Introduction to PSP

[Danish21]

Hi, as you will see, from reading my profile, my wife has been diagnosed with PSP on Friday last and just now we are both wondering what happens now, and where we go for some practical help. at this stage any suggestions could be helpful, I have an open mind.

[Millidog]

Hi, welcome to the club that no-one wants to join but is invaluable in providing lots of useful help and support. Here are a few things that might help:1. Contact the PSP helpline, they will give you lots of advice and info on who to contact. They also have lots of info on their website that's worth reading.

2. Contact gp surgery to register as carer and to build a relationship for future help, advice and support,and through them identify any support in your area, eg social perscribing who can direct to worthwhile local group activities.

3 . Get referrals from neurologist or gp for OT, physio, SALT, eye hospital who can help with symptom management, equipment and home adaptations

4 think about home adaptations eg level access living, wet room, wet and dry loo, hand rails etc early / before you need them. In addition things like walking sticks/poles, loo frame and raised seat, walker, bed grab rails. One day you don't need the next you do so being prepared helps. Our best friend in this is our OT and through her we have been able to source equipment as mentioned as needs changed and now additionally have neuro walker hospital bed, stand and sit aid, raiser chair, high back dining chair, rise recline chair etc.

4. Apply for any benefits and support -Attendance allowance if retirement age, PIP and carers allowance if not. See if you council offer a short break service, Many give a set no of free care hours per month or quarter. Some charities dependant on your area offer help in different ways - counselling for carers, sitting service.

5 Care Support - if low savings under 23k it's worth contacting social/adult care services for care assessment as this could lead to some free care. You can also ask for care assessment which will give you the short break service mentioned above. If you have to pay for care yourself it's worth starting yi investigate care co or individuals in your area and consider starting with some care hours to give you both some support and to give you a break. As you build a relationship with care Co or individual you can more easily build up the hours as you need them.

6. Look at getting power of attorney for both health and finance as this is useful in helping you deal with everything,getting all things such as bank accounts, bills etc into your name. Look at preparing an advanced directive.

7. Start reading up on CHC funding - nhs funded care for primary health care need. This funding is very hard to get and applying at the right time, when there are clear healthcare needs and high risks is critical. There is lots of info on PSPA website, .gov site and on Beacon and Care to be Different websites. Yoy can read about the process and see the 2 stages - checklist and full DST and its worth reading and downloading these and then reviewing your partners symptoms against these over time. You will get many medical professionals saying irs impossible to get but there are some on here with PSP who have and we did recently. It's worth starting a daily diary, a few notes every evening to record what's happened during the day - eye issues, falls, choking, bowel or bladder, cognition issues, medical issues, appts, hospital visits etc etc and record what you have done as carer eg medication mgt, prevented falls, feeding, managing communication, behaviour etc. This xan help you track changes and identify when its the right time to apply and its invaluable evidence at assessment time.

That's all i can think of at the moment but I hope some of it helps Gx

[Danish21 in reply to Millidog]

Hi Millidog.

Thanks for all that, its an amazing post, so much information and some good ideas on tracking the disease progression for future use. In fact most of it has struck a chord with things I have come across already. I will definitely have to read through this a few more times and make some notes to carry forward.

Thanks very much for your time.

[AnneandChris in reply to Millidog]

Hello there

That is the most comprehensive and helpful reply I've seen for years. It really encompasses all that is needed to be done. Well done!

Sending hugs to you as you start this journey which varies from one to another.

Keep on keeping on

Anne

[45purple in reply to Millidog]

Sorry to hear about your wife.Exactly what I would suggest. Good advice in the reply.💜

[Richard33 in reply to Millidog]

Millidog,

That is a great reply - very helpful!

Richard 😊

[Willowden]

Hi and welcome, though sorry you have to be here.

Great post from Millidog.

The only other thing I can think of is to look into applying for a blue badge for parking if appropriate.

Even if you don’t feel like you need some of the services yet, it’s still worth getting referrals, as there can be waiting lists.

Sending good wishes to you and your wife.

[Danish21 in reply to Willowden]

Hi Willowden,

Thank you for your comments, Millidog has given me loads to think about and your suggestion about a Blue badge is pretty high on our list of priorities, but we've been stopped from applying for one until we had a definitive diagnosis which we only got on Friday last, despite going round in circles for the last 4 years.

