We have an appointment in a couple of days to see a new neuro. After being on this site and learning so much that NO Dr ever told us - I'm angry. I feel like this Dr. visit will be a waste of time. If you could go back to an earlier Dr. encounter - what might you have brought up differently. What would you have wanted to know sooner than later? What role should this Dr. have in this journey? It would be nice for Jack to have a Dr. , an important one like the Neurologist, to be aware of who we are at least. Any advice on what I should be looking for??? I am not looking for a mother ---- I think, at least, old fashioned respect for him. OK that's my whine. I think we are coming close to bringing this PSP in for landing in the next year or so and I want Jack to have Dr. at his back. Maybe this gal will be great - I hope so ~ Thanks. Alicia
What questions for new Dr.: We have an... - PSP Association
What questions for new Dr.
Doctor , as you may know this is a progressive disease, and with that I would like you to have a progressive respect for my loved one as they go through this situation....Please discuss amongst your peers what would be some good things to offer my loved one as well as my family as we all go through this. I would be most appreciative if you could go beyond google and use some of your PhD to find what your comrades have experienced to work or not to work in providing comfort and maybe even eliminating or at least lessening some of the symptoms.
Most of all doctor come over from the other side of your desk and ask Bruce how he's doing....Look him in the eye he can still see/perceive you are there....Let him see the hope in your eyes even if that's the only place there is any.....
Oh My Gosh - Wonderful!!!!! Thank You - Yes, the other side of the desk just for a minute or two.
I hope you get the kind of neurologist you are looking for Alicia. You said you feel that this visit will be a waste of time. After about 3 visits to my husband's neurologist he more or less said the same thing. He said there was nothing he could do and the other professionals involved could provide more than he could. He also said he realised how difficult it was for me to get C to the hospital so recommended we stopped seeing him. Like you I learnt more from this site than from any professional. C never saw our GP for the first 18 months after diagnosis but when we needed more help I asked for it i.e medication for excess saliva, saliva pump. Whatever I asked for the GP said, "That sounds like a good idea" and got it for us or contacted other relevant professionals to provide it. I know he phoned the neurologist several times when I asked for things as well. C was the first PSP patient doctors at our surgery had seen. C's GP told me I knew a lot more about it than he did but by the time C left me, our GP knew a lot more. During his illness, all the doctors at our surgery came to see him. They didn't expect me to take him to the surgery once he was in a wheelchair. Sometimes I just wanted reassurance that everything was OK when he had what they called neurological blips, peaks in temperature etc but they always came out or phoned me back. They always spoke to C before me even though they knew he couldn't reply. They treated him with respect and kindness even though they couldn't do very much to help him. I did have a problem with two professionals who said ridiculous things to me but all their experience was second hand and from books. They had never had to do what they were advising. I hope the professionals helping Jack are as helpful as most of C's were.
Best wishes.
XxxX
Thank You, Thank You - Up until now - we've been doing OK - I know what's ahead - I'm not sure Jack does - I think he should have a doctor. We are at the point of him no longer being left alone at all. He had a good week and we are now back to not being able to make it 6 steps. He cannot get himself up from a fall. He goes up and down stairs one step at a time and fairs well using the railings - He has no choice - no bathroom on the main floor. Needless to say , he doesn't always make it :} He is double incontinent and wears a pad for one end - he was just checked for a UTI........He eats and drinks without choking although he has had times with choking, especially liquids. I do cut up the food small - His hands don't work so well( 20 minutes it seems to butter the toast-lol) One eye is closing on him. He speaks well much of the time, although he did not in the past - weird. He is not a big talker anyway, and he never wants to go anywhere, although he will. Then we rest for two days. He is on sinemet and amantadine. I almost forgot - he is under treatment for prostate cancer, too - dang - poor man.
I will keep an open mind and my smiling mouth closed for now and see if this new Dr. will lead him through the next couple of years. Love, Aliciamq 
I think you really need try and get a bathroom downstairs, it will become increasing difficult as PSP progresses. The best would be a wet room so ease of access in a wheelchair.
The doctors in our experience have been so so, I think it's difficult when it's a progressive illness like this because timescales vary so much. Our GP has been more helpful than the hospital consultants. The GP knows you and are more compliant. Don't worry too much about the Neurologist, I hope it goes well. What you really need is an understanding GP and the advice and tips on this forum. Monitor carefully any changes in medication that you see. All the best.
