Hi everyone this my first post and I'm feeling very nervous! It will be 4 years this summer since I notice something was wrong and was so simple friends laughed and said don't worry about that. I been the supermarket and when I put veg in the bag I couldn't tie it up which I thought was really weird. By the end of that first year I couldn't fasten zips or buttons and my writing looked like a 4 old . I finally went to the doctor in June who sent me see a neurologist. after having a pet scan he told it was showing very rare and the best thing to do was to watch and wait. Last yearI struggling to look after my grandson i couldn't put his shoes for him it was taking for ever to do nappies .I felt unwell and my voice and eating affected .2 weeks later we went to see the neurologist. My husband asked him if i needed other scan and he said no. Doesn't need any scans. Do you want me to tell you what wrong with you. So of course we said yes. He said that you have cbd and he wrote down for us and we left. My husband went to work and I came back home thinking because we never heard of it then can't be that bad ! I didn't bother to looked it up but my husband did which very surprising . He toldl me he also went gback to see the neurologist 5 days later. My lovely husband told me the dreadful news. There has been no deterioration in my condition and I am not in pain but I can't use my left arm at all. We try to keep positive but I am sure you know how hard that can be.
Mama piggle: Hi everyone this my first post... - PSP Association
Mama piggle
Hi Mamapiggle
Welcome to the forum.
Its a big open hearted place.
Your post is so eloquent as to how this damned illness creeps up on one. Totally horrid!
I am so sorry you and your husband have to face this.
It sounds like he is very loving and sensitive to your needs. 
There is a lot of good info here which will help you plan and navigate your path. It does make a big difference.
Please say what country you are in. Then folk here can then focus on the legal and health frameworks which would be of most use to you.
Post away freely - people here don't judge and there is no flaming - Its a very safe place.
A warm, sad, welcome.
Kevin
Thank you Kevin, I live in Yorkshire England
Chuckles
I think we can cope with that 
If you don't mind those of us of the red rose. After all it was 530 years ago...
Welcome
If and when you want you might like to post about things to have in place for the future.
Lasting Powers of Attorney. Giving someone the power to mange your finances and clinical and social care should you be unable to do so.
Do not Resuscitate instructions should you choose.
Advanced Decisions. Which are decisions for the future instructing clinical staff about what you want should you be unable to tell them at that point in time.
These are good to get in place early on. They are not complex and there are folk here who can point you at resources should you wish.
Forgive me if you are up to speed on all of that.
Also it is a very good idea to get as many resources in as you can before you need them. Stay one step ahead.
Finally you probably realise that each person with CBD travels their own varied clinical path. You may not get the same symptoms as the next person. So please do not read others accounts and think you will be the same. There is variation. Some folk have an easier path through the illness. There are many things which can be done clinically to deal with peripheral symptoms too, as well as bags and wrinkles in the way care is given to maximise comfort and function.
Please think about exercise and physio early on. These preserve you ability to do things and keep your muscles going. Ask your GP for a referral to Physio. Be as active as you can - It will keep you able longer.
I am so sorry you are facing this. However you probably have plenty of time to
share good times with your husband. Do nice things. The diagnosis is not the end.
Sorry to throw so much at you.
Best to you both
Kevin
Welcome Mamapiggle but sorry you had to because of your diagnosis. Your husband sounds lovely and please post and let us know how you are getting on. Love Nanny857xx
Hi MPiggle
I edited my last post adding some stuff in which I hope is useful.
You might want to re-read it.
Best to you
Kevin
Thank you Nanny857 I will keep in touch xx
Welcome to the best place ever, all the people on this site are amazing, please post again would love it if you did. Yvonne xxxxx
Thank you yvonne and George. It didn't me long to find out what a lovely of people belong to is this group! I've got a very busy day today I'm going a drop in coffee morning at hospital I've been twice already but nobody there with my condition then this afternoon I'm going to see the speach therapist who what to talk to me about doing something called voice bank! I will let know how I get on Jeanette xx
Welcome to this site.
It always distresses me to hear how inept so many neurologists are in giving this news. If they can't do it they should give the job to someone who can. I remember our GP saying " You have a rare and fascinating condition " to my husband. I said, ! It may be fascinating to you but its devastating for us ! "
Kevin has given you the basics you need to get in place.
