Hi my name is Julie and I was diagnosed in 2014 at the age of 50 with Parkinson's Plus. I was told that my actual diagnosis was more than likely Cortical Basal Degeneration. I'd never heard of this and neither had any friends or family. All I have learnt has come from Dr Google !!!! Because it's different to "normal" Parkinson's I have to explain as I don't have a tremor as people expect. I walk with my arm across my body and my left foot inverts.
It would be good to hear from anyone with the same diagnosis.
Written by
EFGS01
To view profiles and participate in discussions please or .
Hi, Julie - Dang that you're here in a way I don't know anything about CBD but you've landed in a good place for help and understanding. - Godd Luck!!! - Alicia
OMG Julie I am Rebecca I'm 47 and was diagnosed last year with cortisal basal ganglionic degeneration I have tremor left side chronic pain I'm my head left side lol not I'm left side dominate and it's effective that dude I have since developed internal epilepsy and lewy body where are you please I'm in Sydney Australia
Rebecca I'm in Kent in England. You have so much going on - I get a lot of pain down my left side and since January this year, I have been in a lot of pain with my hip and knee.
I'd be interested to know what meds you are on if you don't mind sharing ?
I take Sinemet 4x per day, Controlled release Sinemet 2 at night. I also take meds for reflux - due to the muscles in my throat weakening and meds for high blood pressure and some for anxiety.
I am sure I sensitive have rejected madapar 125my siferol and neuropro patch 125 my my last chanc you was 125my siminet 4 times a day also keppra 500my twice a day and a barrage of heart supplements I now have stupid stare spaces aka internal epilepsy tremors and I'm speech impaired and sadly that's just the start but I'll fight for this dammed disease hope ur fairing better than me kind regards rent I'm in Sydney Australia
Hi, Julie. Really sorry about your diagnosis. You are so young. We seem to be seeing more folks here with CBD, so you ought to find the connection you are looking for. My guy had PSP and this community helped us in many ways, with good, factual advice and friendly, loving support. I hope you find what you need here, too. Best wishes, Sarah
My husband was diagnosed with CBD in 2016 and died shortly after. No-one here recognized the symptoms before then. Pleased it is being more recognized as you now know there is a reason for the problems that are troubling you.
My love's symptoms go back to about 2010, and were not recognized as being indicators of anything. I just thought it was part of him aging faster than me, or traits he had all his life getting worse - and more annoying!
Hope this early diagnosis for you gives you chance to do your bucket list of desires before it becomes a challenge.
Thanks Jen. Sorry for your loss and thank you for making contact, which must be difficult at times.
There is a bucket list ! I retired early from work this year and so far I've visited New York - amazing ! Also rode a horse for the first time and visited London Zoo for the first time since I was 3 !!!
I do try and stay positive but as you know that's not possible 24/7
I particularly like the ''and more annoying'' phrase. In our case, i am the one with PSP but before diagnosis I was 'annoyed' by my husband's tendency to give in to advancing years and, to me, it seemed as though he revelled in it. He has been so supportive of me since I was diagnosed that I feel guilty for having even thought that way, but still do get cross with him!
Hi Ann, I can relate to that! From my view as a partner, I could only see an increase in previously annoying traits he had always had! All was explainable because of his wartime upbringing. We had a good marriage, but it was not perfect as we never really opened up to each other. When I tried to discuss a family problem, he was not able to consider emotionally from either side, even tho he was a great scientist! It ended up in a shouting match, and I usually went off in a huff! He was kind, generous and loving, but frequently frustrating and aloof!
I see my oldest son with what seems to me a perfect marriage! His wife has taught him how to deal with family problems, and he has listened! Am sure they still have "moments" as he has both parents' temperaments.
So don't feel guilty! Feel blessed!
When I stopped bitching (!) in our last year together,it was because I could clearly see he was suffering from a brain misfunction each time he did something annoying, and I asked him why he did it. Then began the explanations, my assistance and interaction with medics to find a reason I was sure was there, yet he never asked, or seemed to want to discuss it.
I felt I needed to shelter him from what was happening at the end as he seemed unaware of changes then. I even saw the happy, jocular man I had married back with me! But by then he had lost his later memory.
We had a lovely peaceful, fully cognizant Xmas just the 2 of us since no family member invited us out and we didn't find it easy to entertain.
