, by a very reputable Neuro), but by the end of the day I know he has something far worst than PD. He can walk a little without a walker (bed to the toilet), very articulate, but he has taken to choking and spitting up after each meal, and having throat spasms, and that turns me around. He has had a bout with pneumonia and in his spit ups I find small pieces of food. He has seen the pulmonologist and is due to return in about 3-4 weeks. Thank you again!!!
How are his eyes? Most PSP patients have a lot of trouble keeping one or both eyes open. They're also more sensitive to light. And usually their voice starts to weaken to almost a whisper. I lead a support group here in Louisville, KY, and have several men in my group with PSP. One is in his late 50's and the others are in their 70's. My wife was only 54 when she passed and she probably had it for about 8 or 9 years. She was dx with PD in 2010 and then later dx with PSP in 2011. The doctor who determined she had PSP is Dr Irene Litvan. AWESOME doctor. She's written many books on PSP and conducts a lot of research. She enrolled Kim in one clinical trial while she was working at the University of Louisville. She later took a job with UC San Diego. I would highly recommend your son being seen/treated by her. And yes, it's good to have a relationship with a pulmonary doc. My wife eventually had a bad bout of pneumonia and that's what took her life.
Ketchupman, thank you for sharing that your wife was 54 when PSP took her. It helps me. It helps me a great deal.
My son's first symptoms of this journey was March, 2014. He woke up with DOUBLE VISION and slurred speech. Next came FATIGUE and ANXIETY. LOTS and lots and lots of tests by Kaiser Permanente. Soon, he developed sensitivity to light. He is single, never been married, has his own home. When I would visit him (10 minutes away) I would tell him, YOU LIVE LIKE A VAMPIRE" need to let some light in..........how insensitive, huh? I thought he was suffering from depression. Anxiety yes, Depression no!!!
My son has a BA from UCLA in Music and for 11 years supported himself playing gigs. He was a great bass player. Played well known gigs with well known artists . Through life's passages he got his CPA (passed the exam here in CAlif), and went on to UC BERKELEY, Boalt Hall, and got his Law Degree, passed the Bar. Hated the practice of law but never regretted the classwork. He ended up getting a Secondary Credential in Math, and that was his "day job". It enabled him to buy a home/house. His love of his life (never being equaled by the ladies that entered his life, staying around for 3-5 years only to realize marriage would not result) was MUSIC. That was his "nite gig". HE says he has NO regrets for the choices in his life. I believe him. He does not have Long Term Ins, nor a regular pension...not enough years. He does have DISABILITY RETIREMENT, and I help out...paying his ACA health insurance, etc.
We live in Los Angeles. San Diego is about a 5 hour drive.. on a good day....traffic is horrendous here. My son is not up to traveling...too much anxiety, and effort required.
We are NOT happy about the PSP DX, 3-5 years of life expectancy, but a life with little quality is not my son's goal. Prolonging it, with his present symptoms becoming worst, is not his goal.
We are both happy with the new neuro who DX him.....referred by his current Neuro.
Thank you. Your sharing has helped me, more than you know.
Life expectancy is usually 7-10 years. Is he already on disability? If not, sign him up right away, as PSP is almost an automatic approval. There is a 6 month waiting period before benefits start to kick in. And you have to wait another 2 years to become eligible for Medicare. But usually most don't have a lot of medical expenses until towards the end of the disease, and by that time, you usually qualify for hospice care, which covers 100% of everything. Most of Kim's expenses in the early years were from her many falls. So be sure is home is clear of any thing that could injure him should he fall. Get rid of all throw rugs. He needs to have a U-Step weighted walker as well. Much better than a traditional walker. And I hate to say it, but he really should not longer be driving. And he really needs to have someone there caring for him 24/7 as the disease progresses.
Glad you have a great doctor. God bless. Ketchupman
Hi Ketchupman.....He was given the 3-5 years expectancy, because it is generally 7 years from first symptoms (2014). He has DISABILITY RETIREMENT from CalStrs (calif teacher's retirement service). He has not applied for Social Security benefits. I do need to check that out.
He gave up driving February, 2016. I do all his driving.
I will check out Social Security, and get rid of throw rugs.
Currently I have a young male helper (21 years old) who my son enjoys, visa versa. He is only alone from getting into bed at night (8pm) until I arrive back the next morning (8AM). AS time goes by new decisions and plans will be implemented.
Time to research and visit agencies is my enemy. I have none.
I think you are an angel.
Need to run to get my son to take him to the Acupuncturist.
A bit of useless info really, but I have been told today that aspiration pneumonia only occurs on right side of lung because of way a body functions. Made sense at the time!
Bruce cannot cough any better than he can speak or swallow. He still is choking on his stupid Tamsilosin....I can't find this med in anything but capsule form...so he has to swallow.... But the suction machine, directed by him, can retrieve the caapsule from his throat if it suddenly finds a home in his esophagus! The suction machine is as much a necessary item in our home as the toilet....I can't imagine life without it ....yes I can but tha'ts a difft story!
Your guy may not have pneumonia even though he chokes...Though that is indeed how one gets it. If you haven't got a suction machine yet, get one! even with his meds to dry up saliva, Bruce needs that machine! Life sucks....
My husband P has PSP for the last 7 to 8 years. Lately he is choking a lot with mucus, not able to spit it out. So hard not being able to help. We are using Atropine 2 drops for excess saliva at night. What is the brand name of the suction machine you used. I had a tough time using the one Medicare gave, my husband disliked it very much , I had to return it. And it was difficult to clean as the nozzle got blocked often . I live in US. Thank you so much.
Our dear Andrea (abirke) passed away a year ago 💔.
If you look under the name of the person posting you will see how long ago that post was made. Andrea's was 3 years ago. We all do this when we are new! ..At least I did! Just thought it would be helpful to know why you (usually) wouldn’t get a reply to an old post 😉
abirke, I have ask our hospice team to bring me a suction machine. My guy is willing to try it. It breaks my heart when he gets into these coughing spells and cannot get it up. Thank you
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