confused ??

[gel68]

hello everyone, never really poates before but now feel i have to get some advice. my dad has vascular parkinsons, and when i came across this site i felt i was reading a text book on my dad. i hve convinced myself he has psp and almost convinced my family so here goes..... he has been bed and chair bound for 2 yrs now, hes recently been in hospital with aspirated pheumonia. he is also diabetic and had a hyp, turns out because he isnt eating he doesnt need insulin injections anymore. So he looks awfull, doesnt eat much, cant swallow, chokes alot and is now on pureed foods and thickened water. this time round at hospital i thought this was the end, i asked a sister what she thought, she said i could be right and that his skin is already showing signs of deterioration. anyway he is back home, still choking, cant speak and me and my brothers are beside ourselves feeling he just isnt getting the care he should be. even if he hasnt got psp, he is at the end in my opionion and we would like pallative care, spoe to DN and she said go to doctor with all my thought, another DN said no, pallative care is only for people close to death ( which isnt true) and chronic illness ( is this not chronic enough ?? ) so frustrated and sad :(......i just know hes going to get worse, i really dont know what to do........he has so many other things like pressure sores, has been catherised for last 2 yrs, incontinent both ways, just a mess...but we keep going, we love him, and im angry that he goes into hospital and i feel they know nothing, Twice now his notes have said addmitted with vascular dementia as well as vascular parkinsonism....we didnt know he had both??? its been bout 5 yrs now. any advice would be appreciated xx

[honjen43]

Not heard of vascular Parkinson's!

I so know how you feel!! Have been here! Ask for a neurologist consult and discuss PSP, CBD and all the related brain diseases that seem to be result of tau protein clumping. Sure someone else here will have more clinical knowhow than me.

You may be right in your gut feelings. I was but no-one listened either. Check how long you can have hospice respite and see if you can get some.

We all know the road is hard on this site. There will be someone who can help you.

Hugs! Jump up and down when you feel you have to!! Only way to make Dr s listen!

Jen

[NannaB]

Did your dad have brain scans before the diagnosis. I think vascular Parkinsonism is caused through mini strokes rather than the Tau build up in PSP but whatever your dad has, he needs the correct care. My husband was in a similar state to your dad, from what you describe, and he had a PEG fitted. Within 2 weeks his skin had improved and he has now put on weight and we are still able to go out. He wouldn't have been here now without it so if it is an option, it's a big decision. Do we prolong life or let nature take it's course. I couldn't see him suffer with the sores and starve to death and he agreed to it and I don't regret the decision as he is now comfortable. Has your dad ever been referred to a hospice? They are not only for people about to die but for all those with life limiting conditions. I think you need to speak to the GP and voice your concerns.

I hope you manage to get him the help he needs and my thoughts and prayers are with you as you see your dad in this distressing condition.

X

[vlh4444]

welcome to the site Gel68. It seems to me the first step is to get a proper diagnosis. The symptoms you describe certainly seem typical of PSP but, as Honjen says, there are a range of other neurological diseases which can present similarly. I am presuming you are in UK as you mention DNs.

What does your dad's GP say? Ask for an appointment and specifically mention PSP. If he is not familiar with it, give him the links for the PSPA information for professionals pspassociation.org.uk/for-p.... Ask for (no insist on) a referral to a good neurologist and say you need it fast tracked.

I also suggest you ring the PSPA helpline and ask their advice.

When you have a proper diagnosis it is so much easier to access more help. You will need (if you don't already have it) the help of a physio, occupational therapist, speech and language therapist, hospice, carer support organisation, advice about funding etc.

You may be right that your dad is near the end but, if he does have PSP and it is managed carefully, you and your family may be able to enjoy having him at home for a lot longer.

Everyone's experience is different but my own opinion is that, unless absolutely necessary, hospital is not a good place for PSP sufferers, so getting the right care at home or in a good nursing home is essential.

It can be a struggle getting the right people to listen to you but don't give up and keep posting.

Vicki x

[DoreenC]

My mum was diagnosed with vascular Parkinson's which turned out to be Psp. It was finally diagnosed by the neurologist about 18 months ago. My mum is near end of life now and she has list about 4 stone in the last 8 months. I would say demand to see a neurologist but it takes ages and your dad needs help now. We have been referred to a clinic who specialise in these illnesses and they have been great for us.

[easterncedar]

Your situation sounds awful, and I'm very sorry for it. I'm in the US, but I'd say you should forget the second nurse, and demand palliative and hospice care. It sounds very much as if you need help NOW making your father more comfortable. Neither he nor your family should have to suffer like this. I can't see what purpose a change in diagnosis would do at this point, except that if he is on medication for Parkinson's and he has psp it likely won't help and may cause harm, and that should be raised with his doctor. The first thing has to be getting comfort care. My thoughts are with you. Ec.

[abirke]

gel68, so sorry to hear o f the difficult times you are having. B was basically diagnosed by ME! At first I thought he was having mini-strokes, then someone said Parkinson's, then as I read about Parkinson's, I found PSP... We went to the nerologist He did a downward gaze test and basically confirmed my "diagnosis"....The dx has not changed since; B following the symptoms pretty cleanly...The diagnosis helped me to understand where to go from here or at least what to expect. I have to agree with easterncedar, At this point would change of diagnosis change anything, except to wean him off of useless drugs......I also have to agree with NannaB, He may really respond to a PeG or tube feeding. B lost 20 lbs in a few weeks when he started really choking on his food. He got a tube 7 months ago, and is doing much better. Like ec, I'm from the US so I can't tell you how to get medical help except to say you are your dads GREATEST ADVOCATE! Demand palliative care; to see a neurologist who is at least familiar with PSP; to get the things a PSP patient needs!

Good Luck keep us posted

AVB

[gel68]

Thank u all so much for ur replys I am definitely going to see his doctor. He didn't have parkinsons medications because they don't work on vascular parkinsonism. I don't think I will be able to get him out of the house to see a neurologist. That would be such hard work and he's not up for it health wise. But I'm determined to get the right care. Thank u all xx