I am grateful for that time! I have felt very guilty,but after a year, I feel sadness I spent so long not being more understanding! But then - it takes 2!!
Give your husband a BIG HUG from me! Make sure he reads this site and signs up! You both have the time to understand what is ahead, and to form a united front, and there are so many amazing role models here to help you both along the way!
Welcome to the site! I am the carer for my dad who was diagnosed with CBD Jan 2016. He showed symptoms for probably 3 yrs before being diagnosed. He lives with me so I have first hand knowledge of the path CBD has taken him. A piece of quick advice is keep notes on anything you think happening is odd, neurology appts tend to be months apart and it's easy to forget something.
Ron I agree neurology appointments tend to be months apart I start my getting symptoms In 2014 Many neurologists dismissed me saying it was all in my head while mean while my gut told me som you was wrong I follow ed my instincts are and was diagram for last year my thoughts and pra you are with you
I have the same diagnosis and we too had no idea what this was. You are welcome to talk to me. Im not sure if I can help you but maybe it would be comforting to speak to someone going through the same things. Im sorry that you are in this position.
Bless you and thanks. I find the physical symptoms tiring enough - the fatigue is unbelievable, but the anxiety and changes in my personality are harder to deal with. I would be more than happy to stay in touch to support each other x
I also struggle with anxiety. I used to be fearless. Now a change in routine or even an unexpected visitor or just a quiet evening can trigger anxiety that I didn't even know could exist. Things that used to be easy or even exciting now cause me to be anxious or cranky or demanding or overwhelmed. Being exhausted I can deal with ( sort of). The shaking and mobility difficulties I can mostly adjust to but the changes to who I am, how I relate to people, are crippling.
Oh you have summed me up ! That's EXACTLY how I feel - when I was working, I managed a team in a fast moving environment, making snap decisions and dealing with difficult situations daily. Lie you, now if someone tries to factor in a change to plans I've made, I can get very anxious. I hate that change in me and I feel as though my self confidence and self esteem are non existent. Oh I do try but I've even lied to friends to get myself out of social situations that not so long ago I would have been the mainstay of. I totally agree that this part, for me, is worse.
We are going out tomorrow evening!! At least, that is the plan: the hostess has just phoned to check that we are going and, of course,I said 'yes' and that I was really looking forward to it. In reality, I know that I'll dither about it as the afternoon draws on.
The event is the annual summer party for a group of lovers of the Italian language and of Italy itself. We began as groups of people who didn't necessarily know each other who signed up at the local further education college to study for A level exams in the language -- a 2 year course. As each course finished, many who did not want or need to take degree courses but who didn't want to lose their knowledge, were able to join, for a reasonable fee, a post A level course which ran indefinitely until the funding of further education changed and the college could no longer host it, whereupon one of the members who is a landlady of a pub which she and her husband own said that the course could continue at the pub and it is still going. I joined this group after taking the A level exam - it was still at the college then and remained a member for some wonderful nine years. (stopped attending when the mobility problems made it too stressful to get there on time). In 2007, we had the first 'field study' trip to Italy. That was the title chosen to justify the cost and absence from home to husbands/wives who might have objected. These trips, in reality a chance to thoroughly enjoy ourselves in a country we all loved, became annual events, each time to different cities (although we did stay in Verona twice). I haven't been able to travel with them since 2013 when we had a wonderful stay in Perugia but have kept in touch with everyone throughout.
SO, I MUST GO; these are special people and I'll really enjoy it once I get there but I know I'll have to fight myself tomorrow as the evening approaches in order to resist the temptation to just stay at home!!
She was diagnosed with it last tear becore doctors were thinking thats Alzheimer ,its been a year that she cant stand on her feets she got more dependent on prople around her
Hi jùlie. Time line I am about the same. Diagnosed with Parkinson's in 2013. But diagnosis changed to cbd early 2016. Like yourself I keep my arm by my body holding onto my clothing. I went to a psp association meeting yesterday, for the first time. Found it really helpful
Thanks for your reply. I'll have to find out where my local PSP group meets if you found it useful.
Do you suffer with fatigue and has your personality changed ? By that I mean I can no longer be spontaneous, avoid social gatherings and suffer with anxiety and sometimes panic attacks.
My wife aged 58 has CBD diagnosed Dec 2016. Her right foot inverts and she now has pain in it when she walks - called dystonia (helped by orthotics and Botox). She does not have a problem with her arm. But her right hand is weak and her right eye is closing. Generally seems to be a problem with the right hand side of her body.
