does anyone have trouble being believed

[horseandwolf]

in the area where i live no one seems to understand what psp is. my neurologist here had his supicious but could not diagnose for sure, so i had to go to specialist 300 miles away to get definitive diagnosis. i was referred to physical therapy where they had never heard of psp, but were great at finding all the information they could find which is rather limited. none the less the therapy they have devised has been very helpful. however, when i went to the emergency room when i was having pain and spasms i tried to explain that i had psp, but the nurses acted like i was a drug user looking for a fix my wife got very upset. when i was released my wife could not get a nurse to wheel me out so she had to get me to my car by herself. am i going to face this problem anytime i need medical assistance?

[NannaB]

It’s now 13 years ago that my late husband was diagnosed and we had the same problem in the U.K. He was the first person any doctor at our surgery had seen with the illness. I printed out information from the internet which I took to the surgery and the many emergency hospital trips we had after falls. In the U.K. we also have a PSP association which supplied me with small cards saying what my husband had and the symptoms. If there is a similar association where you are, perhaps you can contact them. The internet information did help and attitudes changed when I handed pages and the PSPA cards to medical staff but unfortunately I did have to do it every time.

[Kasenda]

Sorry you are having this problem. Unfortunately as it is such a rare illness( maybe it is fortunate that there aren’t more sufferers) you will find this everywhere in the world. Though since my husband was diagnosed in 2014, the people around us, family , friends and neighbours are aware of PSP. Also as my husband is now in his 11th year, many health professionals are also learning about the illness. Maybe as we do this, the world will be a better place for the future generation . Let’s stay positive and keep keeping on. All the best from someone who understands your situation.

[Heady]

Hi, Nanna B beat me to it! My husband had PSP, nobody ever accepted his symptoms were to do with this evil disease. We are in the UK. Like Bev, I always carried a card, given to me by the PSPA and handed them out when we ever attended the doctors, A&E, etc. When he was admitted to hospital, part of the packing, was the leaflet discribing PSP in all its glory. I am sorry, but this will be part of your life from now on, which I know adds insult to injury! One day, unfortunately or not, if enough of us try and educate the medical profession, PSP might actually be recognised.

Sending big hug and much love

Lots of love

Anne

[timbowPSP in reply to Heady]

Good response ...... you know that PSP means Please Stay Positive!

[bazooka111 in reply to Heady]

excellent response ((hugs))

[daddyt]

I know firsthand the lack of knowledge by most medical professionals with PSP. There are even neurologists who know nothing anything about it - that's pretty sobering. Bev and Anne have given you good advice regarding the pocket/wallet-sized card to carry with you at all times. As they've said, you can get the card and informational handouts from the PSPA. If you are in the US, you can get a similar package from CurePSP.org.

Tim

[bazooka111 in reply to daddyt]

hugs Tim

[Burtz]

In addition to a medical card in my wallet, I have a medical ID bracelet with my name, emergency contact name/ phone number and”PSP brain disease” inscribed on it.

Every bit helps. When I was being diagnosed my neurologist flat out said I didn’t have PSP but when I asked for a second opinion he was very good about referring me to a more knowledgeable provider.

[easterncedar]

I see you are in the US. May I ask where? It seems we were pretty lucky, in a way. In 2011 in little Waterville Maine it only took two appointments with a neurologist for us to get the PSP diagnosis. We went to the Lahey Clinic near Boston for the confirmation and specialist treatments after that. We did have to explain often, but generally people understood if we described it as “what used to be called a super-Parkinson’s syndrome.” Always added that Parkinson’s treatments don’t work for it. We did however have good results from the Parkinson's PT programs LSVT Big and LSVT Loud. We had to go to Portland, an hour away, for the LSVT Big, which really helped with balance and walking. Worth it.

[Kayelless]

I’m a patient here, and I’ve had lots of experience with misdiagnoses and not being believed by medical personnel…and even doubted by my family and friends. My now ex-husband flat out denied there was anything wrong because to him I looked okay.

PSP was my shadow for 6 years before I was diagnosed in April 2022. The neurologist who diagnosed me, at Shands Medical Center in Gainesville Florida, knew in under 10 minutes what I had because she’s one of those rare neurologists who studies this group of rare diseases. I’m lucky she’s very open in her discussions with me.

My symptoms started in 2016. I’d kept a diary when symptoms became clear to me in 2018, listing the direction and circumstances of each fall along with any injuries or recent meds changes. I had 24 falls in two years, made lots of trips the ER, broke my hip and had to move to another state to be near my daughter before anyone would recognize that I had a physical problem and wasn’t just weirdly clumsy. My family doctor even refused to refer me to a neurologist in 2018.

I’ve found that wearing a medical ID bracelet that says I’ve got PSP and being able to explain in just a few words that it started out looking like Parkinson’s but now there are a lot of symptoms closer to ALS, including no treatment and no cure, they can get started treating quicker. Those few words tell them which of my symptoms are the reason I’ve shown up at the ER, but I’m often asked if I’ve had a stroke because of my speech problems.

That card sounds like a great idea. Unfortunately the rareness of this disease means only a few understand without my explaining it to them. Another neurologist who I saw last month for an EMG told me what I have is REALLY RARE (!) — yeah, I know that — and his staff called hours later to enroll me as a study subject. Thanks, but no thanks.

Not all docs like to be educated by patients. So I keep it short —

My short speech:

“The short list of my PSP symptoms are my lung capacity is at 50 percent, I’m in danger of aspiration pneumonia because I can’t swallow consistently, my fine motor skills are shot, voice is fading as you can hear, I’m urine incontinent and stuck in a wheelchair most of the time. And it’s all downhill from here.”

Wish I could fit all that on a bracelet!