In general focus on making good memories NOW.
Where in Yorkshire ? I am also a white rose, although I now live in London'
love, Jean x
Dear Mamapiggle;
Hello and Welcome to this wonderful family of caregivers and patients who survive with PSP and CBD! My husband has CBD and first experienced symptoms in 2013: sounds like the same timeline as you.
If I'm guessing correctly, you have some positive things happening for you compared to some patients (such as my husband). You seem to have good communication, and you don't sound like you have any cognitive impairment. Both of those are real positives with CBD!
No matter what physical symptoms you experience, I encourage you to keep up some form of daily exercise. Many of us on this website believe you can keep the worst symptoms of the disease at bay, if you keep your physical skills up - even as the neurodegeneration takes its course!
There are other CBD patients on this site. I hope others chime in to share with you. Meantime - please keep posting and tell us how it is going for you
Hugs XXX
Anne G.
Hi Anne! Sorry the late reply but I got my phone to respond to all lovely messages I have received and taking long time and it hard work . I've put a SOS to of my sons for new I pad or tablet . Thanks to online shopping I should have new tomorrow! So hopefully I will be touch when he brings over tomorrow xx
Welcome to the site. Kevin’s outline of what to do is very comprehensive. It’s all good advice.
There is no typical progression to these diseases. Everyone seems to have a unique experience.
Checking in here with any question about anything that happens will be helpful.
Hello
I also have CBD and started with similar symptoms to you. I suddenly found I couldn’t tie shoes or put an apron on. My first neurologist was hopeless but I’m now with a great one at Addenbrookes in Cambridge. It has made such a difference and he is so kind and helpful. It is very rare that you find another doctor who knows how to treat you. My balance has now gone completely but thanks to the efforts of my wonderful supportive husband I still manage to get out most days. Keep your spirits up. Thinking of you
Jackie C
Hello jackie it's good to hear from you. I must be very lucky as I don't have problems with my walking and balance at the moment! I too have a l wonderful husband who very sad and feels guitly everyday when he leaves for work .I tell him I'm okay and not worry about me but I do miss him hopefully he be home soon! I do worry about him as really talk it . Hope you out and about this weekend. We probably have rain but the price you pay for living up north! Take care Iwill be thinking about you and your hubby xx
Hello again.
It’s so good to have found a kindred spirit with the same terrible disease. Although I am wonderfully supported by friends and family and they are very helpful and understanding nobody quite gets it. I am now completely dependent on others (mostly Andrew my husband) for almost everything including being taken to the loo! The only places I feel really safe are in my special chair and In bed. I can’t move without assistance in case I fall. My only consolation is that they tell me that my cognitive function is normal for my age of 69.
This disease seems to be different for every person. My symptoms are purely physical at the moment but that may change in future.
In June we are going to try having a live in carer as Andrew is getting very tired from having to do absolutely everything for me. He doesn’t complain but I feel so guilty about it all. He’s no spring chicken at nearly 73.
In June we celebrate our Golden Wedding and he certainly has taken our vows seriously particularly for better for worse!!!
Enough of my ramblings. Keep in touch and moan off at me sometime if you want to.
Keep smiling
Jackie
Wonderful to 'hear' you writing Jackie: I'm so glad your communications and cognitive skills are still good! May I ask when your symptoms started? (My husband with CBD started symptoms around 2013). I'd be interested to hear if you are willing to share details, and - by the way - if you aren't that's perfectly ok too! We are an understanding group
PS: As a caregiver to someone I love more than anyone on the planet, I can tell you a spouse, no matter how tired and sometimes even irritable at the "situation" would still rather have this life with their loved one, to complain about, rather than be without them. Its all worth it. XX
Warmly,
Anne G.