Your husband seems at much the same stage as mine, though I no longer allow stairs. Going upstairs to the loo is crazy. Men are so lucky - they can use a bottle. Even a plastic milk jug cut to leave the handle intact works great. Train him now while he is still in reasonable health. You can also order on line a contraption that goes over the toilet to raise it, that has rails and a removable pan - so you could use it downstairs as a commode. It will make both your lives easier.
Good luck!
Ur experience, NannaB, is very similar to our own. My husband seldom sees a Dr and has never seen a neurologist since the day of his diagnosis. Truthfully, what would be the point? The other professionals in our lives e.g. physiotherapist, speech therapist, are much more helpful. One day (hopefully soon) the neurologists will be given the tools to help but until then it's a case of making the most of the support we have.
Margaret
That was beautiful, NannaB I know in all its difficulties that you were able to have dr's look kindly on C. They sounded approachable though had little to give except respect.....and finally, this is really what our loved ones needed (besides a cure)...
Love ya Bev,
Andrea
p.s. Dear abirke - I am writing down what you said as tears pour down my face - good tears that you are there ~ and, NannaB - I hope we will be lucky because I think we are going to need help going forward - Thank you both once again
Take the knowledge you have and listen to what/how the docter has to say. Don't be afraid to ask matter of fact questions. If new meds are being introduced or existing ones increased do ask what benefit does the doctor expect.
Good luck,
Ron
And what side effects as well. Everything my hubby took had side effects, either hallucinations, constipation, diarrhoea, drying of skin, headaches etc etc.
X
Indeed, and maybe are these for this particular disease or more for Parkinsons etc....what side effects ...have you heard of any new treatments etc...and if you want to be apart of any research studies maybe tell your doctor this....this may pique her interest in your mother's care and treatment......her name on research is good for her portfolio..... I'm sorry i am still being Curt
AVB
Ben's neurologist, although a very nice man, hasn't been that supportive and didn't really give any indication of the progression of this horrible disease more or less leaving us to find out about the journey. The GP hadn't heard of it but has been supportive although we haven't had a home visit since he has been unable to visit the surgery. She does however ring to discuss things when I ask for a call. The Speech and Language Therapist has been the most supportive and makes visits every few weeks, she has a special interest in PSP as she did holiday work experience at the PSPA Head Office and was great when we applied for CHC for funding. Mostly my knowledge has been from this site and has helped tremendously and nothing is such a shock as the disease progresses and I hope you find the same.
Sending my love
Kate xxx
Our Neurologist was useless, just told us to go home and Google PSP. The only good advice he gave us was to join the PSPA, which is where I found this site. All my knowledge, I learnt from the good folk on here.
If I had my time again, the one thing I would insist on, is that someone sat Steve down and explained what PSP was, how it would affect him. My husband was a biologist, with a PhD, he needed someone with equal intelligence to give him the facts. Not just me, whom he believed was being an alarmist. I did try to get all sorts of people to talk to Steve, but nobody would. I suppose in truth, they didn't know. Never come across it before, wasn't in their training and precious few had ever heard of Google, or bothered to read the literature that the PSPA sent them.
Best of luck.
Lots of love
Anne
Hi Heady, after Colin died I found a huge file. He had downloaded everything he could on PSP when he was first diagnosed. I was still working so didn't know he'd done it. A few weeks ago I met someone who belonged to the bridge club Colin went to. She told me that when he was diagnosed he asked to speak to the large group who met in the village hall. He explained what he had and all the symptoms, reading from notes he had taken with him. I knew nothing of this. He was brilliant talking 1-1 but hated addressing groups. He asked them to tell me if it became obvious that he couldn't play anymore or if he was holding folk back. I'd told him I would mention it to the leader, and did, but it was only recently I found out how brave he had been. He is still surprising me, nine months after leaving me.
Where gas the time gone?
XxxX
Gosh Bev, that must have come as a shock! The only thing I know that Steve did, was join us to the PSPA. So I guess he must have read about the disease then, but that was right at the beginning, just after diagnosis. Already his very few computer skills were leaving him, so I don't think he did much research.
Time? It goes so fast, yet oh, so slowly. Each day can seem like forever, yet these 6 1/2 months have flown by. It's Steve's birthday on Sunday. My first anniversary hurdle to jump. Already getting into a tizz about it. Plan to spend it anywhere but at home!
Still ploughing through the legal side of things. Probate took forever, now I have to start instigating his will. More money. These solicitors don't have to worry where their next pay cheque is coming from, do they???
I hope you are doing as well as you sound, I'm fine, until someone says boo, or scratches my surface. I guess you are too!!!
