Mum diagnosed with PSP yesterday

[Opope]

So my mum who is 83 was diagnosed by the Nuerologist yesterday with PSP. Mum was admitted 5 weeks ago to hospital with a chest infection which turned out to be Pneumonia. During her stay in hospital and contracting 2 hospital acquired infections (an infection in her right lung and e coli in her urine after a catheter was fitted) concerns were raised re her swallowing n so an NG tube was used to feed. After repeatedly pulling the tube out we have decided to risk feed. Mum is now on pureed food and is responding well to meds. We have a discharge and continued care meeting at the hospital today with the medical team and social worker.

So going back to PSP. Mum started having falls around 2009, at the time we thought she was just being clumsy. About 3 years ago we noticed her left arm was limp n she was using it less n less n that her speech was slower. Her GP was concerned enough thinking it was a stroke she was sent off to a falls clinic who then referred her to a memory clinic n Nuerologist. Mum was diagnosed with Vascular Dementia. Over the past 3 years her health has deteriorated rapidly. First her mobility, causing her to be wheelchair bound. She lost the sight in her left eye and had serious issues with bright lights often having to wear sunglasses inside. Mood swings were apparent, crying and laughing for no reason. Repeated tapping on her leg with her right hand. Forming habits. This last year has been the worst as mum became incontinent. She repeatedly had the urge to go and during the night was the worst. Dad was probably putting her on the commode 5times n she might use it once!!

Whilst mum has been in hospital she has had a number of tests carried out as the specialists realised there was more to her deterioration. We were concerned mum may have motor nuerone. Yesterday I met with one of the team who explained PSP and showed me scans of mums brain. She definitely has dementia. On top of that they believe she has PSP and it appears they may finally have positively diagnosed looking at mums symptoms. (Its almost like she's an advert for PSP ticking most of the symptoms)

The doc explained that PSP is generally misdiagnosed due to similiarities with other illnesses ie parkinsons. That its not till a number of symptoms show themselves that its properly diagnosed.

Mum is being trialed with Sinemet and they have just upped her dosage.

Mum can no longer speak apart from to say yes and no which we think she gets mixed up at times. She knows who we all are and knows wots going on as I explain everything to her.

Dad who is 80 has been her carer until now with our familys help. But we now have to make the decision on continued care.

Why isnt this illness advertised, I know our situation would not have been any different and mum would have deteriorated in the same way. But if we had known earlier it would have been easier to understand.

The Nuerologist wrote in mums notes 6 years life expectancy...which I have seen on other sites....my poor mum

I know this is a very long blog but I needed to get things off my chest and I think Im relieved to know and also in shock too. Thanks to anyone who reads and responds.

Can anyone tell me what to expect now?

[NannaB]

Hi, Welcome to this site but I am very sorry you have had cause to join. It's good you managed to find it so quickly after diagnosis. As to what to expect, everyone is different but as your mum already has many of the symptoms I think you can say she will gradually decline with the symptoms she has becoming more problematic. I'm concerned for your dad as well. At 80 he will need a great deal of support to keep him healthy. I'm 63. My husband has the same symptoms your mum has but doesn't have dementia and as other carers will tell you, it is exhausting mentally and physically looking after someone 24 hours a day, even with teams coming in to help morning and night. As he hasn't had her with him for several weeks, he has got out of the routine and it will be even more difficult for him to care for her at home. I hope you make the right decision as to what will happen next.

PSP is a horrible illness as you know, at whatever age you are diagnosed. I think you should look back at all the good things that have happened during your parents life and during retirement, talk to her about them to try and keep the memories alive. Many people on this site haven't reached, or have only just reach retirement at diagnosis and all the dreams they had will never be fulfilled. Some even have small children still.

It's going to be a hard road ahead for all of you. With dementia, eventually your mum may not realise what is going on in the future, which, although it sounds callous, may be a blessing. Many PSP sufferers will know everything that is going on, on the inside they are thinking the same but they can't communicate their thoughts in any way. When I speak to my husband and get no response, I ask him if he is talking to me inside and his thumb alway goes up, usually with eyes closed. He is 67.

Keep strong, support your dad and make his life as happy as possible. Seeing a partner slip away before your eyes is heart breaking.

Very best wishes and please keep posting.

Nanna B

[Opope in reply to NannaB]

Nanna B

Thank you so much for your reply.

I talk to mum all the time when I'm with her. Recently I had a chat with her about what is going on in her head it went like this..'mum I know that in your head the words are there but when they get to your mouth they are all jumbled up' she said 'yes' I tell her not to worry as we will be there always.

Ive said for a long time its like mum is trapped in a body that is slowly shutting down.

My dad was a very fit man until a few years ago....even though hes 80 he can still run for a bus gets around as good as someone half his age. But mums illness has taken its toll on him. He has finally admitted to us and the Social worker, who is amazing, that he has reached his limitation. He agrees that a nursing home would be best. The care package at home would have to be 2 carers 4 times a day plus night cover and dad wouldnt cope with that.

So at 2pm today we have the meeting at the hospital. Fingers x that all goes well.

I'm so glad to have found this site and again thank u for responding. I feel like I can breath again.

[NannaB in reply to Opope]

I'll be thinking of you all at 2 pm.

X

[NannaB in reply to Opope]

How did the meeting at the hospital go. Well I hope?

X

[Julieanne25arobinson]

I'm feeling your pain. My mum has recently been diagnosed after years of misdiagnosis. I to am fighting to get the correct care for her as like your Dad, mine was a full time carer, but sadly he is no longer well enough. I have 2 meetings tomorrow to discuss care and one next week to meet the chief executive of the hospital due to the very poor care my poor Mum has received.