Hi Anne
I first suspected that something was wrong early 2015. My left hand started to feel a bit strange and just shaking a bit when I was using it. About May I went to my GP to ask about Parkinson’s. He said it was possible but it had to be diagnosed by a neurologist. I decided not to proceed with this as the symptoms were hardly noticeable. By the autumn they were getting worse so I went to see a neurologist who diagnosed Parkinson’s. I carried on with this for about a year but having looked after many people with Parkinson’s I was not convinced he was right. The final straw came when I asked him if he was sure his diagnosis was correct and he replied “ I haven’t got a crystal ball you know and I’ll see you in a year”. I went straight back to my GP and got referred to a Parkinson’s specialist who was great and told me I definitely didn’t have Parkinson’s but he suspected it was CBD but he wanted me to see Professor Rowe from Cambridge university who is a national expert on the subject of brain disease. He confirmed the diagnosis in February last year and it has been downhill all the way since then. In May last year we went on holiday to Germany and I was just walking with a stick and a bit of assistance from Andrew but now I can hardly get one foot in front of the other. Outside I use a wheelchair. The deterioration in the last six months has been remarkable and quite depressing. These days I can’t even go to the loo without assistance and I am completely dependent on Andrew for everything.
Hope this hasn’t cheered you up too much!! The one thing I do know is that everyone does CBD differently. Professor Rowe told me that he has had patients for whom it was all over in 2 years and others who were still going after 10 years.
Hope this helps. Keep in touch.
Jackie C
Thanks for sharing that Jackie. It sucks. No two ways about it.
Hubby has been on a gentle downward slide since 2013: He lost writing & speech as first symproms - along with apathy, but it was so gradual it took me a while to realize ir wasnt just aging. Up to last week he could walk, slowly, unaided, for a few blocks and went to 3X/week aquacize. He's had a "step down" to a new normal, I suspect (medical apptmts pending). All in all, that isnt bad for 5 years in!
I do think the aquacize has been helpful - but it will be hard to get him in the pool now..I'm willing to do it but he may have lost intetest. We'll have to see.
Hope you are a 10+ .......Why not?
Anne G.
Hi Jackie it would be good to know the name of your neurologist mums has washed hands once diagnosed CBD and am trying to find one that understands CBD in Lancashire having a contact I can ask advise from would be good x
Hi Greens
Have you considered calling the PSP Helpline?
They are really good on this sort of stuff.
0300 0110 122
You might also find you have a PSP Assoc. Rep.
My experience of them is they are superb.
They do advocacy with the NHS to get you what you need too.
They even visit you at home if the need arises.
Best
Kevin
Sorry to butt in.
We are a long way from you in Suffolk and my neurologist is based in Cambridge. His name is Professor James Rowe. I suggest you google him and see if he can recommend a specialist in your part of the country. I was sent to him by another specialist who I got from a google search for Parkinson’s specialists. This was because the first one I saw hadn’t got a clue but didn’t have the humility to admit that he was out of his depth. I was pretty certain by that time that it was not Parkinson’s which was confirmed by the Parkinson’s specialist that I found on the net. He suspected CBD but wanted it confirmed by professor Rowe as he was a national expert in this field. I hope you find this helpful. Good luck.
Jackie C
Where in Suffolk are you Jacki. I’m right on the boarder in Lowestoft
X
Hello Mamapiggle
My Mum has CBD and lives with me, she moved in 2016. Her symptoms started 2012/2013, maybe even earlier thinking back. Like you describe the shoelaces was one of first things she really couldn't fathom out. Also folding laundry and putting clothes on hangers. She tried to hide this at first. Then her writing went, ability to read and use the computer really difficult in 2015/16 that she stopped trying to. She had to stop cooking too as couldn't remember tasks in order or handle cutlery etc due to poor co ordination. She also has no use of left arm and hand, again one of first signs something was wrong as she kept holding it in lap.
She had numerous falls in the beginning but has been walking assisted since 2015/16. Now her physical ability and fatigue are poor, she hasn't been able to walk since beginning of year . As everyone has said keep as physical as possible and try to work the brain mentally.
Welcome to this lovely supportive forum who were and are a godsend to is when I joined two years ago now.