Lots of love
Anne
You are right about the anniversary hurdles Heady. Colin would have been 70 in August and our eldest son and his family have asked to come and stay then so I will have distractions and on our 45th wedding anniversary I will be in Canada staying with a widowed relative. I'm going to Australia with our middle son and his family at Christmas so the next one will be my birthday in March. I try to arrange things on all special days. I sorted probable myself via the internet. It was very time consuming but not difficult. I just ploughed methodically through the paperwork. The will was straightforward so I didn't need the solicitor. I too have the boo moments. A couple of weeks ago, two separate people who live in my road, asked me how Colin was. I thought our village jungle drums were more efficient but apparently not.
Take care Anne.
Lots of love
Bev
XxxX
That is lovely Bev . By the time John was diagnosed he was unable to explain how he really felt and Up was all down to me totake contfol
I do remember him asking me quite a while before he started to really struggle him asking me if I would start to make all the important decisions , I thought he was being sarcastic !
When he had a mental health assessment I told her he was struggling to hold conversations and the young carers just wasn't helping chattering away about silly things ,
She told me he needs to be with people he can hold ,eaningfuk conversation ,.
He still does .
We are still here plodding on,
What do u think the go came out the other day ,a very Rae occasions
The oarkinsons nurse who visits sometimes has had an op so we have no one
Then I received a letter asking me to make an appt to take John to out patience ? He is bed bound ceiling hoisted has been for five yrs ,
I have decided I will go with my daughter to have a chat with him bring up about the saliva machine and PEG .
Things I have asked for over and over . The o nurse arranged palliative care , they know come and talk to me waste of time He doesn't need that ,
That's been for over eighteen months .
They wrote him off John hasn't PSP as far as we know ,they keep saying Parkinson's We changed from Sinemet to Madapor a while ago which did seem to help a little but not anymore ,
Because I cannot keep him responsive for long enough it's so stressful for feeding for both of us. And keep No him hydrated .
He is eighty three but my mum was ninety when she had a peg fitted after a stroke . She was in hospital and John has never been in except for when he had a knee op ...
I have started to have one night sitter at last tonight is the second time they have also given me more respite hours .gone from 6 hrs to 18 hrs Brilliant now someone is here to help me hoist and toilet john before I go out and when I get back ,
I am not out for long I cant bare to leave him v long ,
I'm so pleased you gave a night sitter. It makes such a difference. When C first had his I still didn't sleep much but we had the same one for 40 hours a week for 3 years and she became like part of the family. We are still in touch and have meals out together. She is now working in a residential care home so it doesn't break any agency rules.
Try and enjoy your time out and meet up with friends if you can, to talk about happy things.
Lots of love
XxxX
Yes I will I mostly go with my daughter she is taking me next Sunday to the cinema to see an andre rieu link up concert . First time to cinema for fifty years lol I hear they are different these days lol .
I have another special friend who gives Chris a break from me we are going out tomorrow . Xx
Enjoy' XxxX
I am and have had a tuff time talking to Jack - i cry😢 I know he doesn't need that. He said early on " We'll just keep going until we can't anymore". That is what we've been doing - one day at a time. Things are getting a little more intense and i think he needs a refresher. As you suggest, that information coming from someone other than I, would be welcome.
Have you a hospice involved yet? I found them to be the best. Steve went once a week to their day centre. He loved it, lots of pretty nurses to make a fuss, plus several interesting patients. They all made an effort to help him, as he couldn't communicate by then. I got a day off, plus they did run carers groups and counselling which I made full use of.
Sorry, don't know where you are, this is the UK I am talking about. I do know that others have had various sort of help, in other parts of the world. Check with your Doctor.
Lots of love
Anne
I'm in the states and we do have hospice closeby - I will look into what they may offer - some said bcz Jack is a Falling risk - he qualifies for services - we'll see~
Yes If you don't feel like neurologist is telling Jack everything, then guide the questions like, I heard PSP may cause behavioral issues such as an OCD...recurring behavior...such as turning something on and off or picking at something or telling someone to turn the humidifier on and the heat of at church (you get the gist) ....ask Jack if there is anything he wants to talk about ....ask him, he'll say no....so direct a question that he might be having or a problem like urinating; or when do you think I need a walker....would a cane be as good ....Is physical therapy going to help (It's better to have it than not) or what agencies or classes etc are good for my wife...will she have to lift me at all; is there any good physical therapy classes for Caregivers....how to move an immobile person..You can see...I could go on for 4 more years so I won't ...
Good luck tomorrow and remember my prayer form the other post..
