Chesty cough/flemmy

My hubbi has just been diagnosed with psp hes just 38yrs old and has most symptoms,coughing and bringing up phlegm we are trying pineapple juice at the mo but getting agencies involved seems to be a minefield and very slow anyone else found this

[Keith246rk5]

You know you've got our support 😎👍

[Hidden in reply to Keith246rk5]

I know, thankyou so muck x x

[jzygirl]

I think it was about 4-6 weeks after diognoses that we saw anyone but once we was seen by the neuro physio she referred us to all the other department and now our appointment book is full. Take heart and push. Janexx

[Hidden in reply to jzygirl]

Thankyou,so many battles at mo, work havnt been great allowed me to take a week annual leave before a week already booked / two weeks altogether,no compationate leave, still so much to sort,got union in to push for more paid leave, last week,still waiting on that x

[snapper]

Hi Where are you in the world? my wife has PSP and we live in the East Midlands Uk. Support differs in each country.

[Hidden in reply to snapper]

We are west midlands,but i guess due to lack of knowledge from doctor it all takes time for them to come up to speed, back to doctors tomorrow,sent us away for two weeks so he could reseaech it x

[snapper in reply to snapper]

Hi Lisa

Firstly I am really sorry to hear that someone of your rage has to cope with PSP. I just hope that you get lots of help and assistance and that things will get a little better shortly.

When my wife was first diagnosed with PSP our local GP's surgery had never been faced with this problem before. The best thing we have done is to get one of the doctors to become our point of contact and at least we are now not having to explain each time we visit the surgery all of the symptoms to someone who has never heard of PSP. The support we receive now is infinitely better with a nominated Dr being our point of contact.

I am sure that this will happen via the professionals but initially the most help we received was from the speech and language therapist, the nutritionist and the occupational therapist(helps prevent falls)

This forum is immensely helpful in as much as you can access a huge amount of knowledge from many people around the world, in the future I would suggest you identify specific problems and outline them on the forum and I am sure you will get lots of replies and helpful suggestions.

Don't lose hope there will be some good times as well as all the difficult ones.

[GillJan]

Lisa, sorry to hear your husband has been diagnosed so young. Can I pass onto you information I was given by the Swallow, Speech and Therapy clinic - they have told us not to use pineapple in any form as even when blitzed it is considered one of the top food items to avoid if choking is likely to be involved. Bread is the top food to avoid as it goes claggy in the mouth and difficult to swallow and causes choking. You say you are in the Midlands, if you haven't done so already, on the home page of the PSP site there is a telephone number to call to find out who is your regional PSP Specialist Care Advisor. I can only say that finding ours for the South West has been not only the biggest bonus to our lives but a true godsend. Once I had spoken to the lady, we were alloted a Parkinson's Nurse for contact and so many other services that at first it was like drowning in too much help. Several services have visited, we have the additional aids we need, a lady from Parkinsons contacted us and sorted out all the benefits we were entitled to and told me how to go about getting things like a Blue Badge and Radar key for disabled toilets. Our GP had heard of PSP but was not 100% up to date, however she is now and she calls me once a month (if I haven't had to call her first) to make sure things are ok - just after Christmas I reached rock bottom trying to be all things to all people and made myself very unwell, so she won't let that happen again!! I do hope you get any help you want and wish you both well.

[Hidden]

Thankyou,yes have psp association on board, still waiting for a parkinsons nurse, feels like a lifetime waiting, facing the prospect of sorting wills and power of attorney is horendous seems like your dealing with the trauma of everything and fighting so many battles then forced back to work as have no choice, the whole world ripped from under your feet and have no control, having to send his car back on finance, keeping mine and the thought of struggling financially when we were ok, struggling to cope x x

[Kolton]

So sorry for yu. Yu are at the rite site People here will help steer yu. Where yu live will determine what yu can get All countries so different

[erin]

I think you will find that your Union will provide a service to advise you on finance and benefits. A lovely man from Parkinson's did it for us.

Unions are very good at that sort of thing.

The speech and language therapists will help with drinking, speech, eating, even how to cough 'productively' they are referred to as SALT.

X

[Hidden]

Thankyou erin, i think im just paniking a bit too much x x

[jimandsharynp]

Suggestion: Avoid milk based products. They tend to thicken saliva and thus make swallowing an issue. IMHO Jimbo

[Hidden]

Thankyou all for your advice x