Thank you for your best wishes, its appreciated, as is your taking the time to send this message. I'm sure that we will find people like yourself and Millidog on this forum who will be willing and able to help when we get stuck.

Once again, Thank You

[pmcdonough1]

Sending you and your wife positive thoughts. My husband had PSP starting in 2013. Millidog did a great job outlining what your needs are going to be. The advice that states one day you don't need it and the next you do is a true statement. I wish I had done a checklist to keep track of what needed to happen to ensure my husbands comfort and safety. Here are my bits of wisdom, I am sure it is not conclusive but maybe it will help you on this journey.

Communication:

I told my husband that I would be with him every step of the way and that we were a team. I kept that promise and I know it was reassuring to him that he had me as his advocate when it became difficult for him to communicate. Communication is key. When he was weak, I would ask him to hold my hand and I would only ask him yes questions so he could squeeze my hand if I asked the right question. Such as: "are you in pain", he would squeeze my hand. "Does your head hurt", he would squeeze my hand and I could get him medical care. He was always able to communicate to me through squeezing my hand. My husband found it comforting for me to remind him that I loved him deeply. Say it often. I would call his family and best friend who live far away so that they could talk to him. I read where one spouse invited friends in to sit around and socialize, I think that was a lovely way to keep your loved one in touch. When we knew my husband had something happening to him we made a bucket list of places we wanted to see and we did some traveling before his symptoms progressed. We sat many times in the years to follow and reminisced on our travels.

Documentation:

Over the last 6 months I kept a daily log in a small spiral notebook. I wish I had started logging what was happening on day one. I kept his vitals, nutrition and fluid intake as well as his bowel and urine output. I would also log any pain he felt etc. This helped in communicating to medical staff when issues might have started.

Nutrition and Fluids:

Start now focusing on ensuring your spouse is getting enough nutrition and fluids. This becomes a challenge as PSP progresses. My husband's dietician wanted him to have three nutritional shakes a day. I tried to become creative adding thickened drinks to improve hydration and nutrition. My husband would become dehydrated. I noticed his skin on the back of his hands when pinched would take longer than 3 seconds to return to normal. When his Oxygen and Blood Pressure would drop below 90 I would take him to seek medical care. The medical staff where we went would give him fluids and his vitals would return to normal and he would be alert again. Have the discussion with your doctor now on how your wife can get IV fluids when needed.

Constipation:

Early on in the process my husband suffered from constipation and he had a tremor. They started him on Carbidopa-levodopa which had an improvement on the movement of his bowels. His doctor also added Docusate and later Senocides.

Cognitive Impairment (Dementia):

My husband was diagnosed with cognitive impairment. His neurologist perscribed Donepezil at 10 mg. His cognition improved very quickly as did his swallowing. He was able to swallowing without aspiration again. As the disease progressed and he started to have swallowing issues again the Doctor increased his Donepezil to 20 mg.

Preventing Falls:

My husband would forget he could not balance and had numerous serious falls. Consider having someone stay with your spouse when you must leave the house.

Hospital Stays:

In the hospital he could not push the nurse button, this required someone to be with him to anticipate when he was uncomfortable or putting himself in danger. In the hospital it is a good idea to ask for a sitter or arrange for family and friends to sit in the room. At home or in the hospital I tried to keep track of the food and fluid intake but also the bowel and urine output and ask him questions which would eventually identify when he might have constipation or a UTI early and notify the nurse or doctor. During each hospital stay, I notified the nurse staff that if my husband was not able to verbally answer questions if they held his hand and asked him yes questions he would be able to communicate.

Peg Tube:

After a serious fall my husband did get a Peg Tube. I was thankful my husband had the peg tube inserted for nutrition but also to ensure he would receive his medications which allowed him to sleep and be comfortable. My husband experienced a bleeding stoma 4 days after surgery. He would recover, come home then experience gas from a medication given him called Sucarate, his doctor would eventually tell us to stop giving this medication as it caused him discomfort. We learned that when a patient stops swallowing there is a weakening of the muscle where the esophagus connects to the stomach, this will make reflux issues worse. When given medications, nutrition or fluids through the peg patients must stay raised at a 30 degree angle.

I wish you the best.

[LostinHeadSpace]

Danish, I see there is wonderful practical advice here already--but I'll add to give both of you time to process the news you've just received, in your different ways. One might be ready to charge ahead with practical matters just as the other needs to take a breath and not think about it for a couple days. It's life-changing news. The people on this board are truly wonderful and will help walk you through the practicalities and the emotional ups and downs. You are not alone with this.