We are all here for each other xx

[Opope in reply to Julieanne25arobinson]

Julienne

I feel ur pain. My dad was diagnosed at the latter part of last ur with type 2 diabetes and non Hodgkins Lymphoma!! We are trying to keep on top of things with dad especially his eating as he is so worried about mum he forgets about himself. His memory is also going so he is being checked at the local hospital to see if he might also be suffering with early dementia (it could also be the stress of looking after mum that has made him forgetful)

We had the meeting with the healthcare professionals on Thursday. Bathe Neurology Occ therapist and the Physio had never dealt with anyone with PSP although they had both heard of it.

Dad broke down in the meeting saying 'he didn't want to lose her' over and over again. I felt so so sorry for him, my mum, my family and myself.

We have decided as a family that a nursing home is the best thing. The hospital will do a continued care assessment, however they don't think mum will fit the criteria!!!!

Dad admitted he was burnt out and although Social Services would provide 2 carers 4 times a day he didn't think he could manage anymore.

I have noticed more and more when visiting mum her eyes are closed more and more even though she is awake. She has a build up of saliva that I didn't notice before.

I feel like I'm having the worst nightmare ever!!!

[Hidden]

My heart goes out to you and your mum and dad. My mum is 84, and was diagnosed nearly 5yrs ago (after years of mis-diagnosis). Mum is now at the 'locked-in' syndrome stage and has all the sypmtoms your mum has, except dementia, but no communication at all, is also peg fed and has to be hoisted. Mum is with continuing care and has two carers, four times a day, plus district nurses twice a day. We've had numerous A&E visits/paramedic & GP calls in the past two months! Dad, also 84, is mum's carer and as NannaB says it is physically and mentally exhausting, and it can also be a very lonely time for the main carer. Dad was actually diagnosed with exhaustion just before Christmas. It is a family decision that mum remain at home (although mainily my dad's) and my sister and I are heavily involved in mum's care too - ordering meds, contacting agencies, shopping etc., and generally making sure dad gets a break. My sister and I love our parents dearly but it also takes a heavy toll on us, especially as we both work/have families.

I believe it's important that you have as much information as you can, and know what to expect in the future, so that you can make an informed decision about your mum's care. I also think your dad has made a very brave decision about your mum going to a nursing home. At least when you see your mum it will be quality time spent with her.

Thinking of you all x

[Opope in reply to Hidden]

Thank you so much for your response. X

We had the meeting with the healthcare professionals on Thursday. The Neurology Occ therapist and the Physio had never dealt with anyone with PSP although they had both heard of it.

Dad broke down in the meeting saying 'he didn't want to lose her' over and over again. I felt so so sorry for him, my mum, my family and myself.

We have decided as a family that a nursing home is the best thing. The hospital will do a continued care assessment, however they don't think mum will fit the criteria!!!!

Dad admitted he was burnt out and although Social Services would provide 2 carers 4 times a day he didn't think he could manage anymore.

I have noticed more and more when visiting mum her eyes are closed more and more even though she is awake. She has a build up of saliva that I didn't notice before.

I feel like I'm having the worst nightmare ever

[Opope in reply to Hidden]

Thank you so much for your response. X

We had the meeting with the healthcare professionals on Thursday. The Neurology Occ therapist and the Physio had never dealt with anyone with PSP although they had both heard of it.

Dad broke down in the meeting saying 'he didn't want to lose her' over and over again. I felt so so sorry for him, my mum, my family and myself.

We have decided as a family that a nursing home is the best thing. The hospital will do a continued care assessment, however they don't think mum will fit the criteria!!!!

Dad admitted he was burnt out and although Social Services would provide 2 carers 4 times a day he didn't think he could manage anymore.

I have noticed more and more when visiting mum her eyes are closed more and more even though she is awake. She has a build up of saliva that I didn't notice before.

I feel like I'm having the worst nightmare ever

[jimandsharynp]

You will find that PSP is a unique disease in each patient. I found 34 symptoms of PSP that my dear wife never had and which others do have. There is also no way to know about the progression of PSP. There is no way to determine length of life, same for the rest of us. Email me at [e-mail] and I can share some very helpful internet sites you should have. I will also share my thoughts on "stages" of PSP and more. This offer is open to anyone who would like the information. I am here on this site to help as many people as possible. PSP is a terrible disease with no cure and no medications, except to treat SOME of the symptoms but not the disease. Hang in there. Be strong. You can do this!!! Jimbo

[nannygoon]

So sorry for your terrible ordeal my sister is81 has had PSP for 4/5 years now is in a nursing home. Like yourself it started with falls then anxiety and she was shuffling around. Her Doctor kept saying it was anxiety.! Then she went into a sheltered housing complex which was for in dependant living but got meals there and carers came in and washed and dressed her and there was a warden there till 9 pm but after that she would pull the emergency cord for all sorts of silly reasons or go knocking on other residents doors! Then she set her hair on fire with a cigarette and was rushed to hospital.That is when we pushed to get her assessed and got a scan done and Parkinson's plus was diagnosed then PSP.she is mostly unresponsive can' t walk or fed herself eyes closed most of the time she looks at you and holds your hand but it is just so sad I struggle to cope at times, but try everything to cheer her with music and nice hand cream massaging her hands and getting her nice things to wear. Hang on in there and you will get through it.

[Opope in reply to nannygoon]

I'm so sorry to hear about what you have gone through.

This illness is evil.

The forum has given me much needed peace and I'm so glad to have found it.

Today I plaited my mums hair and painted her nails dad sat holding her hand. She was particularly anXious I felt, calling out every few minutes. I've noticed she keeps her eyes closed more and more often which I now realise is another symptom.