Writing to you from New Zealand where thus far we have had no contact with other PSP sufferers. In late 2019 my wife (80yrs) had significant weight loss and tremor. Was originally diagnosed with BET (Benign Essential Tremor). Some months later this was changed to Parkinson's. Prescribed levodopa with no effect on any symptoms, 3 months later diagnosis changed to possibly PSP. This confirmed 2 mths later by neurologist. Who basically said 'no treatment, no cure, no point in coming to see me again and if you fall it could be the end for you'. OUCH! That was 2 months ago. What we need to know is where to from here? What can she expect? Current status: very unsteady, tremor is nearly non-stop, nights are noisy and restless (but not for her), some forgetfulness, painful calf muscles, rapidly failing eye sight, can (on occasion) be asleep 16 hours a day, is exhausted all the time, cannot fully dress or undress, teeth grinding. This has gone way faster than we thought it would/could and we are both scared at what is coming around the corner. Please tell us what we can expect.
Where to from here?: Writing to you from New... - PSP Association
Where to from here?
Hello Blair and welcome to this site. So pleased you found HU! You will not feel alone any more, and you and your wife will find support, help and advice here from all over the world. I live in Hamilton and my husband died in 2016 with CBD (Cortical basal Degeneration) which is in the Parkinsons Plus group of brain diseases.
As you say, there is scant help available in NZ, although there were several posts from someone in Napier a couple of years ago whose wife died last year. He has not been on line since, but I can contact him if you would like me to and see if he will share his experience.
Meantime, let us know where you live and any other details you want to disclose.
Get familiar with how this site works, the search, and the resources available, and read past posts and responses. All are likely to give you much more relevant info than most specialists!
Your specialist in particular would do well to read a copy of PSP for GPs! He sounds like he does not have a lot of contact with patients, or follow up on their future wellbeing! Not impressed! Take heart that you will find a greater practical knowledge here than he has!
I will send you a private message once I have been in contact with the man in Napier.
Don't despair! Kia kaha!
Hugs
Jen xxx
Good evening Jen. Thanks for your response and your comments. Suddenly we don't feel quite so alone. In the list of current symptoms I forgot to mention the dysphagia. Thankfully nothing too serious thus far but it is just one more thing to be aware of.Kindest regards, Blair
Have sent you a message. To read it, look for the orange number at top of page at 'Chat'. Touch it and you will be able to read it.Hugs
Jen xxx
Hello Blair, Sorry to hear ur news. I totally agree about the heartless words of so many 'specialists'. I am 79, diagnosed (in England) 2.5 years ago. Same prognosis, which made me angry. I determined to action a plan of therapies, diet, exercise, and food supplements .... I have deteriorated a bit since then but not greatly. Still driving and social life, with my partner keeping a careful eye on me! Have written 3xA4 pages on my experiences, and can send to you if you wish: Tell me ur email preferably as it clogs up a lot of space done here. NZ is my best country (apart from here), and spent 6 months travels with Kiwi companion, based from Waikanae/Welly area, 10 yrs ago. I really feel for the two of you, and wish you all the best, and love. Timbow
Oh yes Blair, remember PSP stands for Please Stay Positive! xx
Hi welcome aboard, not a site any of us wanted to join but I found it an absolute lifeline for my journey with my Mum here in the UK. I personally would have welcomed the neurologist telling us there was no point going to see him, rather than mum getting her hopes up that this time he would be able to offer help, it was so exhausting and stressful for her to attend the appointments and heartbreaking to see her disappointed. You learn that very few medical people will have heard of PSP and fewer seen it but they generally don't like to admit ignorance, you will learn far more through this site and personal experience. If you can, get physio for your wife and a speech therapist (SALT), work on the if you don't use it you lose it principal. Have an OT assessment to offer advice on mobility aids. Think about getting carers to help your wife get dressed/undressed or with meals. You need to look after yourself to be able to look after your wife. And ask questions, share experiences and vent on this site. It does help.
Thanks for your response and advice, Yes, you are right about the neurologist. It was a shock at the time but we agreed later that he said it like it was. No beating about the bush or giving us false expectations but we all live a little on HOPE and expectations that tomorrow will be a better day and that maybe there is a researcher somewhere about to make a break through. Or maybe not. Take care and thanks
I'm sorry but not sorry the neurologist did this my loved one has been suffering for almost 7 years. The neurologist kept giving her false hope of surviving this disease. That's true this far no cure for PSP. They don't truly even know how to help we have only made it this far by finding different things to make it work. As far as dysplasia goes there is a battery operated cup that she pushes a button and fluid will come through the straw for her it's called drink e-z cup manufacturing out of Canada. Staying hydrated is important as dehydration will make things worse. Her vision is impaired because the suffer has slow eye movement and everything looks like a blur we use a steamy hot wash cloth 3 times a day seems to help the eyes focus better. The tremors she takes amandine helps with tremors and stiffness. Unsteady with movements be sure to use a walking aid cane, rollartor. But the longer she can walk the better off she will be. There is tons of helpful information here to help you and your wife. I believe we all felt alone until we discovered this site. There will be a tremendous amount of patience on this journey. Best wishes.