This is a really good forum. I find it so helpful.
Strange ,im reading the comments i can see that some people have the same issue as my mom ,her right feet inverts,although shr cant walk for a year i tried my best to take her on treadmill but she doesnt have any balance or control on her body
It was suggested to me to try and go swimming or even do some very basic excercises in water. Maybe that could help - or if she can't swim what about a hydrotherapy pool ?
I took her to the pool 4,5 times before ,she was really scared,her vision's gone she cant focus while watching,my mom is 65 yrs old,lately i mean since 13months ago she's on wheelchair
Thank you I will. We need all the support we can get. It's hard for friends and close family to understand at times, especially I find the changes to my confidence and personality.
I so get what your saying its tough my speech is really effected and can't tie shoes any more family don't get it well mine don't my hands lock now to but do you K or or gave you leg freezing sorry my little ones typing this yes he's amazing he's 9 computer savvy as
Wow he's a special little boy. That must be so very hard for you - he's had to become so grown up. A lot of the time I just say " I'm ok" when others ask how I am, rather than go into a long out pouring of how c**p things are.
My main issues at the moment are my walking, standing for any length of time and fatigue. I struggle with getting in and out of the bath, putting shoes on - have to wear supportive shoes now - lace ups or ankle straps due to my foot curling in.
Don't feel that you are alone - we may be separated by miles but not minds x
Thank you I so get what your saying telling everyone I'm OK when I'm not my walking is a problem my left leg freeing a lot and the pain in my face this awful disease had Robbed me of so much and uts going to fast it's meant to be a slow process but it's not I get tired very quickly but my pain and muscle spasms drive me nuts I'm optimistic though un the mirror It's like staring at a girl and I used to know she looks a little like me but a stranger as well my tremors are bad today but I still use on attempt to smile for my Beau and little boy take care Rebecca
I know how much I've changed since diagnosis. I do the same - look in the mirror and I see me but a shadow of the fun loving outgoing person I used to be. You are not in this alone - what meds do you take ?
This is my list :
SINEMET 4 X PER DAY
CR SINEMET 2 AT NIGHT
ROPINIROLE 1 DAILY
These along with Citalopram for anxiety, reflux meds.
I take sinmet 4 times daily1000my leprosy for my epilepsy 1000my 11 super strength magnesium a woman's multi depression tablet and 1 iron tablet and immunity tablet cause I can't get the flu jab since I had a stroke in 2014 and more the sinemet Tues's my last hope it has worked my pain is an issue as I allergic to so many meds
Never heard of that drug had restless legs under control with the iron tablets yet since ivr been on sinemet it's come back worse than ever I'm over it all ready seeing my neurologist this coming week asking hard core questions like no more meds I'm done with them then let my palliative docs take care of my pain and symptoms management better pain control equals hopefully more movement better quality of life I'm sitting in the wheel chair falling half a sleep so cold keep warm
Julie, hello, my husband Ian was initially diagnosed with MSA, but they have now concluded it is CBD, Ian has had it for 11 years, so cannot walk or do anything much for himself, but he is still very interested in what is happening around the world, and watching the tennis at the moment, he went through a terrible phase about a year ago, very depressed and not talking at all, angry and lashing out at myself and carers, in general being a pain, but he is now over that thank goodness, and we have a private male carer who comes in every day, we have moved to a bungalow so we have access to shower etc, the OT department here in West Sussex are great, Ian didn't get along with madapar, so we didn't take anything for a long time, but he was in a lot of pain, so was taking paracetamol, oramorph, you name it, but our neurologist has put him on a painkiller,which is a slow release called Gabapentin.
The PSPA website publishes the calendar for the support groups, there is one every month at Worthing, may be a bit far for you though.
If you want to ask me anything I am here for you, it is a scary place at first, and I use every support I can, especially the lovely people on this site, I find the hospice community team good too, although they can only give you small time slots for the day centres it is well worth speaking to them
Thanks so much for your reply Janet. It's really important for me to find out how a carer for someone with CBD copes. I always have to know exactly what is wrong with me, to the extent that I have Googled anything and everything about this condition. I read about the life expectancy, symptoms etc and I am dealing with that. I don't know if it's a man thing but my husband deals with it on a " Well and if that does happen " basis. Rightly or wrongly, I choose what I tell him if I'm having an off day. in my mind I'm protecting him.
