Hello From Across The Pond, Definitive DX Help

[FionaBeth]

Hello, I'm new here and actually am from across the pond. Briefly, my husband is 48 years old and has been experiencing tremor, gait, depression, dementia and cognitive problems such as loss of time; lost of ability to think through problems; and more. He no longer drives.

He has had neurocognitive testing which seemed to eliminate Lewy body, Alzheimer's, etc. But could not conclusively rule out Parkinson's. He has lost his job due to whatever this is and the stress of losing our home does not help his condition.

We've been to a neurosurgeon and three neurologists. No one seems to be able to agree what is occurring. His PET scan, two MRI's and two CAT scans show nothing except normal aging. He does seem to experience the eye movement problems, which appears to be the only distinctive or maybe the better term is differential symptom.

But it is not downward, it's upward gaze, that seems to cause the most problems. The last neuro said to us, "Not all patients read the textbook." We are frustrated and devastated. My first is question is: "Are there any other people on here whose spouse had such early onset of PSP?"

And my next question is this: "How did you finally get a definitive diagnosis?" We still feel as if we are in limbo and this, "Oh, wait another six months and see," attitude is frankly, unacceptable. Any help would be greatly appreciated. Thank you.

[Kevin_1]

I am so sorry to hear your news, illness, job, house and all - it must be tough!

My wife developed PSP in her mid fifties. There are many different -dementias' and other brain disorders and they don't necesarilly show up with the various brain scans until much later on.

I believe the PSP gait is one of the 'diagnostic' signs of the disorder. I am open to correction on this.

Try this - hopefully it will be useful.

youtube.com/watch?v=4H2BJvd...(Not working as expected?)

Best wishes to you both.

BTW we are most of us here a bit spread about this old planet.

[Tokki]

Very sorry to read of all the problems you are experiencing. I cannot offer any "right" answers but my wife started showing symptoms many years before we finally got her to see a neurologist. Even then it was a lot of tests which slowly ruled thing out. The PSPA website has a lot of very useful info. about the various symptoms and there is a similar organisation in the US but I can't recall the name right now.

The final diagnosis was offered after a DaT scan and the results discussed with both the consultant and the specialist Parkinson's Nurse. Maybe this test would help?

Good luck.

[Heady]

Hi, unless things have changed recently, there is no definite test for PSP, well there is, but that's at autopsy! Not what you want to hear!!! Problems with the eyes seem to be the biggest give away. I can walk into a PSP meeting and know immediately who has the disease. I have even diagnosed somebody who was going to the gym class that S was attending, the doctors at that time had told this guy, NO! S has what my daughter calls "his scary eyes", wide open and the look of being scared.

As to age, the average on set is 63. Though we do have people of your husbands age on here. S is now 71, but I can,(with wonderful hindsight) trace back certain moments, that I now know was PSP, 20 years ago. His spacial awareness started going. Lots of things that have happened over the years, which caused us pain, has PSP written all over it!

If your husband has PSP, I'm afraid, frustration is an everyday feeling. The main problem being, there is nothing wrong with his body, nothing wrong with his brain, it's the bloody neurons that are dying, so messages aren't getting through all the time! He WILL feel perfectly normal, hence the so called irrational behaviour.

My main advise is, while you can, ignore the symptoms. Get out, do all the things on your bucket list, plus loads more. Live life to the full, make lots of good memories. Life is NOT over, just changing. Be as positive as you can. Oh, and get him doing as much exercise as possible.

For yourself, stay on this site, rant and rave, ask any questions, we all support each other, during this long journey, that's called PSP!

Lots of love

Heady

[longsuffering]

That's the best advice you could give this new person! Do everything and more-AND stay as fit as possible as that makes a big difference when things go pearshaped and you end up in hospital. Good muscles will make all the difference to getting out and keeping on going.

[LynnO]

My husband had symptoms that were becoming obvious that something was wrong for about 5 years before we got a diagnosis. He is now 58. His first symptoms that were continuous enough to question, were his cognitive abilities. He couldn't follow conversations, couldn't figure out plans, (he was a construction supervisor) would forget in the middle of a phone conversation what was being said. All was very frustrating and scary. After about 6 drs. he was about to give up and we happened upon a neurologist who suggested either PSP or CBD. and then dropped the ball. I contacted CurePSP.org and got a neurologist who was familiar with both, and after testing cognitive, and motor/eye movements, and an MRI he confirmed (the best that you can without an autopsy) that it was PSP. Now my husband still has good parts of the day. He walks like he's drunk all the time, and sometimes needs assistance to walk. He can't look up or down, but can still move his head pretty well to make up for his lack of eye movements. His cognitive abilities are getting worse, but at least not all day. He still has almost "normal" times, but always feels like he's in a fog. Getting a diagnosis was long road, but it did make him feel like he wasn't' going crazy...at least there was a reason why things were going wrong. I'm assuming that "across the pond" means you're in the U.S.? The neurologists we found are in Columbia MO. (He sees 2 - one for cognitive, one for movement. Both agree with the diagnosis.) Are you anywhere close to there? Waiting "another 6 months" can seem like a life time. I'd keep searching for another neurologist if that is possible. Stay on here, there are a lot of great people and great ideas. You're not alone!

LynnO

[goldcap]

FioanaBeth. what a pretty name! It took us four neurologists over 5 years to get a definitive diagnosis. When I look back he had symptoms long before that. It is not just looking up. It is up down and peripheral, and the eyes are the ""tell" that it is PSP rather than Parkinson's or some other neurological disorders.The final Doctor based his diagnosis of PSP with eye tests from a Neurological Opthamologist (and he is one of the leading doctors in the US). I have never heard of anyone getting it so young. I am so sorry for you both. The muscle around the eye is the supranuclear, hence the name. That is why driving is affected-one cannot see peripherally. It is as if you are driving with binoculars on. Tunnel vision. Just keep on reading up on all you can and stay on here. I know it is disconcerting to not have a name for his illness but I think it is worse once you find out there is not any real treatment for PSP. Everyone is right. Don't put your life on hold, start doing. And it does not have to be expensive trips. Little things become so important and fun! Losing your home i awful. We went through the same thing. But our downsize now feels like a blessing. You need to have him closer where you can keep an eye on him. I hope you have family for support, and I know friends usually cannot deal with all of this. Especially since you are so young. I am younger than my husband and many friends could not deal with it as if it was an age issue and they do not want to be reminded of their own mortality. Oh dear, I think I have not been very positive here and I do apologize. There will be sporadic moment of joy as well as exhausting days and tedious nights. But through it all you will love and hold on to each other. Things will never be "normal" again. But you will adapt to the new normal and you are stronger than you know. trust me on that one. Please look after yourself as well as him. Stay in the day-my mantra!

XO Jayne

[FionaBeth]

Thank you all! I will go back and answer, but, I just wanted to say thank you for making me feel welcome. It's hard to reach out (even online) after being the type of person who helps and now is the one in need of help. Thank you all again...