My dad is having problems with choking...I feel some liquid had got in his lungs..can clearly hear the glurrryyy noise from his chest.

[kewlo]

He's trying to cough it out...but in vain...frankly he's 1 of not-wanting-to-live-life types...I get hardly any support from him wyl doing his job. Observed that he keeps his mouth open wyl asleep...and coughs terribly all night.

[Hidden]

I cannot see any previous blogs to assess the total condition of your dad. I'll assume he has PSP or similar. So sorry to hear about his aspiration problems. You may already know this, but aspiration pneumonia is one of the greatest risks of PSP (and other similar diseases). Do you have a health professional assess your dad's chest, temperature and blood pressure etc on regular basis (at least once a week)? If you can hear a sound in his chest without a stethoscope, then he may have aspirated fluid into his lungs. This does not always mean he will get pneumonia, but the likelihood is high if he is immobile.

He's showing some typical symptoms associated with PSP, with nightly coughing and aspirating saliva and fluids.

You certainly need more support, and while your dad may not have an motivation to carry on, he really need a visit to an emergency department or a visit from his GP. I'm in Oz and I'm not sure if you are in the UK, but I'm sure others on this forum will advise about how you can obtain more assistance.

I do wish you all the best, and hope you find some help for your dad very soon.

[kewlo]

Hi Strelley, thank you so very much for your response on this. Much appreciate.

Yes my dad has been diagnosed with PSP. We r based in India..we get him a regular professional check-up done for his overall health and the next visit is scheduled on the 25th of this month. None-the-less...the most fearing part is that this disease is actually progressive...he was diagnosed with PSP only last year and the symptoms are really aggressively progressive. Just hoping to help my dad as much as possible.

Thanks again.

[Pram in reply to kewlo]

Hi,

Whereabouts in India are you ? I am also based in India and my husband is suffering from PSP / CBD...he was diagnosed in late 2011.

Thanks again.

[kewlo in reply to Pram]

Yes in India Pram....in Bhubaneswar and have taken him to diff places to get him checked...he is been diagnosed with PSP from year and its really progressive in his case.

[jillannf6]

hi

itoo have PSP DXD DEC 2010 and am sill here upright most o f hte time

(i must havethe slow sort of it)

i tend to choke a tnigh - twake up abotu 2 or 4 am and cannot get my breath for about an hour - choking and coughign

difficult ot know what tod do about it

i get up as i am still npbile enough to do that then when the coughing has stopped go back ot bed (after a toilet stop en route!)

[jillannf6]

hi i forgot to sign out

lol JIll

[cabbagecottage]

My husband has been told he has Parkinson's but only mild . He has been taking SINEMET for 7 yrs and they don't seem to have eloped at all in fact about an hour after taking one he seems to switch and become worse . I have my doubts that it is Parkinson's and maybe something like PSP . Do any of you still take any Parkinson's mess even though diagnosed with Psp

[NannaB in reply to cabbagecottage]

My hubby has PSP and has been on Sinemet plus 3 times a day and half sinemet at night. I'm not sure what good they do but don't seem to have any noticable bad effect. He was never diagnosed with Parkinsons but put on Sinemet when PSP was diagnosed in 2010.

My husband also chokes when he first gets into bed but I noticed this as a symptom before he was diagnosed and on Sinemet. Like daughtemo1, I've raised the pillows and use a protector.

It's very scarey when they do choke isn't it?

Best wishes.

Nanna B

[Hidden in reply to NannaB]

Just a reminder that Sinemet (dopamine type medication) when given to a (classical or RS type) PSP diagnosed sufferer will have either no effect or only a short term effect (several months, but rarely past a year or two). Neurologists use this information as a tool for distinguishing Parkinson's disease from PSP.

If the person has been suggested by a neurologist of having PSP-Parkinson's then Sinemet will usually have some benefit initially, but again wears off with time.

Sinemet should not be withdrawn abrubtly because of resulting side effects.

People with Parkinson's itself mostly have good benefit from Sinemet, but long term use often presents problems. They are often treated with dopamine agonist drugs nowadays (these medications act on the dopamine receptors)

[jimandsharynp in reply to cabbagecottage]

Cabbagecottage, My wife is still on Sinemet. We have tried taking her slowly off it because we didn't think it was helping. However, last time we did that she went downhill until back on it. I've heard that being on Sinemet long term can cause the drug to have adverse affects. Don't know if it's true or the approximate length of time before problems can come up. I think I read that Diskinesia, which Sinemet is used to stop, can actually begin due to use of the drug. Perhaps others can speak about this.

