just joined today. My first thought after reading the frustration felt at the lack of knowledge/understanding, is to print these pages off & hand them to your GP, and ask them to be leaders in improving the standard of care for PSP
The journey ahead is obviously going to be hard enough without lack of care from Medical teams
Welcome to the site.
The reality of medicine is it isn’t like TV. Doctors are only human. They don’t know much about neurological diseases. There’s not much they can do. It is a shock to find this out. From here you have to educate yourself. You have come to a good place to get information that will help.
Welcome - sorry you have had to join us but this is a great site for support and information.
The reality is that PSP/ CBD are so rare that many clinicians even Neurologists may never see a patient with these diseases during their career. To muddy the waters whilst there are text book descriptions not many folk follow a standard pathway hence the challenges with both diagnosis and treatment. I quickly learnt to start with low expectations go to appointments with a list of questions or requests in order to obtain the best care for your loved one. It is doable!!
Love Tippy
My husband was the first person with PSP who had ever been registered at our surgery. Once he was diagnosed by the neurologist I downloaded several pages from the Internet about PSP and handed them to our doctor. I didn’t know about this site then. When I joined, and different equipments medication etc was recommended, I would contact our GP and ask for them and he always said,”That sounds like a good idea”, and got them for me. By the time my husband died 6 years later, all the doctors at the surgery were experts. Until the professionals have actually come across any condition, they are not likely to know much about it except what they have read. The PSP Association have cards you can hand to anyone you think should know about it and have also produced information for professionals. I suggest you contact them and ask for anything they have that will help other folk understand. I always had cards in my purse which I handed to A&E staff, paramedics, health visitors, friends and family.
You are correct in saying the journey ahead will be hard and there are many times you will feel frustrated, angry and upset but no one will understand exactly what you are going through unless they have done so themselves, even if they have read everything there is to read, unless they have walked in your shoes, they can only imagine what it is like. I know what my husband went through but I don’t know how he felt or what was going on his mind. Only those living with PSP know that. That’s why this site is so amazing; we all know what you are going through. We all find different ways of coping and when times get really tough, messy, scary etc some will scream, others will cry or pray, say, “I can’t do this any more” or at some time all of them, and others will see the funny side...there can be lots.
Welcome to the site. I’m sorry you have cause to join but know it will be a tremendous help as it was to me.
XxxX
Suggest you visit the PSPA website PSP association.org.uk they have plenty of information leaflets including some for your GP.
When my wife was diagnosed with CBD in 2013 the neurologist directed me to the site, which also has a freephone number where you can speak to people who are very helpful. Best wishes. Ken.
My dad's neurologist didn't want me to write the name of the illness down when he gave us the psp diagnosis! He never gave us any information on it. He never offered us any support / counselling. I googled the name psp and found the pspa. Best thing that I never did. I have learnt so much from them and a lot more by just caring for my mum and dad.
How can anyone else know about the condition if the Neuro team don't talk about it to the patients and other colleagues.
We had information from the pspa and took it to our go. Like nannas husband my dad is the first psp sufferer at their practice so the gp and the team had no idea. They still don't have much of a clue now really.
I got cheesed off with the a&e doc recently. Dad fell, the paramedics were great and interested in dad. He was doing the handover to the doc and informing her that dad has psp. Doc looks confused so the paramedic said that it's part of the parkinson family and her reply was "Well why didn't you just say that it's Parkinson's "
I don't think mum and dad heard her but I wanted to shout out "because if not f**king Parkinson's. It's worse!" However being in the middle of a busy a&e with dad being traumatised enough I kept by big mouth shut! I regret that now. I should have spoke up and if it happens again I will shout out. They won't learn otherwise.
Pj x
Sadly you won't get too much support from the so called experts but I have found that the district nurses are worth their weight in gold and have got things moving for us where we have been treated as almost invisible by the rest. I was told by OT that we would have to go on a waiting list for an assessment for a hospital bed for my husband - a sudden deterioration made it impossible to get him upstairs - yet another assessment even though he has other equipment supplied by them so you would think that by now they would 'get it'. Hey Presto I was able to get this within 2 days through the district nurse who realised our situation required a bit of crisis management. They really do care. HilsandR
Hi NewCarer!
I am sorry to ear PSP entry your family.
By internal private mail I am sending our experiences on PSP-RS hoping could be useful to you.
Hugs, luck and courage.
Luis
To NewCarer, I completely agree with you with the lack of knowledge/understanding out there for people with PSP. Even some doctors look at you kind of funny when you tell them about PSP!!! I feel your frustration!
Being a caregiver has been the hardest job I ever had. My suggestion is to get as much help from family and anyone else you can. I hired a caregiver for 8 hours - 7 days a week. My impression is that you live in the UK, I live in the USA and know nothing about your health system. For my local support PSP group I put up a website supportpsp.com Everything on the site is free, it’s simply an information site that includes information like the best walker for those with PSP. Its called the U-Step 2 Walker. Not like most walkers, this one is always in brake mode. It requires the user to squeeze the lever(s) one or both levers for it to move. This way the walker doesn’t get away form the user. My wife was a doctor (her specialty was the aging brain) when she was diagnosed with PSP. She told her Neurologist that since PSP is a death sentence, she was going to fight. She found a study at Georgetown University in the USA that showed promise with the generic drug for Tasigna. Again, to read the study in full, it’s on my website. The average years a person lives with PSP is 10 to a max of 13 years. I have seen those in the later portion of their lives, and it’s not pretty. My wife is going on 16 years, and she presents as if she is new to the disease. There are times when I wonder if I did the right thing in prolonging her life, and then I realize she is still with me. Before my wife took to drug Tasigna, she started to lose her ability to speak. Falling was a common occurrence. Between the drug taken "off label" (it's a cancer drug) and the U-Step 2 Walker falling had totally stopped. Her speaking came back but I still see signs that she is declining. The drug isn’t a cure, but it slows down the progression of PSP greatly. Like yourself I’m just a husband taking care of his wife. My wife tried the generic of Tasigna, but found the name drug worked better; I purchase it out of India – From the USA it cost $14,000 US for 28 capsules, from India I get the same thing for $700 US. I actually had the drug from India tested, or I should say the hospital where my wife had surgery had it tested before they would allow her to take it. I urge you to check out everything I wrote, some will only apply to those in the USA, but a good portion doesn’t. The site address again is supportpsp.com. I wish you the best, I too have walked in your shoes… and still walking!
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