Much love x
Hello Spiralsparkle. The first part of the your mum's symptoms are just like mine. If was the trying to anything my husband say use your left hand even his sister told when she came to visit. My own sister told me I should be writing every day! I would look them and I can't do it they would say you have to try . Moving on to the present day! I c an read .my kindle but I can't turn pages. I'm slow when texting and miss out words . I can't cut my foot m myself and I've watched what ii eat also I seem make a mess which I find very embarrassing. I don't any problems at moment with walking around or balance. It does longer to get dressed if something inside which normally is it me ages to work out .xxx
Hi. Sounds very familiar, I forgot about the dressing . Like you say anything inside out was very hard for her to work out and took alot longer to dress.
Mum also was very embarrassed about eating and still is but unable now to coordinate cutlery to food or mouth.
If you have any questions do let me know, each person is unique on the sequence of changes but if can be of any help. You will know your own capabilities but I Know Mum does needs some encouraging sometimes when her confidence was knocked.
X
Remember an early symptom with my husband was organising and sorting. He couldn't work out how to dress, couldn't pack parcels or play " bingo " with his grandson. Its very distressing, isn't it ? xx
It's certainly is! My grandson came on thursdays and after tea I would put in the bath. Later when I finally got him in his pyjamas he would shout WE'VE DONE IT GRANDMA!
I do miss that. Xx
Grand children are wonderful. Ours were very tender and loving with Chris.
On one occasion, playing cards, our competitive 10yr old even agreed grandad had "snapped " first even though it was clearly a bit late !!! Anyone who knows will realise how loving that was !!!
Remember, it might not be how you imagined it would be but it will still be precious memories for them.
love, Jean xx
What a fine young man he is/will be...
Yes he is! We are waiting for arrival of a baby brother due next week don't what think about that xx
Contact the PSP helpline love
There will be a local group where you can learn a lot from us others. There are groups at Pocklington. Leeds and Doncaster that I know of. Peter
Thanks Pete may have to think that one not sure if feeling brave enough I wouldn't by getting upset! @
Find out you local group leader and have a chat or send an email.
Mamapiggle,
So sorry for your diagnosis but, as others have shared, this is a wonderful, supportive and knowledge filled site.
My husband was diagnosed in 2015 with CBD. We went out to lunch afterwards not realizing what the diagnosis meant. I researched it the next day.
His initial symptoms were similarto what you described, however his first concerns were regarding his memory. Eventually we got to the shoe tying issues and putting shirts on backwards, etc.
Just want to say to be VERY careful to not fall! My husband had a severe one and has been in a nursing home for 7 months. Falls can exacerbate symptoms dramatically.
Pls keep in touch. People on this site really do care.
Hugs, Liz. 💕
Hi Liz , everyone has been warm and friendly I'm glad I joined the group. I've only had one fall which18 months ago I landed my face. Everyone kept asking me why I didn't put arms to avoid hurting but didn't have an answer for them. I so sorry you're husband is the care home I hope can come home soon; have they said when will be? I say bye for now as writing this email email on my phone and don't why is writing it so small. I will definitely have t o a new I pad to like hard work on this phone xx
Mama P,
Glad you haven't fallen in 18 months. That's great.
I didn't know what Kevin shared regarding balance. I learn something new every time I'm on this site.
Hugs,
Liz
Hi Mamapiggle
I'm glad this forum is working for you.
Just in case you don't know. The falls are caused by a diminished sense of balance processing in the brain. So when folk fall it is common that the self protection reflex doesn't kick in because that too is part of the part of the brain which processes balance.
Sorry to say this, but hopefully you can factor it in to keep yourself safe.
Have you got an Occupational Therapist involved? They are very good at assessing your home and your needs and to help you plan to make it a good environment for you.
Warm wishes to you.
Kevin
Thank you Kevin, I will in touch later when get my new tablet x
I look forward to it.
Hi Kevin and Liz! Hope you having better weather than us! After a lovely sunny day on Monday we nothing but grey skies and drizzle. My husband Richard is very organized he works in accounts and numbers are his friends! So just before Christmas he came from work and said he got in the solicitor the next morning, to be honest I was shocked I felt too soon for me but I didn't say anything until he said very quietly we have to be there at 8.15! Numbers maybe his friends but mornings are not mine! So we did wills, power of attorney financial and health. I haven't done my advanced care plan yet. The nurse said last time that I was doing well, so no need to do care plan just yet.
