My husband has parkinsonism psp. How do you know what stage they are in? He is having sinus stinging, and a doctor put him on Glycopyrrolate

[mthteach]

[mthteach]

How do you know what stage a person is at with PSP?

[hmfsli]

Hi mthteach,

There are loads if replies to this question in the archive on this site but a basic summary would be that it is really difficult to work out. Generally it is based on the symptoms the person displays but, given that the disease affects different people in different ways at different times, someone may not experience symptoms described as Stage 4 at all, or have them quite early on in the progression of the disease. It's probably better not to worry about stages but just to deal with where you are. Sorry that's not much help.

H

[Hidden]

The general consensus of folk on this site seems to be not to worry about stages for the very good reson that the illness is so very individual dependent. The NHS Choices internet site puts forward synpotms in early, intermediate and advanced. You can have a look and see what you think. nhs.uk/Conditions/Progressi...

In our case, my wife only got the diagnosis on the 1 May 2014, but we already had many of the 'advanced' symptoms at 1 May 2014. One aspect neurologists look for is the time from first symptom to diagnosis. In our case, double vision and stiffness about 2.5y ago. reading the US NIH advice, it is possible with good nutrition, avoidance of falls and infections to live for up to 9 years post first symptom. other neurologists put this figure at about 7 years. Its Ok comming up with such figures but the quality of life during that time can be very variable and the proviso is that a sudden adverse event doesnt occur.

I spent a lot of my working life as a scientist often looking at stages of illness and prognosis. But honestly in this illness, it really is best to focus on the day. So today my wife goes to the hospice. If that goes well, then we will have done well for today. Best wishes for your day today

Glycopyrrolate is an anticholinergic compound used to treat sinus symptoms. Your doctor has probably concluded the PSP is responsible for the sinus symptoms rther than a cold.

[jimandsharynp in reply to Hidden]

Yes, well said. The quality of life differs greatly patient to patient. I listed symptoms that many PSP patients have and found TWENTY THREE that my dear wife did not have at any point in the disease. I call them the "gifts" or "blessings" that PSP can give a patient and caregiver. Jimbo

[mthteach in reply to Hidden]

jmbb,

Yes, the sinus symptoms are from the PSP, however, the Glycopyrrolate has helped him some. It is better than him taking benadryl every 4/6 hrs. That is what he has been taking for about the last month or two.

[NannaB]

Hi mthteach, welcome to the site. I can't add anything to what has been said, PSP sufferers have similar symptoms but they can appear at different time is different orders. Just try to take each day at a time, get enough help even if you think you are managing so you can have time to yourself and make each day as good as it possibly can be.

Best wishes.

Nanna B

[Heady]

Hi Mthteach, my heart sinks each time somebody joins this site, saying their loved one has just diagnosed! This really is a rotten disease, but you probably know that already! This site is wonderful, it will give you most of the knowledge that you need, warts an all!!! We are all carers or sufferers. My husband was diagnosed last September, has never had sinus problems, so can't help you there. But just because yours has PSP, doesn't mean he can't get other problems. PSP, loves to share the body, with as many illnesses as possible!

I'm afraid, there is no magic wand, although we all spend every waking hour looking for it. My advise, keep your husband as active as is humanly possible, DONT give up your normal life, try to do as many of them as your husband can. Yes, he will get tired, so make sure he rests regularly! Go out, book a holiday. Most of all, if he is still able, get a good physio. S has just started with somebody that does the ARNI approach physio with him. It's mostly for stroke victims, but will help anyone with neuro problems! He has improved so much, even after just three sessions! It's improved his movement, speech and attitude, everything!!!

Stay on this site, it's great for advice, venting ALL feelings and just being in contact with people who know exactly how you are feeling! Some blogs will depress you, lots will give you hope. Ask as many questions as you want. Remember lots of people read this page but don't actually join in, so what you ask, someone else will be looking for the answer!

The biggest thing to take on board is, "one day at a time". Each day will be different, some good, some bad, some evil! You will get through each and everyone. Try to stay strong, get as much help as you can. Nobody can do this alone, (but we all foolishly try!!!!). Try never to get into a position that you break, not good for your husband, definitely not good for you!!! By being strong, I mean for yourself, as much as for your husband. You have to learn (very quickly) how to look after yourself. If you are too tired to do something, DONT! Let's face it, most of the things we have to do, can wait. Even mealtimes can be put back half an hour, so you can have 10 minutes sit down!

Last of all, life does go on, it just different now, it's not the end of the world, just the start of a new adventure!!!

Lots of love

Heady

[easterncedar in reply to Heady]

Hi, Heady. My guy just started with LSVT Big, with a therapist one on one. I'm hopeful that it will help, although it will be slow going, as hard as it is for him to move at all. I'm curios about ARNI. What is it and how does your guy engage? I understand he is in a fairly advanced stage himself? Love and peace, Easterncedar

[mthteach in reply to Heady]

Heady,

Thank you for your advice. It has been hard at times. My car burned to nothing about a week ago. I called my husband, whom has PSP, and he got in the car and drove to where I was. He usually does not drive anymore, but I was only about a mile away. I had gone to the post office, and had 3 grandkids in the car with me. At least we had full coverage insurance. Thank got no one was hurt. My car burned, the car next to my car, and I burned the front of the post office. There were were 2 fire trucks, lost of police, and a chemical truck to handle the gas. The fire investigator said it was from the wiring in the dash. I was not at fault for the fire starting even though it started in my car.

