Parkinson's nurse Info needed

[Loveispatient23]

Hi all, firstly I would like to say thank you for all the posts that have been shared on this forum regarding PSP. They have been so helpful in trying to navigate through this awful degenerative disease which a lot of health professionals are not up to speed about. I have been doing a lot of my own research before intitial diagnosis.

My Father-in-law (87) has been diagnosed with PSP about 5 weeks ago.

The PSP Asssociation has been absolutely amazing and told us more essential information/benefit entitlements in an hours phone call than any health professional ever has.

This journey all started about 3-4 years ago when he was having small falls leading to bigger falls as the months went on. As a family we kept pushing for the GP/Hospital to take our concerns seriously as there were certain things we noticed like falling backwards, vacant look in his face, speech altered, fatigue, no energy, change of mood etc.

A few days before his diagnosis he had a very serious fall resulting in stitches in his head and a severely swollen eye socket. Since then he seems to have gotten worse. Carers have been in 2-3 times a day (part of the care package from the hospital). Initially told 6 weeks free care but the social worker said up to 6 weeks!

We are now in the process of handing over to another care agency who start next week. We have researched a lot of information/CQC to find the right one. My Mother in law (85) and Father-in-law are very adamant in not having any more care but we have reiterated so many times how important it is so they can continue to live in their own home for as long as possible. My mother-in-law is in denial about all of this which has been hard work in itself. Trying to explain that things are going to get a lot worse is a lot to take in for all of us but we just want to make sure all things that can be put in place are done as from what we have read things can accelerate at a fast pace.

If you are still reading this (I'm sorry for the long intro),I would like to ask how long does it take for the Parkinson nurse to make contact? We know the letter has been copied to them but have not heard anything as yet.

We have the SALT team coming this week and desperately need advice on a soft diet as my father-in-law chokes a lot when eating and drinking. We have bought some cups, plates etc which we have researched to help make eating/drinking easier.

My husband and I are constantly on hand to help with most things especially financial, medicine supplies etc and Power of Attornerys have been set up for a while.

There is no doubt that this journey is going to be a tough one for all concerned. We have a young family ourselves and are trying to do the best we can.

Thank you so much for your time.

[Millidog]

Hi, I am sorry you have PSP in your family and have had to join this group but I'm sure you'll get lots of help. I believe support such as Parkinsons nurse availability varies by area. We are in West Dorset and our neurologist referred to Parkinsons who we saw only once and seemed completely disinterested and of no help but I hope its different in your area. I would contact either the neurologist who diagnosed or your gp to chase, in fact chase and push for everything you need it works. I wouldn't just relay on Parkinsons nurse, do also get your gp to refer to physio and OT they can be extremely helpful in looking at exercises, providing walkers, wheelchair referrallooking at home adaptations and equipment such as stand aids, rise recline chairs, hospital bed The good ones will help you by providing equipment before you need it which is so beneficial as things can change quickly. Also research what other support maybe in your area eg any charities that may be able to help. We don't have this in our area but others on this site have mentioned Sue Ryder, Macmillan, Marie Curie, also ask gp if hospice support as this isn't just for end of life. Again we don't have this but do have a neuro nurse that has a link to our neurologist who I suppose provides support that a Parkinsons nurse might in other regions. Also look up social perscribing via yoyr gp and carers organisations in your area and contact them, again unfortunately it can vary by region so we all get different support but through them you can sometimes get info and access to carer support eg counselling, respite which will be helpful for your mil or links to activities and day centres for the person with PSP and provide info on benefits such as attendance allowance, blue badge etc. Not quite the answer specifically about Parkinsons nurse but hope some of this info helps. I would advise spreading wide to get help and support from as many of the different medical professionals and organisations as you can and each one you meet ask what other support they can link you to. It all seems very disjointed and it is but the more you push the more help you get and having all these involved in fathers care can be extremely helpful in getting advise on timing, involvement and support in future chc care funding applications take care Millidog

[Loveispatient23 in reply to Millidog]

Thanks so much for all that information Millidog, very helpful and informative.