Jeanette x
Hi Jeanette
That is impressive in one morning! Bravo.
You might want to get a little help with you Advanced Care Plan. It enables you to refuse particular treatments for particular illnesses. They do not allow you to positively choose treatments. e.g. If I have this condition I want to be treated like that.
A common thing people put on the Advanced Decision is, "If I contract pneumonia I do not want treatment with antibiotics." A lot of folk slip away peacefully with pneumonia.
This is one source for forms
compassionindying.org.uk/li...
Having said all of that the LPA for Health and Welfare trumps it.
You might also want to give consideration to a Do Not Resuscitate. Though you can write your own it is best to get the GP to issue one. Ambulance Crews and Medics have more confidence in a clinically issued one. The DNR kicks in were you to have a heart attack or other critical condition where medics. might step in to revive you. You need to have it handy so it can be shown in an emergency. Not everyone wants to go this route.
Yes, mornings are not my friends either.
I do wish you the best despite this illness. Liz and I still enjoy good times together despite the fact she is a long way down the line now.
Warmly
Kevin
x
Hello Mamapiggle,
So very glad you found this group and were able to post and present some of your initial questions. First, no matter how events unfold, know that you are loved and those that love you are always doing things in your best interest (you probably already know that -- but this is what I most want my mother to know!)
Re: this site -- I certainly wished I had found it earlier, it helped answer specific questions for sure, but more importantly it helped me feel not so utterly alone. My mother has CBD. She first showed symptoms in 2004, but did not secure a full dx of CBD until 2015. Her left arm started to show the first concrete signs in 2012 (she often held it folded in her lap as well).
I don't know if your husband (or your children for that matter) joining this group is a good thing or not for your situation -- but as the family member of someone with this condition -- I would recommend it -- (maybe read alongside you as you browse?).
So again, welcome; so glad you joined.
Marietta
Hi Marietta thank you for getting in touch. Everyone so lovely! I do the same as your mum with my left hand and when go out I always try to hide it because of colour which is blue! When I'm sitting at my dressing table I hold my left arm at shoulder height when I notice it I always think you my self why you doing that! I think daughter one but child 3 who quite strong may join us in the group. My husband read some of the post but he post anything himself. Xx
Welcome Mamapiggle. I'm so sorry you have cause to join us but you will find lots of information and support, warmth and understanding here. Everyone really cares. Keep posting. Thinking of you and your husband XX
Welcome to a group no one wants to belong to,you will find a wealth of first hand knowledge and experience.Rant cry,scream and ask away.You can do a search by going to the top right hand of the page ,under the more tab.
Dee in BC
Thank you Dee! That's what my friend said to me but I try be strong for everyone!. Only this morning my younger daughter who in Australia for 3months rang me up and asked about the group I just started to cry. I felt so bad I didn' t spoil for her she looks so happy in pictures she's been sending. I must say that I seem a lot my time saying sorry to people these days which is silly I know! I'm going on a walk soon with other daughter who lives down the road and do something with face wouldn't want frightened the little ones in the park☺lol. A couple of people have been calling me Jackie but my name is Jeanette! Jackie is the lovely lady who talking to me xx
Jeanette.
Not sure if this my place but I'm a kinda gal that needs to have all my ducks in a row.These are things that may help you if have not already done so.
Please get your health directive in order,DNR ( yes or no) peg feeding ( yes or no) any and all financial matters dealt with.
Do your research,do ask here,so many knowledge people here with first hand experience.
Try to stay ahead of this disease, meaning that if your low income look for resources that may help with,shower chairs, wheelchair, hospital bed and even a shower and or location of sleeping area if you are in a two level home.
But most importantly,take care if yourself.
Dee
Hi Dee,
I haven't done DNR as nurse said I was doing v well and she will come back at later date. I do not want to be fed by a peg, but not in writing yet. Husband works with numbers us v organised so helped sort out all financial matters, so at least one thing I don't have to worry about!!
