Hi there. My dad was diagnosed last year and my sister and I are just trying to help him navigate this awful disease as much as we can.
He is still quite active and independent, but seems to have got worse over the last week or so quite rapidly.
He was getting agitated and upset and so I asked our neuroligist to prescribe an antidepressent, but he said he had a bad reaction to it immediately. It was setraline. Has anyone else's loved ones experienced immediate side affects from this.
He is also experiencing really excrutiating pain in his lower and upper back. Obviously with the fall risks he can't have anything other than paracetamol or ibuprofin. The ibuprofin has helped but it has been since taking it that his walking has detriorated dramatically.
Also has anyone been able to get access to PSP or Neuro Nurses that have been helpful. We are in the northwest of England. Our council is Cheshire East but his neurologist is at Salford and so the Parkinsons nurse at Cheshire East said they can't see him.
It's just so hard to know how to help him.
Sending lots of love to anyone dealing with PSP.
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mamamermaid1
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Have you contacted your local hospice? Mine are great for things like pain relief, Mum has pain patches which get changed every 7 days and paracetamol. Doesn’t stop the pain but when the patches wear out the pain gets worse.
My husband takes mirtazipan for anxiety. He’s been taking it for a long time but I remember it took a while for it to settle in. Possibly your dad needs to give sertraline a few weeks to see if it’s just adjustment.
My husband has a very low dosage opioid based patch he wears to numb pain as he gets spasms and stiffness that wake him up in the night. He can’t swallow pills anymore so the GP has just started him on this patch.
We have had brilliant support from our GP and we have a hospice nurse that has looked after us at home. I say us although it’s my husband with PSP but I find their support invaluable as a carer as always on the end of the phone with advice.
The PSPA charity is also fantastic and supportive and you can ring them for advice. They will have information they can give you for support in your area.
My GP has been able to help us with all the symptoms management. We made a point of asking early on for a regular Gp due to the progressive nature of the disease and got lucky. Our GP sees us every 4 weeks and does home visits as my husband is immobile.
We last saw a Neurologist 7 months ago for diagnosis purposes and have had very limited…2 phone calls from neuro nurse in that time. We had several appointments with neurologists prior to diagnosis but now I’m not sure what they can help with as my husband is in the advanced stages.
If I were you I’d phone the PSPA and also ask your GP for a referral to your local hospice. X
Sorry to hear about your dad it is awful trying to deal with this disease and how quickly things can change. My husband was mobile but within a week he has had a couple of falls and is now having to use his walker indoors now for stability. I am sure someone here can help with your medication question. My husband is on Madopar.
We have had 4 different neuro nurses and the current one fantastic. We see her every 6 months and can contact her with any questions. Through them we have had speech and physical therapy appointments and through them we were supplied with the walker. We are in oxfordshire.
Has your Dad had an assessment by Social Services? Everyone is entitled to one, and you should just be able to phone up for it. They can then get O.T.’s involved (who seem to deal with things that don’t move, like grab rails, toilet frames) & Physios (who deal with items that do, like walkers, sticks).
If your Dad is over State retirement age make sure he is getting Attendance Allowance, it’s not means tested.
Age Connect helped us, but I think they may just be in Wales.
Thank you so much. That's all really helpful. Yesterday I filled out the form for him to be assessed by social services. I am also looking into Attendance Allowance. He hasn't lived in the UK as he moved back when he started getting ill to qualify but will by next year.
Hello Mermaid1, its a bugger this disease PSP - so first Please Stay Positive!. So variable for us all. Ur Dad is maybe in his 70's! I am now 82, diagnosis 5 yrs ago, and still quite active and sociable ....there are 10 different types of PSP, all different progression. Seems I am on a slower burner that some. Since 5yrs I have put myself on Mediterranean veg diet, targeted exercise, supplements and some therapy. Lots of other advice and useful comments, 7 pages A4. If you like I will email it to you, but pls send me ur email address. Seems you sisters doing a famous job with Dad, and you will get support from others on this site. We are in Malvern with good support services and great understanding friends. Best of luck, and love to you. TimbowPSP
Hi Tim. What a lovely reply. It has really given me strength. Yes I must remind myself that he is still enjoying lots of parts of his life and we are able to laugh every day.