Goodness me. It's 0130 here and after reading the posts last night I had to get up and try to respond. The feeling I have is not unlike being into a room full of strangers and then across the room seeing an old school friend. As a result of the responses, in just a few hours virtually, we have moved from knowing nothing and feeling isolated to reading comments from fellow travelers. Thank you for your advice. We currently use a cane and have a 'walker'. I shall mention 'amadine' to our Doctor and later today will give the hot wash cloth a try. Stay safe!
A PSP diagnosis can be overwhelming, and the callous disregard by the neurologist has made a difficult situation unnecessarily more difficult. Is there a Parkinson's Group/Association near you? As well, your GP should be able to refer you to the local publically funded health care system in seeking resources. If so, they may be able to direct you to resources such as an Occupational Therapist who could assess your wife's needs for mobility and recommend aids (walker, wheelchairs, making the home safer through use of grab bars and poles in the bathroom, etc.) as her condition progresses to keep her from falling and injuring herself. As well, PSP patients do well if they participate in group and individual exercises and social programs. Are there Caregivers available through the health care system in NZ? Again, a local Parkinsons' association can direct you to such a group. My wife was diagnosed in 2018 and the journey can be very challenging. Making use of all available resources through advocacy is one way that I found to be helpful.
Dosco
Good morning Dosco. 0200 here. Into a new day with still more Olympic coverage. We have been in touch with the Parkinsons people. They were extremely helpful but the contact we had there said that she was aware of PSP but we were the only PSP person in her group. We have installed the safety aids where needed. Very worthwhile. It is, I suppose, early days yet in the journey and sometimes I get this feeling of sort of standing on the beach watching this huge wave rushing towards me and I don't know how big it is or if I'm strong enough to save the person with me. Thanks for your advice. Blair
Sorry to hear about your wife. My wife (age 64) was diagnosed about 1 1/2 years ago after about 1 year of seeing numerous doctors including ENT, heart, pschologists, neurologists, allergists. It was a long battle to get the analysis of PSP. She has basically the same symptoms as your wife except she has no tremors. As you will find out. everbody's case is somewhat different in terms of severity and speed. In our case, my wife is failing pretty quickly and the current prognosis is 6-12 months. You can pretty much see the decline day to day. At some point, you will probably see the "sundowner" effect kick in which is especially difficult. This will cause brief outbursts of screaming, crying, yelling, etc. which you will learn to just ignore (somewhat). Not a fun journey but it seems that in the end you will find some peace with the help from others knowing that you are not the only one.
Goodness me Oilman1. What a short, sharp, painful time you seem to be having. I hope and pray that the journey for my wife and I will be longer. I am unaware of the 'sundowner' effect. Sounds terrible. This is one tough disease to put up with and no doubt you have found courage that you didn't know you had. Thanks for your input. Stay safe. Blair
Hi Oilman, please could you explain more about the "sundowner" effect. My mum does do a lot of yelling and screaming but then that's also been present in her life over the years. Interesting to know a little more then if the character v PSP effect. Thanks.
The "sundowner" effect occurs at the end of the day when you see a sharp change in mood (could be crying, screaming, tantrums, etc. - I also get "you are the worst caregiver ever"). It normally only lasts for 5-10 minutes or so and usually finishes with a crying spell in the bed. The neurologist told me that the intensity does not necessarily coincide with the person's pre-PSP temperment. An example would be that some previously calm people can turn very aggresive while others may get calmer. In our case, the wife was very outgoing before and gets very agressive now (normally at the end of the day but I am starting to see it at other times now). We were given some medication to lessen the effect but the side effects were not good. They caused her to sleep even more than her current 20 hours a day so she stopped taking them.
Thanks for this but sorry you have to go through it. Even though you know you're so not the worst caregiver, it's still not easy to hear.
Blair,
I have been through the gamut.
The most important thing is actually your health and well-being so please please use all the help and support you can get.
NZ and it's people is a superb place to be so enlist the help around you. I live in the UK and took much too long to ask for help. It was there and available and the difference it made was fantastic.
This is a crap disease with a rubbish outcome but if you know you have done your best for both of you there will be no regrets.
Take care
Tony.
Hi Blair, sorry to hear about your wife's diagnosis and it is a terrifying prognosis. Have a look at pspassociation.org.uk for more information if you haven't already, we find them invaluable.
Someone a while ago posted some notes about what to look out for at various stages and I'll see if I can send them to you via chat. It is helpful knowing what to expect but not to focus/dwell on the future. I have found that it's good to have an overview of what might happen so can be prepared but to take the here and now.
If you've not done so already, consider powers of attorney (or NZ equivalent) and future treatment plans. Not easy conversations to have but at least knowing your wife's wishes helps give an idea if you need to make decisions later. My brother and I had a difficult afternoon with Mum in this respect but did say we only wanted to do it once rather than keep referring back to it and causing her more pain.
Thankyou for your helpful response. My wife is worried about how much physical pain, if any, is involved. You are right about the helpfulness of this site. Awesome.Thanks again, Blair
If there is anything "good" about the disease it is that very little pain is involved. My wife gets some pain in her legs and neck but it only occurs infrequently. But again, every case is somewhat different.
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