Well the old car was a 2005 ford freestyle, and was paid for. Now we will have car payments again, but I will have a newer car. Thanks for letting me vent on here.

[nomansland]

Mthteach,this site will help you to not feel so alone,do use it,mywife Madeline began symptoms over 10 years ago so enjoy the present,,regards,Rollie

[jimandsharynp]

mthteach, I've posted this several times on this site but I'll post it again because I think it is worth knowing. PSP is not a one-size-fits-all disease. Each patient is different in how quickly or slowly the disease progresses. Each patient is different in the symptoms they have. Each patient can have the same symptom but to a lesser or greater degree than another PSP patient. As far as "stages" are concerned they just don't matter at all. There are supposedly four "stages". However, your loved one could have a bad fall with brain damage or broken hip and die in any "stage". They could aspirate, get pneumonia and die in any "stage", even "stage 1". They could get a serious UTI that causes hospitalization and death. Like all of us there are no guarantees in this life. THINKING you know the "stage" can be very disappointing if you are thinking "stage 4" and the person lives another three years. As caregiver and loved one you'd be better spending your time on care and love. There are no predictable certainties in PSP! Things might be bad and then the loved one rallies and gets better for months. There are some "level" spots (good and bad) often in PSP for some patients. Bottom line it is an unpredictable disease with an unpredictable length of life. My dear wife and I took one day at a time literally not thinking about what is ahead, what "stage" she was in, what symptom might be next, etc. Worry about "stages" robs your peace for today and doesn't change what comes tomorrow. IMHO Jimbo

[zjillian in reply to jimandsharynp]

Always such good advice. Thanks, Jill

[mthteach in reply to jimandsharynp]

jimandsharynp, thank you for your words of wisdom. I am so confused about the disease. I did not think my message was posted because no one answered. I find that spending time with the grand kids keeps both my husband and I busy. That is how we spend our days most of the time. He gets tired easily, however. He has had to retire from work, but he still does most of the normal things he has always done. He was only diagnosed last Oct. We suspect that he has had this a lot longer than ten months. My having to go back to work has made me start thinking about how long can I work etc... Thank you again.

[jimandsharynp in reply to mthteach]

mthteach, You didn't say how old your husband is. My wife was 66 when diagnosed but looking back symptoms were there earlier. It will be tough once you have to stop working I know. My advice is look ahead as much as you can relative to what is available for you later. Not what symptoms will come but service available to you. It helps with PSP to not get "blind sided". Jimbo

[jimandsharynp]

I forgot to mention something in my answer to your post. I dislike the term Parkinsonism to describe PSP. PSP is PSP and has it's own name. It is NOT the same as Parkinson's in many more ways that it is the same. Fine for the medical community to "lump" PSP, CBD, MSA and others together and call them Parkinsonism but as a caregiver it bugs me a lot and misleads people as to how terrible, very terrible, PSP is. Not that Parkinson's is a "piece of cake" but compare the two and you'll find PSP the worst of the two. There are medications for Parkinson's that work. For PSP there are no medications that work. Just my opinion but I'll NEVER use the term Parkinsonism to describe PSP. Jimbo

[zjillian]

Right on! I have taken care of both my father and husband and mother-in-law. My father had Parkinson's Disease, my husband has PSP, his father had PSP, my mother-in-law had Alzheimer's Disease. Who was hardest? Absolutely my husband with PSP. I don't know if it is the disease or the personalities of the sufferer. Also I've seen truly horrible cases of Parkinson's Disease that were a living hell. So once again it depends. One doctor put my husband on Parkinson's medication and he had a worsening of all symptoms....

Jill

[easterncedar in reply to zjillian]

oh my, Jill, you have had a row to hoe. I'm so sorry for you and your family. I've been saying "At least it's not Alzheimer's." Maybe I was wrong about that, but so far, 3.5 year post diagnosis, I wouldn't trade. My guy is still there, still thinking, still sweet.

[zjillian]

I had the same reaction as you did to the PSP diagnosis. I don't know why but PSP seemed less horrible. Maybe Alzheimer's Disease is the new cancer. That used to be the worst most scary word. People would just whisper it. Now maybe Alzheimer's has taken on the terror we used to save for cancer. And PSP is not in the popular culture so it hasn't become infused with all our fears......?

[Heady in reply to zjillian]

Hi, my husband has PSP, diagnosed last September. My mum has just been diagnosed with Alzheimer's. I feel as if I have lost them both. At the moment, I certain feel that PSP is the worst. There are so many different faces to PSP, that we have to contend with, while with Mum, it's just the memory loss and change of personality and she is not aware of any of that. But S know everything that is happening. Mum is 84 and S is 69, it's heartbreaking see her try to help S. It's the only time when that awful feeling of "why us" ,"life's not fair", etc., etc., comes over me!

Lots of love

Heady

[zjillian]

Oh Heady,

I am so sorry that both your husband and mother are ill. It is such a loss. I lost everyone at the same time too. It was and is too much to take in. My husband was 65 when diagnosed. My mother had just died and my father came to live with us. It is like suddenly you feel so alone.

jill