Dad does seem to be progressing differently as he is also very social still and active.
Hey who am I talking with? Seem to be getting replies from Mamamermaid, Leosta, and Eatom 7. My little brain is getting fried ..... what have I done to deserve this? Timbow
I live in Cheshire East and when my husband first needed a Parkinson’s nurse we were able to go to Stepping Hill where there is a very good Parkinson's Nurse and a consultant, they work in conjunction with Salford Royal which is where his PSP diagnosis was confirmed. His care continued with that area throughout his treatment, he passed away last year. It could be worth asking your GP to clarify the access to Stepping Hill/Salford.
Pity you weren't down this way with Dad last Sat. I had 82yr party at organic cafe outdoors locally in sun and biting wind. About 15 ppl came thro for coffee and snacks fro 11.30 to 2pm. He'd have enjoyed it? Mostly aged 40-80, and a a few walkers/and sticks between us! TimbowPSP
So sorry to hear about your Dad’s experience - PSP is such a complex health condition.
My husband who has PSP tried Sertraline for OCD-like symptoms when he was first diagnosed at the National Hospital for Neurology and Neurosurgery in London in 2018 (referred by our GP). He also tried Mirtazipine for sleep issues but reacted badly badly to both - with severe fatigue which affected balance and mobility - so he stopped after a month - it was too risky.
We have tried Co-codamol 30/500 for frequent falls-related pain management - but this had a negative effect on fatigue levels and cognitive function so he is currently using Ibuprofen gel 10% prescribed by our GP and this appears to be effective. I have requested a pain management medication review with our GP this week.
We are in Cheshire West and get SLT and community neuro-physio support from the local community and hospital teams who are very good and attend St Paul’s Eye Unit in Liverpool (Neuro-Ophthalmology) - the orthoptists there are brilliant!
We don’t get any local specialist nurse support - this aspect is one missing link in my husband’s healthcare but do get telephone support from the cognitive disorders specialist nurses in London. They have referred me to their clinical psychologist team for targetted mental health support as the effect of 24/7 caring over 6/7 years inevitably has taken its toll. It might be worth speaking to your current medical team to see what else could be available - when you start asking more questions it’s surprising what you find is available - that has been my experience.
Our local hospice has been incredibly supportive and my husband has regular appointments with their consultant palliative care doctor and attends various activities there and I have had extensive pre-bereavement counselling.
It might be worth a review with your GP about your Dad’s care to get access to the support he needs - I echo the post about getting a referral to your local hospice - who, amongst many other things, are pain management specialists.
Thank you so much, Cinephile for taking the time to write such a detailed reply. I have hesitated to reach out but I'm so glad that I have because everyone has already been extremely helpful.
It sounds like your husband and my dad are quite similar when it comes to medication sensitivity. I started him yesterday on a comnination of ibuprofen and paracetamol and it is easing the terrible stiffness and pain but he does seem so much less clear cognitively and his gait is suffereing. It's such a hard balance to strike.
I will look into the gel and the patches. Spoke with the social worker today and she said as you said we need to have an appointment with the GP to go over his care as I feel we are not being supported.
I have also left a message for the neuro nurse today at Macclesfield hospital who are connected to the CFU unit at Salford Royal to see if they can help.
my husband was in the same position, luckily he was referred to the Walton Centre, they are fabulous, perhaps ask to be sent there, does your Gp practice have a specialist” elderly “ nurse who can help.The specialist nurse came to our local hospital - Ormskirk, & now does a home visit
Ruth has been on Sertraline for many years now - 50mg initially in the morning but now 200mg as her mood has worsened. No side effects - generally seems really to have helped alot. But different reactions for different people. I think she tried Floroxetine and Citalopram before and did not like them particularly....
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