My dad and PSP

My dad has just recently been diagnosed with PSP. We are wondering if he has had this already for quite some time. Me and my husband and my mum had noticed a change in my dad over 12 months ago but as you do you question whether your doing the right thing and whether there was something or was we looking into things to much. Anyway fast forward he has been under the neurologist for the last 8 months who has said about it being PSP. We are waiting for another appointment with a neurologist who specialises more in this field. We know there is no treatment for this and it is an extremely upsetting time. I think its frustrating as to know what stage he is with the PSP and obviously people progress differently but kind of feel its a waiting game and you are constantly looking for symptoms.

[messier]

I'm sorry to hear your news but pleased that you have found this forum with lots of advice and support. Almost everyone here has a story of how long it took to realize that something was wrong, get Drs to pay attention and then get a diagnosis. This is not a disease where early diagnosis means there's a better chance of cure as there is no cure. The focus now is to get the right support for all of you that works for what you need now, knowing that those needs will keep changing. It is impossible to know how fast it will progress or how it will progress as things are so varied.

[Kayelless]

Yes, you’re right. It’s a waiting game. Yes, you’re constantly looking for new symptoms or some symptom getting worse. Yes, everyone progresses differently so no one can say how your experience will go. It’s awful, and I’m sorry you’ve joined our ranks, but the people here are experienced and ready to answer questions you have if they can. They may know more than any neurologist can know standing outside the disease with a clinical point of view.

First thing I would say is the symptoms “stair step.” You drop a step, you level out, you drop two steps, you level out, you drop another step, etc.. steps can be tight and steep like an old Amsterdam canal house or wide and smooth like the British Museum entrance. They can be a mix of the two. It’s unpredictable. Every day is a new normal.

The order of symptom appearance is different for everyone. Not everyone gets every classic symptom.

Give yourselves space to be less than perfect in handling every day. Forgive yourselves when you’re frustrated. Talk often and honestly among you.

Everyone here will help you along as best they can.

— Kyle, 66yr old female patient

[doglington]

I agree with others. My husband died with PSP and I nursed him at home. My advice is first that this group is a lifesaver. I don't know how I would have coped without the practical advice, support and humour I got here.

It's a brutal disease so make the most of NOW. Do anything you planned if at all possible. Make good memories and hang on to your sense of humour.

Good luck Jean xx

[MRSYafffle]

Sorry to hear the journey you're on with your dad. I would agree with what everyone has mentioned. The illness is brutal but the stages are very different for everyone. My mum has been in a long battle and for her the first thing that noticeably happened was issues with her voice. It was very slight to begin with and took years for the symptoms to progress and as other issues and symptoms appeared an eventual diagnosis was made.

This forum has helped me so much since I discovered it. It is a wealth of information and it's fair to say you'll end up being more knowledgeable than most healthcare professionals you'll encounter.

I found it helpful to ask at the outset of an appointment if they had encountered this disease and was glad of those that had but explained the complexities to those who hadn't heard of it.

In the end I made a poster and put it up in mums explaining everything.

The stages I have found hard to navigate so I understand your upset.

As others have said take the good days and moments and equip yourselves a dark sense of humour (it does help)

Sending lots of love your way xx

[Golden13Mixed in reply to MRSYafffle]

CURE PSP has a Guide book which I have given to each of the doctors I see. Although it is free I make a donation when I request copies. The goal of CURE is to educate others about PSPand unlocking the secrets of brain disease. The address is CUREPSP 1216 Broadway, 2nd Floor. New York, NY 10001. website Curepsp.org E-mail [e-mail]

phone [phone] and 347-294-3873

There is also a magazine called BRAIN&LIFE - NEUROLOGY FOR EVERYDAY LIVING---- It is a free subscription. BRAIN & LIFE PO BOX 1908

LOWELL MA 01853-9967

YOU CAN ALSO SUBSCRIBE ON LINE AT MYBLsub.com.

[captainsdaughter]

Like others have said, so sorry you’ve joined our ranks, but take comfort that you’re not alone. Like you my dad was diagnosed last year, although looking back his symptoms were probably misdiagnosed previously. my dad’s neurologist told us that there are actually 7 variants of PSP and it’s such a complex condition. My dad is now in an excellent nursing home and although his mobility is limited to transfer with help from chair to wheelchair, his speech can be very poor and his swallowing isn’t always that good, mentally he is fine. Everyone’s experience is so different. My advice is don’t be afraid to ask for help, for you or your dad, everything takes a long time to sort out so try to plan ahead and use the PSPA and this forum for help and advice. Good luck

[timbowPSP]

Hi Naomi, and welcome! I am 81, diagnosed 5yrs ago, and still mobile, socialising, driving and reminding people PSP = 'Please Stay Positive'. From the start with no advice available I've followed my own routine: Targeted exercise (Pilates, etc), Diet (basically Mediterranean vegetarian), Supplements (many), and Therapies (Homeopathy, Osteopath, Acupuncture ....). Does all this help me? I dunno, but I feel better for doing its and 'taking charge'!

Yes, there are about 7 variants, all developing at different rates, and it seems that the older you are when this PSP attacks the slower it develops. So for sure help ur Dad do what he is still able to do, and to achieve what he can ... as TODAY may be the best day of the rest of his life! I understand it is on the Parkinson spectrum, and is a form of Motor Neurone. Sounds pretty horrific, and looking ahead I don't envy my carers!

Very best wishes to you, with love and luck TimbowPSP 👍🌺

[daddyt]

Hi Naomi. In hindsight, I think we can all see changes in our loved ones, or sometimes ourselves. Try not to get hung up on the disease stages. No two people will experience the disease the same. I had symptoms associated with the latter stage for about the first two years after diagnosis, plateaued for a period, then more progression. Wash, rinse and repeat. I'm now in my ninth year. If he is able, get your dad started on an exercise regimen. It may make the difference in his mobility and mood.

Good luck

Tim

[Purrlie]

So sorry your family is dealing with PSP. This site is truly a wonderful source of information and support. It sounds as if the neurologists you are consulting do have knowledge about PSP and that is really good, but for all the other health care workers you will encounter along the way it is a good idea to have at hand printed information provided by the PSP Association that you can share with them. All best wishes to your dad and the whole family. Purrlie

[Dance1955]

so sorry to hear your sad news enjoy every day with your dad while you can

Treat the symptoms as they arise don’t look for miracles just do the best you can doctors can only help with what you ask for be his voice his advocate just try to enjoy the special moments take care of yourselves too and be kind to yourselves hugs to you and your mum

[timbowPSP]

A bit late, but hope interesting or useful ... PSP - GENERIC ADVICE Hi ('Hidden'), and welcome! I am 81, diagnosed 5yrs ago, and still mobile, socialising, driving and reminding people PSP = 'Please Stay Positive'. From the start, with no positive advice available I've followed my own routine: Targeted exercise (Pilates, etc), Diet (basically organic  Mediterranean vegetarian), Supplements (many), and Therapies (Homeopathy, Osteopath, Acupuncture ....). Does all this help me? I dunno, but I feel better for doing its and 'taking charge' (Very important)!

There are about 8 variants, all developing at different rates, and it seems that the older you are when this PSP attacks the slower it develops. So for sure help ur Dad/Mum/other do whatever is still possible, and achievable ... as TODAY may be the best day of the rest of his/her life! I understand it is on the Parkinson spectrum, and is a form of Motor Neurone. Sounds pretty horrific, and looking ahead I don't envy my carers ….. but right now I am as well as I possibly can be! Very best wishes to you, with love and luck TimbowPSP