Jimbo

[firo in reply to jimandsharynp]

hi Jimbo

My dad is on stalevo ( a dopamine drug) for about 3 years as he was first diagnosed as parkinson disease before being diagnosed as psp last year and he hates this drug and he thinks it is making him worse as his condition is progressing plus I read about its side effects which is terrifying but i made a couple of trials to gradually stopping it and his condition just became so bad, so he is back on it and no more trials to stop. When he is taking it you don't really feel it helps but without it he can't walk the few steps that he can do. when he first took it I think it controlled that choking problem too but not anymore, this problem is the most serious one that he faces, it is happening so frequent now and lasts for long time and seems unpreventable. I hope there is something to be done for this choking

wish you all the best

firo

[Pram in reply to cabbagecottage]

My husband was put on sinemet in 2010. After the diagnosis of PSP in late 2011 we contd with it. He takes it till date. What I have seen is if he doesn't take it, his movements become very , very slow. So that is the reason we have contd with it. He takes one tab as soon as he wakes up around 7 am... Then 130 pm and a half tablet before going to bed at night.

[cabbagecottage]

He also has the choking episodes generally when he first gets into bed and sleeps with open mouth all night , he does gurgle and crackle but whenever they check him they tell me it's clear . could the SINEMET be causing him more trouble than help

[JudyJ in reply to cabbagecottage]

A couple of thing really jumped out at me in your post. Has he been tested for sleep apnea? If not please message me; could be important. Have spent my spring months to the present enduring this/undergoing testing with surprising results. Don't want to bore the regular bloggers with my usual wordiness. Feel free to message, tho.

Judy J

[Hidden]

You will find that some of your dad's apathy is also combined with loss of strength in all muscles. Mum was really willing but with all her might she still struggled to cough. Before she was diagnosed and was seemiingly well in herself she several times complained of 'not being able to cough' and it seemed a strange thing to say at the time and we put it down to the fact that she actually didn't 'have a cough' so we told her not to worry. But with hindsight we realised it was the beginning of her loss of muscle strength in that area.My point is that even when they are desperate to'get better' as my mum always was it is an uphill struggle. Mum began to sleep with her mouth open too. She was not able to turn very well but fortunately she preferred to sleep on her side so it just meant changing her pillow cases more often and using protectors. A slight uphill position on pillow should help to drain things more naturally if he sleeps on his back.He may find it a bit different at first but will soon get used to it and may appreciate having less disturbed sleep.

Good luck and do post on this site if we can help to give you practical solutions, we don't all give long medical jargon so don't be put off from asking.

Take care,

[kewlo in reply to Hidden]

Completely agree with you. A increase in height of pillow has definitely helped. My dad has been a strong man...but yes of course muscle weakness is the thing of cause (as doc mentioned nucleus palsy)....but the best part is he's picking it up....now the progression has reduced....I've been constantly observing him and he has not fell even a single time....that's the core cause of his betterment....with a recent ct scan report we got to know that the size of 3rd ventrical has increased(ballooned)...called as hydrocephalus. Doc is suggesting to get a surgery done by installing a VP shunt. Can any 1 suggest pls.

[Hidden in reply to kewlo]

Just read your recent blog. It sounds like your dad has Normal Pressure Hydrocephalus (NPH) rather than PSP. This produces very similar symptoms to PSP (that is, Parkinson like symptoms with walking and balance difficulties). There are cognitive problems (dementia) and incontinence. It does depend on what areas the fluid(CSF) are pressing against in the brain and are damaging.

If he has NPH there is some good news- it's treatable as you mention with a VP shunt (that takes the excess fluid from the brain to the peritoneum area where it is absorbed. If caught early, many of the symptoms lessen and in some cases disappear.

So the next step is to see if he really has PSP or if the NPH has given a false diagnosis.

Hope to hear the outcome and all the best.

[kewlo in reply to Hidden]

Hi Strelley,

Thank u again for the response...on top a very +ve 1. We have connected with few specialist doctors(3 of them). The local doc has his own views and he believes that its NPH and as u mentioned....but surgery procedure seems to be little complicated as the doc mentioned. So we are little confused as-in when and where to get this surgery done...hopefully we should have an answer soon...pls do suggest further more info on this. Its a very early stage according to the docs and they asked us to keep them updated on his progression which has improved from past couple of days.

Best,

[Hidden in reply to kewlo]

The fact that there's been noticeable improvement (depending on what you mean by improvement) in the last couple of days does not indicate a PSP type situation.