[Millidog in reply to Loveispatient23]

Hi again, just a thought it may be worth adding to you post with your location - county or city/Town. Services and support vary so much and there may be others in your area who xan offer insight into specific local organisations or how services such as OT, physio etc work in yoyr area xx

[Loveispatient23 in reply to Millidog]

Thanks Millidog, I will do that. I am a newbie to this. I have been reading conversations on here for a little while now, trying to gain more knowledge.

[DadsBarmy in reply to Millidog]

I apologise for the delay in responding to your very thorough and detailed email but I have just left hospital this afternoon with a care package in place.I’m in N Dorset and have a hospital bed and wet room/loo on the ground floor of our cottage. I have been in hospital from last last September! My PSP has not improved since I got into hospital!

I’m sorry to hear that you are not so well served in West Dorset as we seem to be in N Dorset .

Thank you for your advice. I do appreciate it.

Regards

DadsBarmy

[Zerachiel]

Hi, excuse the copy and paste but a recent reply I made to someone else may be relevant to you, Hooe it helps.

"Hi, this is a link to an NHS food thickness guide

southtees.nhs.uk/services/a...

I would advise asking for a referral to a dietician, in the mean time you could look at fortifying foods, a quick guide is here malnutritiontaskforce.org.u...

Try using a small spoon to avoid cramming, ensure each spoonful is swallowed, avoid mixing consistencies in the mouth eg. Peas and gravy.

There are three main issues with PSP and swallowing, 1 the swallow itself is strong but making it happen is difficult, 2 the swallow is weak, both of these run the risk of aspiration. 3 the muscles controlling the mouth and tongue are not working well, this could mean not being able to manouver the food under the teeth to chew or to the back of the mouth to swallow

[Loveispatient23 in reply to Zerachiel]

Thanks Zerachiel for the helpful information, I will take a look.

[Willowden]

Sorry to hear your father in law has had this recent diagnosis.

Mum got her diagnosis just before Covid lockdown and it was 7 months before we saw the Parkinsons nurse. And I remember chasing that up several times. She was very helpful when mum was still at home with referrals and particularly helping us with advance care plans and guiding us through those very difficult conversations. As time moved on, the district nurse was more useful as she came weekly.

Now the Parkinsons nurse is available by phone when needed but I find the Speech and language therapist and GP provide the most support. Mum is now at an advanced stage.

As mentioned above , I think services can depend on your area. Good luck and keep pushing. You will find which people can support you on this journey. I found knowing someone was contactable if I needed them was sometimes enough.

[Loveispatient23 in reply to Willowden]

Thanks for the support and information Willowden. I will definitely be chasing up the Parkinsons Nurse. Before all this I never liked to bother anyone but I must admit that I have been very vocal of late which is a necessity especially at the moment with the way things are.

[David750]

When we were referred to the Parkinsons unit they did not contact us so I contacted them. They are these days inundated with work, so delays in communication are understandable. Give them a ring or email to prompt.

[Loveispatient23 in reply to David750]

Thank you David750 I will get in touch to give them a prompt in the right direction.

[Kelmisty]

Every county has a different set up as far I am aware, but in Kent they have a community neurological team who all work together. Parkinsons nurse, neuro OT, physio, speech and language team.

Before we met the Parkinson nurse, I asked the GP to make a referral to all services, also the neurologist did too. It wasn’t long for us to see all the services - weeks rather than months. But it does depend on the volume of referrals and how many there is in the service.

It also depends on how far in the illness they think you are.

Our local hospice supports us as well, the gp had to make a referral but they help me with any emotional support and practical support e.g. medication for pain relief etc.

[Loveispatient23 in reply to Kelmisty]

Thank you Kelmisty for the useful information.