I'll have a look at resources nearer me - we live in Rochester in Kent.
I take co-codamol for pain - but your husband's pain sounds worse than mine. The anxiety and panic attacks at times seem far worse - for me at the moment - and that's what I struggle with more at the moment.
Jule the panic and anxiety attacks are tough I get crank very easily where before I took everything in my stride I take it home by hour someways my speech is so bad I just don't talk my son and me have a special way of communicating through when that happens
I've just spent the last 2 hours at a party in a friends garden - very relaxed gathering. I really felt for my husband - sitting by my side asking if I was ok. I could wallow in this self pity but try and snap out of it.
You are amazing - you are obviously having a tougher time than me and you must be so proud of your son bless him.
I do hope I'm not making you feel low by going about these flaming symptoms.
We may be separated by miles but I am only at the other end of a key board.
Thank you again so sorry for your loss glad you feel like he's watching over you take care reb and yes my son is just 9 and it's hard for me knowing I never see him get married be a grandma but I treasure each minute with him I can't turn my head to the left any more or do my adrenaline sport which I miss take care bless you
I used to live in Gillingham and knew Rochester well, drawn there by the castle and cathedral and, more recently, by the Dickens connection. Small world!!
Where in Gillingham? Posh or not posh/ above or below the High Street?
We were definitely not posh, lived below the High Street, in a road off James Street. Not too far from Pier(?) Road which lead to the Strand where i used to pend so much time in the summer months in the swimming pool.- fed by sea water then and not modernised at all. Happy Days!!!
Julie, my sister has had CBD for 8 years and is 67 now. She was diagnosed at the Mayo Clinic 6 years ago. At first it was stressful and confusing for her but the doctor told us that once her brain got used to this new normal then she would adapt. She has adapted and is calmer now. At first your body wants to fight the changes and that is exhausting.
You have made the same movements thousands of times and now they are different. The anxiety is the rest of your body being confused by the new movements. Your body will eventually adapt and get easier for you to move.
It's the same thing with people. Some people will adapt to the new you and still know that you are the same person inside. Some people will fight the changes and have a harder time with it.
My sister is not on any medicine for CBD but she is on aricept.
Her body is more relaxed now and the caregivers take care of her body now.
I just found this site a few weeks ago.
Be strong and continue to do the things that matter to you.
Thank you so much for your encouraging words. I had never actually thought about it in that way : both with the movement and with others. That's really made me think.
Julie your story reads like mine do you get leg freezing my hallucinations have backed off for a bit thank goodness but my left side is week and right side starting to become the same hang there stay in touch Rebecca
Yes I do and yesterday a couple of times I went off balance. It's only my left side but every twinge ache or pain I get I think has it started on the right side.
Hope a great day my tremors have given me grief today and a couple I times I to am off balance do you have trouble getting in and out of a chair when that happens I use my Canadian crutches or my son helps me necks a pain but it's a damn disease
Yes I do and also turning over in bed, getting in and out of a car as well. I have got a walking stick to use as the pain in my hip and knee is sometimes unbearable but I'm being stubborn and not using it as much as I should
I know that feeling turning over in beds a problem and getting in and out of a car my left legs a real prob however you refuse to give in to it stubborn as that I m take care Rebecca
Here is hoping your feeling better may we please keep in touch gnaw my neurologist and had a big cry as my cbdg is progressing to fast first my palliative Doc increased my rivitrol to help with my spasms sleep and seizures now neurologist has increased my sinemet keppra increase again for seizures and a leg freezing tablet to so over it fight the fight as you know is exhausting but I have my kids and partner so I've got no choice take care Rebecca
Of course we will keep in touch - feel free to contact me whenever and as often as you need to. We can support each other. It gets me down when I think 3 years ago I was on 2 tablets per day - now I'm up to 12 - it's hard to be positive at times. I know this will only be a matter of time and there'll be more another sign of this " thing " trying to take us over.
Here's hoping you have g a great day despite the odds against us felt so stupid my leg froze at the grocery store and lucky my partner caught me he's taking me shopping every Friday and him and another man carried me into his car enjoy ur weekend
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I don't know anything about CBD but you've landed in a good place for help and understanding. - Godd Luck!!! - Alicia
New Diagnosis and Struggling
New
New to PSP
dad new to PSP need advice?