Lost

[Kelmisty]

Amazing advice so far, a couple of things that spring to mind from the experience with my Mum and her PSP & CBD;

Hospice, please reach out to your local hospice to see if they can support. Scary yes, but my local one is invaluable for my support to support Mum.

Parkinson’s Nurse - no idea why they still call them this but they deal with all neurological illnesses. So ask your GP for referrals.

And whilst it it very difficult to speak about, make sure you seek to do it sooner, what does your loved one want in terms of future care? My Mum has made it very clear she wants no tube feeding or treatment that doesn’t have a betterment for her. Hard to discuss but important. The hospice helped us with Do Not Resuscitate and Respect forms so it was clear what she wants.

Attendance Allowance or PIP depending on age, mum gets the higher rate.

I won’t lie this is a very scary and hard journey to support, Mum is still speaking slowly and says it’s awful. Get support for you.

K x

[timbowPSP]

Not a happy day for you, such a shock, and the world spins. I also was diagnosed at 79, 4 yrs ago, and continue life successfully. Good thing is at this age it's a better chance it will develop more slowly.

Without advice from NHS, I chose to follow a path of exercise, changed diet, supplements and therapies. I've written 3-A4 pages of my own discoveries, advice and useful information. You'll find it useful I reckon, and I will send to you if you please send your email address.

Very best wishes to you both........ PSP = Please Stay Positive! TimbowPSP

[LuisRodicioRodicio]

Hi Danish21!!

I'm sorry PSP came into your lives. but despite everything there is enough space to enjoy what remains and alleviate the situation of the patient....and the caregivers.

I find Millidog's suggestions excellent and practical.

The comments from AnneandCrish, Willowden, pmcdonough1, LostinHeadSpace, Kelmisty and timbowPSP are endearing and practical. So many excellent people on this forum!!!

Through internal chat I have sent you my email in case you want me to send you the information that we have been collecting about experiences with this disease.

A big hug, luck and courage.

Luis

[Wifey4U]

Exercise, exercise, exercise!

[daddyt]

Excellent advice from all the veterans from this group that no one wants to belong to, but are sure glad it's here. I would add exercise, exercise and exercise. It can slow down the progression of the disease and help with mobility issues... depending on the variant. As Luis said, "big hug, luck and courage."

Tim

[Dickwin]

Danish,

Welcome to our rather exclusive club. As you are finding out, this group is caring, compassionate and knowledgeable. You have been given a wealth of practical advice from people who know what you are going through and know how you feel right now. And you can bring new issues, questions and rants here any time you want, and you will be listened to. I don't know what I would do without this group.

My first bit of practical advice is that you live one day at a time. When my wife was diagnosed with PSP over 6 years ago, she had been exhibiting symptoms for about 5 years before that, and had been diagnosed with Parkinson's for a couple of those years. She was re-diagnosed with PSP in 2017. At that time we were told that she probably had 4 to 7 years to live. I started to obsess over how much time we had left and I fixated on 4 years. Well...4 came and went, then 5 years, then 6, and now we are on our way to 7 years and she is still going strong. My wife is 11 years into symptoms and over 6 years since PSP diagnosis, and I wasted an inordinate amount of time obsessing over time. I know at this point that these conditions can change rapidly, but right now we are doing pretty well. I have learned to stop counting the days, and just focus on the quality of the days we have left together, one day at a time. And I learned a lot of this from the good people in this group.

Keep sharing and do ask questions, share developments, and come her to complain. We look forward to your discourse.

[Wigwambob]

Hello there!The only thing I would add is that when in possession of your disabled badge you contact council tax for a reduction of 25% on your bills. It may take a while but is certainly worth it.

Very best wishes to you both.

Sylvie.

[Danish21]

Hi and thank you to everyone who has taken the trouble to reply t0 my original message.

This has been a heartening experience for us to finally realise that we are not alone dealing with this thing called PSP,

I feel quite emotional that you have taken the time, when you are experiencing your own difficulties, to pass on your experiences and advice to us. I have no idea if this message will be available for everyone to see cos I am competely new to this type of forum but If not, if someone lets me know, I will try to thank you all individually for the amazing array of thoughts, comments, and simple help with everyday things as well as the hard bits.

I will return to ask for more help when we have started to adjust and get our heads around some of the implications of living as well as we can with PSP.

Once again, Thank You All Danish21