[45purple]

Morning sorry to hear about your father in law being diagnosed with this awful illness. Here in the Scottish Borders when we got Karol’s diagnosis we met the Parkinson’s nurse then and she gave us her email and contact number to get in touch if we needed. But I think you will get more information in this group or PSPA / CBD sight. I have had to accept help about 1 month ago as I had been doing it myself for a year and took carers stress in September when my husband was admitted to hospital with aspirated pneumonia. I personally struggle to admit I needed help but if you can take anything you can get. Even get in touch with Social Work for help they will access what your father- law needs. Good luck 💜

[Loveispatient23 in reply to 45purple]

Thank you 45purple. I must admit I have gained a lot more knowledge on here and the PSP Association in recent months. I'm glad you have finally accepted some help even though it was hard to come to terms with.

[Purrlie]

So sorry that you and your family are dealing with this horrid disease, but such a good thing you have found HealthUnlocked and the PSPA. One thing that helped us regarding outside care for my father-in-law (not PSP for him, but needed increasing amount of care to stay at home) when he was completely bed-ridden and resisting any assistance but ours, was to explain that WE needed the extra help, that more outside care would help us keep him at home as long as it was safe, that he would be doing us a favour by letting others come in to help. That perspective really helped him keep his pride and be more accepting. Perhaps this might work a little on softening your in-laws' resistance? All best wishes, Purrlie

[Loveispatient23 in reply to Purrlie]

Thank you Purrlie, I can see why this perspective would help in this situation. My Father and Mother-in-law come from a generation that would be too proud to ask for help, but I am hoping that they are coming around to this ideal. Anything to help keep them both together for a longer period.

[Walking18]

Firstly sorry you find yourself in this situation reading your story brings back so many similarities from my own journey and my mums who had PSP( she passed away 27th Oct but I’m still part of this group hoping I can help others)

This group and PSPA were the best for information and understanding.

We had SALT involved once she was discharged from hospital after diagnosis but had to chase for a Parkinson’s nurse to make contact ( to be honest when she did she wasn’t much help we saw her twice in the 2 years mum had the diagnosis.

Mum lived in a ground floor appartment on her own since my dad died in 2020( who I hd also nursed) she had carers going in 3 times a day but would let them do the bare minimum and once they left would ring me to go and do things. Eventually the falls became too often and it was becoming too dangerous for her to be there on her own so after yet another admission with a head injury the lovey doctor looking after her pulled me I for a long chat about the decline and looking at 24/7 care.

Her mobility went not long after she was moved into a care home, then her speech and choking became more frequent she was moved to thickened fluids and puréed diet until week before she died when she kept aspirating. The decision was made to keep her comfortable at the home where she was settled. She lasted exactly a week and during that time slept a lot but was so comfortable, she had the most peaceful passing which knowing how cruel this disease is I was grateful for.

Don’t rely too much on the medical professionals for help make use of this group and PSPA and also as your dad declines look at CHC funding to help with his care

Hope this helps a bit

[Loveispatient23 in reply to Walking18]

Hello Walking18, firstly, I am so sorry about your mom. Thank you for still being part of this group, it is so brave and courageous of you to share your experiences. This is indeed a truly awful disease and it is so hard to see our loved ones being taken away day by day. As you so rightly say there are so many helpful and supportive people sharing their stories who know so much more than the medical professionals. Take care and God Bless.

[45purple]

Sorry to hear about your farther-in-laws diagnosis. We met the Parkinson nurse the day Karol got his diagnosis of CBD. I would get in touch with the Neurologist again or ask your local doctor how to make contact with them. Good luck 💜

[Loveispatient23 in reply to 45purple]

Hello 45purple. Thank you for the information.

[Cake_lover]

Hi, I am a PSP patient and have just received an appointment for a nurse in mid January. My diagnosis was in September, when the referral was made and I live in Worcestershire.

[Loveispatient23]

Hello Cake-lover so sorry that you are on your own personal PSP journey. Thank you for that information, I wish you well for your appointment. Let's hope we hear something soon.