Unfortunately I already have everything you mentioned except a hospital bed, and apparently they're hard to come by!!! I don't want to sleep downstairs in the future as nurse has suggested. House was on the market last year but when I got diagnosis we took it off as I didn't want to leave family home! But now wondering if I've made a mistake. I worry that where we would move, if that would be the right place for my husband when I'm not here ?
Jeanette x
Awww im so sorry my mum has had same struggles as urself shes fun lovin hard worker to suddenlu to be given this its awful evryone says mum looks good sges had it now 5 yrs her breathin isnt good so im constantly at docs she doesnt wanna know anything says stuff which she doesnt mean to say her left leg same side as her condiitiion is painful her arm and hand are basically there and in no use im so frustrated only 5 cases in north and south off ireland no one knows this cbd here doin my head in her speech is so bad at days she takes cannabis oil to help way that helps alittle but not long its so so hard i want my mum back this is how im feelin wot must she be feelin lack off help over here honest constant fighton battles please keep in touch ur story started off same as mums
I'm so sorry to hear about your mum and that she is not getting help she deserves, it's a big strain in you too do you have anyone you can talk to? How old is your mum if you don't mind me asking, I'm now 61! Do you find the cannabis oil helps, I haven't tried it myself. Where do you get it from, I've seen it in Holland and Barrett before.
Jeanette x
Mum is only 63 had this from she was 59 yeh holland and barret she also uses torren i think there called there vitamins her neurologist has put her on diff meds helps with her walkin ect she feels alot better on them although swollen ankles and legs with tabs so on a fluid tab which constantly has her to toilet her oxygen levels are down to 93 with no fluid in lungs or infecfion she gets so breathless on inhaler now also i want to try get her real stuff of it helps others surely worth a try only knowin were to go thanks for gettin in touch hope ur ok its frustratin cause no one knows wot this is even mum wont read up on it she doesnt wanna know and we live 50 miles from belfast only 5 in north and south off ireland gave this so so annoyin as people always ask hows ur mum i feel like screamin well sge aint gettin any better x
Sorry for late reply
I don't think anyone will really appreciate what you go though if you have a condition like this or what your going though as a carer! I saw someone I hadn't seen for years and she said are you well I answered but she couldn't unstandI what was saying so my daughter said that I have neurological condition which affects mum's speech. Surprisingly she asked if I would get better obviously she never heard of CBD! My daughter went doctors and saw one of older doctors and she asked him question from me and he asked what I had and when she told him he said he'd never heard of it. But this is at same practise my GP is, you would think they would talk to each other to make other GPs aware they have a patient with rare condition or incase they ever were to treat me. Unfortunately I had to go to A&E as I burnt my hand on oven the other day and blistered my finger badly, but surprisingly when I finally got through to see the doctor he had heard of it, he was Spanish! The staff nurse asked about it, so I gave her something to read that listed all symptoms etc so at least that's one more person that heard of it! Does your mum not have any nurses, does she get any help, physiotherapist or speech therapist, has she seen anyone other than family doctor and neurologist who diagnosed her?
Dr kearney neurologist from belfast city hosp he has 5 patients ive spoke with his secretary shes to get back to me over the course off 2 weeks mums oxygen levels are 93 her leg is in alot off pain her speech has worsened no one doin a thing i worry steady which has made me ill mum os a determined women cause she doesnt wanna know anythin i feel like screamin mum ur condition is causin this no help she wont let someone talk to her what she needs i do her hair for her as she can no longer dad shaves her bits as she cant but yest she was so crappit and told me off when all i do is worry i cant help it people dont understand there has to be other ways they own there home which will be no use soon as its not practical for her its unreal theres folk in this town get all adaptments for less does my head in my dad has to be exhausted i feel he will go before her hes still workin should be retired but his only way off out cause he calls in 6 times a day to check on her one day she says she cant the next she yaps wish use would let me alone her legs are badly swollen i feel its grapin her more now
Sorry i have a problem with my phone at the moment . I put ice cream and creamy yogurt in the Complan and on prescription from the doctor i got some energy drinks in various flavours. I hope this helps at least with the eating
Thinking of you XXX
Hi Mickyd38 I been wondering about you and your mum! How are doing? XX
Sinemet and PSP
A Little Success!
Missing my hubby
Yet another potential diagnosis??