.AVB
Wow Heady, Dr Steve, PhD biology (NOT neurology) ! It's simply amazing how the neurologists, seem to have the least amt of knowledge and or respect...maybe it's that the'yre all suffering from Asperger's Syndrome (a newly archaic term for Autism) or hey maybe they all have an even rarer form of PSP where Apathy and and loss of "vision" are the only two maladies suffered...ok there I go again ...ive got to get off this post before I smash the damn screen in....
How about student loans and being so dang young!!!!
it took me several times to read this before I got it!!!! Yes school loans $100,000 and 33 yrs old or maybe 18+14 =32 yrs old....is about how much education one would need......so they are a least 32 before they become an MD!!! thats basically your whole youth.....dang.....
Our neurologist was empathetic, always talked to Chris and answered my questions truthfully. He also said, on diagnosis, that it is progressive, terminal and there is no known treatment. I appreciated his honesty.
He also told me about this site, where all my questions have been debated honestly.
Our GP had never heard of the disease but eager to learn more and interested. So far we have not really tested this, as Chris is pretty healthy.
Our main support is our local neurological team. The matron comes and sees us every month and refers us as she thinks fit. She used to work with the CHC and will therefore know when we are likely to get it. There are a few others with PSP in our area [ S.E. London.
I do think you need to organist toilet and sleeping on same floor. Essential.
love from Jean x
I am on it - I had to call the fire dept. for help this morning - Our living room will become our master suite and my drawing table in the kitchen nook will be traded out for the porta potty. Thank you - I am too timid when it comes to changing stuff and my husband always says he's fine. 😑
I was insisting on him going upstairs. Only when I saw the faces of my grown children when they saw me doing it did I see how risky it was. I arranged for a hospital bed downstairs. I had had a downstairs wet room put in on diagnosis.
I resist each step of the way !!! Its always part of " our life " gone.
xx
So true doglington, so true...I don't think my kids admonished me as I was doing all that I could and yet I still replaced yet another toilet......but I still wished I had started safety strategies much sooner!
AVB
Clearly!!! I resist as well and we're fine as long as we don't move!!!!!!!!
amq....My husband had the hardest time coming in to a building.....and before I got smart on what was happening, B broke many a chair and window and wall.....not so much timid as safety conscious! Bright red tape on corners; as guide lines ; warnings or supports are a few things which may go a long way in safety precautions....
AVB
We do use tape and we have gone through a couple of toilets - My husband has a terrible time getting through doorways so I talk him through - he says his eyes are fine, but any transition like from floor to rug throws him off. We will use the Valet parking and a wheelchair for Dr. Office visit tmo- it should go well getting him in there.
Good luck tomorrow don't be afraid to ask anything and everything....remember drs are not gods but they are also human just like you and me.....and your husband....I'm still trying to learn that one from sensei NannaB 
AVB
A Prayer:
Lord guide those who will be caring for Jack to a place of full knowledge and understanding of his disease. If it cannot be cured at this time, then Lord, please provide all the safety and comfort and knowledge that can be afforded to all who take care of Jack and his family...Amen
Oh my Gosh , Again - just saw this!!!! You all have forever changed it up around here - poor jack fell awfully this morning - had to call fire dept to get him up - he is in bed with ice packs on a shoulder and a knee - poor man- Thank you all soooooo much💓
Alicia, My husband visits his neurologist every 4 months. She has been wonderful and supportive. Never has she said there was nothing she could do, although she did deliver the official diagnosis like a sucker punch. There is always something to be done, if only medication to relieve a symptom. This is what I would expect from a doctor. I expect the doctor to be a partner with me to help my husband. From the outset, I told her my objectives in dealing with his condition (mitochrondial dysfunction, oxidative stress, tau hyperphosphorylation, inflammation.) I keep her posted on what we have been doing and what I have read about. I give her a diary of what has been going on/changes we have noticed. We discuss them as well. I give her a list of changes in supplements/diet. If I hear of a medication on one of the sites I visit, I will ask her about it, when to start using it, if any. She always tests for progression (e.g. stiffness, walking, eyes, some cognition tests.) I request blood tests I want done -- e.g. C Reactive Protein, homocysteine, Vitamin D.) This is to see if any of the supplements/diet are making a difference. I ask her about clinical trials or anything else I have read about. Oh, gosh, I know there is more, but you get the idea.
Yikes! Christine😄I see how we also need to do a part in informing the Dr. --- I always feel I don't want to bother even them😐Dumb.
A new Car for Mum?
"What If's...?!"