I'm sure your doctors will fully explain the next steps now that they have seen the third ventricle dilated (and may interpret it as a different type of hydrocephalus if only one ventricle is involved).

Irrespective of this, if they suspect NPH then I think the usual course of action is to remove CSF fluid by lumbar puncture (drain off for a couple of days) and see what response occurs when the ventricle has less fluid inside. After this, if symptoms improve they would decide to put in a VP shunt.

[kewlo in reply to Hidden]

Hi Strelley,

At last we got little confident about the fuether steps to be taken, and as u mentioned its a NPH and the course of action is exactly the same as u mentioned...thanks a lot again. On top he has been recommended for a complete good course of physiotherapy now...hoping some cure.

The CSF tap-test is scheduled today and as you mentioned earlier.....I hope him to be completely cured.

[Hidden in reply to kewlo]

This all sounds like excellent news, so I wish your father well, and trust he has a good recovery.

All the best for now.

[easterncedar in reply to Hidden]

Strelley, you have left the site?

[cabbagecottage]

Thank you for all the replies and helpful advice . He already uses a rise and recline bed , I am just about to get some help to get him to bed . I can manage everything myself but because he cannot turn backwards very well we don have some hairy moments .

I have just got use to it I take it a step at a time and have learned what works for him .

Ia do raise the head for him it is usually the first hour once he has cleared some of it he is more settled . He uses a night bag which has been a boon in saving getting in and out . also if I go out for a few hours .

Even before he was diagnosed if he happened to have a cough we all use to make fun and tell him " for goodness sake have a good old cough " of course we didn't know why he was like it . The same when he was eating I use to tell him not to pick at it . neither of us realised what was happening .

[peterjones]

hi cabbhage cottage just a thought mate what time do you have your even\ing meal !!!! perhaps

he is going to bed to soon after eating or drinking \\\\\ you should wait at least 30 mins to 1 hour before you lay down after having anything to eat or drink because of choking problems if you are having meals late and he is laying down i would suggest that you tell him not to ]]\\ this might help stop the coughing and choking hes having trouble with or try have your meals bit earlier \\ i would not mind a curry right now myself but not to hot though\\psp sufferer peter jones queendsland australia

[Hidden]

cabbagecottage, I was also thinking that milky drinks and things like yoghurts and custard can leave the best of us a little 'phlegmy' afterwards so make sure you don't give things like this too close to going to bed. I know what you mean about saying things when you didn't realise what their illness involved- I thought mum was deliberately lingering over her meals to keep me with her longer and although I didn't mind, I did keep egging her on when she took forever licking her lips and teeth in between mouthfuls and it was only later when she couldn't do that anymore that I realised it had been a difficult thing for her to do at the time.As she wasn't able to tell me how would I know, so I try not to beat myself up about it but every now and then I get a flashback about things like that.

[cabbagecottage]

He rarely eats after 6pm and then only a small sandwich , mostly drinks water , sometimes a add some lemonade . He mostly uses a non return straw to drink with .

I try not to beat myself up when I think back but can't help it sometimes . This illness doesn't happen overnight does it and neither of us had an inkling that there was anything wrong .

Thinking back we both were struggling on a number of holidays it be me a joke that whenever we came across a bench he would sit down , found standing in a queue he wood be terribly I though was Impatient or stopping to speak to someone .. It would have been better to stay at home .

He wasn't diagnose until he was 70 so had really been struggling for many years . His brother who is 8 years his senior also has Parkinson's but he isn't quite as bad .

[firo in reply to cabbagecottage]

Hi cabbagegecottage

my dad wasn't diagnosed for years until we knew what's going on, and thinking back psp explained what we didn't understand then of him being rapidly getting tired stopping to walk although he liked it, asking us to give him a ride to a very small distance while he used to walk before for much more distances, having problems in handwriting and his signature, inability to use the computer, changing in the mood that we thought it is depression but we were told then it is apathy more than depression getting nervous more than usual, all these symptoms and more he never talked about he kept just saying that he feels tired. In fact i do blame my self now because i didn't realize what he is suffering and sometimes thought he just wants more attentions from surroundings while it was psp going on and progressing.

Wish you all the best, take care

firo

[cabbagecottage]

Unfortunately we are all mostly left to rely on sites such as this one . Out care of the elderly doctor who also takes care of the Parkinson's clinic retired at Xmas and our very supportive GO has also moved away so we feel in limbo .

They are so tunnelled visioned about the treatment nd don't ever seem to think it could be anything else . For a long time I have wondered if it were something different to Parkinson's when I rad so much of what others have been diagnosed .