I apologise for not writing sooner. We've had a mad week.
Phil had his appointment with Prof Morris last monday. We went armed with lots of questions and were really hoping to come back with advice and knowledge to share.
However, although phils symptoms look pretty convincing to be psp, Prof M wanted to hold back on a diagnosis for now. The reason being - his young age of 42! P ticks alot of boxes. He has slow vertical saccades along with stiffness in limbs and reduced arm swing , to name a few. There is one more genetic test outstanding . This result will be back in around 6 weeks. Prof M has booked a phone appointment end of January with us. If this test shows he hasnt got a faulty gene, he said he would still hold back on psp diagnosis. He said if P was in his 70's he would diagnose him.
He felt it best that we didn't ask our questions at this moment in time. He wants to see how P's symptoms will progress. So it's a case of ' wait and see'.
He was very supportive and reassured us he would help us in any way he can. We discussed medical retirement. I can't see P being able to work much longer.
We are still feel in limbo. But after talking to other young psp sufferers, (on here) we realise that P may never get a definite diagnosis. We don't want to wait around for a diagnosis we may never get. So we feel it's important to look into our finances, getting things in order and we are going to do all the family things with our children that we want to do. We personally believe that P has psp.
P had his birthday a few days ago. We got through it. We will get through Christmas too!
I'm sorry I am unable to share any knowledge.
This is an amazing forum. Thank you all so much.
Merry Christmas. Xx Emma
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Karibu
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A very helpful post for us and probably others none the less. Although we are both older than Phil (70) we are prepared for the possibility that we may not get a diagnosis from the neurologist we're seeing soon for a second opinion, and what you've just said reinforces that. It will, however, help both of us enormously to be properly listened to by someone with more knowledge, experience and empathy.
None of us know what the future holds and although older than you, we agree that putting affairs in order and enjoying family things with your children in the here and now is a good place to start.
Emma, I wish you and your family a very happy Christmas. I am shocked at how young your husband is to have PSP. Having said that, I recall someone else in their 40's on this site who had it.
I have a theory which may well be mad but because so many people are misdiagnosed to start with I suspect many of them have PSP when young. There have been quite a few people in their 50's with it too.
Someone else mentioned people being killed in crashes but nobody knows until they are dead that the cause of the crash was PSP.
So I think consultants are worried unless people tick all the boxes. However some don't. Especially if they have another condition which muddies the water?
Good luck to you both. Have a great Xmas and enjoy your lives while you can. Make lots of memories.
It is difficult as he is so young but my advice anyway would be to do all the things you want to do now. Whether to retire is a big one. You need to plan because if it is PSP it will be inevitable.
Share with us when you know more and have a good Christmas.
I think that starting a systematic gymnastics program is not going to change Dr. Morris's final diagnosis but it can help to Phil.
I suggest:
Without any scientific basis, only observation of few nearby neurological diseases PSP like, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected.
In our case, we have been following this program for a year and a half:
Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): At least go up and down 50 steps (odd days), walk 200-300 meters (even days), speech therapy exercises and exercises mouth and ocular muscles. Then she needs to rest at least 30 '.
We have seen that laughter and good hydration (moisturizers for skin and liquids by mouth) help to mantain in good shape the face muscles.
In general it is important to encourage the patient to do things on their own. It is good that everything the patient can do by his own means, do it, even if it takes more time. With some help if necessary.
The result in opinion of the physiotherapists and the family physician is for a year and a half she has hardly lost movements and reflexes. Unlike she has been reduced significantly the ability on verbal communication. We are renewing speech therapy exercises to improve it.
Emma, my husband is 71. Our current neurologist won't give a definitive diagnosis either, even though it so obvious my husband has PSP and no PD medications helped. The docs at the movement disorder clinic in St. Louis pretty much let me determine the diagnosis based on my daily eyes on observations. (Perhaps because only an autopsy will reveal definitively.) I don't focus much on that anymore. We, too, have gotten financed in order, secured all the help Medicare provides and focus on ever evolving strategies that help us get through each day safely. God bless you and P.
Hi my name is Frank, my wife has PSP. In one way we were lucky I guess. My wife was diagnosed with Parkinsons first like most other folks. But within 2 years we were referred to a movement specialist and she diagnosed my wife within 10 minutes of see her with PSP. That was 5 years ago. At least we were able to find out what was going on. We were able to do some things together that we are unable to to now. This disease can move very fast and not two people are the same. It sounds like to have moved to get all of your affairs in order. Cherish your time together now, May God bless you in your battle
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Definite diagnosis, at last.
The Bluebird
Update on Sudden Decline
