dear all, hope u are all coping, all managing to smile each day....
My mum Rosemary is currently in the national hospital for neurology at the moment, having ''tests''... what a relief as her sole carer and daughter that finally some docs are seeing what is happening. They have been very good, got her in more quickly than I thought, and have been very thorough, I am eternally grateful for the NHS, even though we all moan about it at times, how would we cope without it? It pays me too, so I am doubley grateful (medical secretary).
Student docs have been crowding round her bed end and doing all the usual ''tests'' - clap 3 times, look at my finger, look at floor, look up, look down, look to the side, checking for cogwheeling, can you feel this, can you feel that... they can see she has slowed eye movements but no gaze palsy and I think they won't say ''psp'' yet..., but how can it be parkinsons when a year since symptoms onset (balance probs, backwards falls, no tremor) she is falling now constantly and legs wont hold her up, she cant move/sit up in bed, barely walk....the SpR said the first day she was taken in, ''you wouldnt have been admitted to this hospital if you had straight forward parkinsons''...
I am very tired as I am going to the hospital every day. Supposed to be back to work tomorrow but they are now doing a dopa challenge and want me there.
Feel so sad too...but there are youngsters on her ward with equally awful neuroligiocal problems, one 18 year old sobs in pain waiting for her oral morphine dose every 4 hours......they can all draw some comfort from the fact they are not suffering alone....for what it is worth.........
much love to you all....
Clara
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clara
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When my husband was first diagnosed with Parkinson's in 2004 we decided to join their local Support Group. After attending their meetings for a year and having compared symptoms with many others it was very noticeable my husband was nothing like them. Amongst other things he didn't have tremors either. I had always somehow been convinced he didn't have Parkinson's and decided to look into other possibilties. I saw adverts in the PD Magazine for information about both PSP and MSA (Multiple System Atrophy). I sent for both and was absolutely convinced that Richard had got PSP.
I went to see our GP and asked if he would refer us to another neurologist, this he was glad to do. After loads of test and scans the new hospital were able to rule out Parkinson's Disease. The new neurologist showed me the brain scans on his laptop (I think he thought I was a nurse!) (I wasn't - I had just read a lot about PSP and knew the names of the different brain parts ). The neurologist said, "I think I have to agree with you. I do believe your husband has PSP". YES ! At last we had the diagnosis.
Looking back, if I hadn't followed my gut feeling would my husband have continued to have been treated as a Parkinson's patient - I wonder ?
My husband, Richard died by the way, a few months ago and his brain and spinal cord were donated to the Queen Square Brain Bank in London. It has now been confirmed by the Brain Bank that he most certainly did have PSP.
From the description of your mum's symptoms it does sound as though she has PSP. The advice I would give is, do read as much as you can about this condition. It will scare you at first, so you may find you only want to read a little at a time. Remember though, no two people are the same so things may not be so bad for some, as they are for others.
Thinking of you. Let us know how Rosemary gets on.
Thanks for your comments and comfort. Yes, like you Maggie, I too did loads of reading when I realised parkinsons just wasnt quite right, like you say, you know pretty quickly, and pick up on what docs say - the neurologist said last year something like 'be thankful we can treat PD, because there are other nasty illness we see which dont respond to the drugs''.... I remembered that, and when she didnt respond to the drugs, like you Maggie, I went hunting, and came up with PSP and MSA.
I am so sorry that you lost Richard. Many of us here on the forum are caring for parents, many for spouses...neither is preferable, but I wonder - is perhaps caring for the love of your life as they succumb to an awful killer as PSP is, is it just that bit harder than those of us caring for parents? You always know you will outlive your parents, you never want to lose your love of your life. But both is cruel and awful. Thank you for contuning to support those of us still battling...we appreciate it more than we can ever express.
Today, about 8.30pm, just as I was leaving, a learned doc (he closed his eyes when he spoke, he made me smile!) whisked through my mums curtains and asked for me to leave so he could speak to her....he allowed me back in a while later, and seems it might be they are thinking MSA, as she has low blood pressure probs....so they want to do more thorough tests. Basically its either PSP or MSA.
I think it may have been you Maggie who said in a blog/post somewhere that when that docs showed you the brain scan and agreed with you about PSP, you felt elated, and how ironic that was, to be happy to have suc a diagnosis, but I completely understand that. I think when you have been fighting for your loved one for so long,for someone to agree that something odd is going on, you are just so relived when someone agrees!
I too have been mistaken constantly this week for a staff member, they keep discounting my food in the hospital canteen, I have to keep telling them I am not staff! One lady insisted I go in front of her today, as she said ''you are busy - you have patients to see''...I was just laughing and couldnt argue, too tired to deny being a nurse!!! (I have also been given the phone to bleep people I have asked to speak to, and I know where to get the commode, sheets, towels...!!!) I do work in a hospital so I do feel quite at home, but it is a whole other world being a patient, time seems to stand still for them all on the wards....waiting to be told, waiting for a tablet, waiting to go home....
you r so bvrave and good 4 your Mum and i knwo willl deal iwht the diagnossi when it happens
I had a brain scan as originally the ENT thought it could b an ear problem )inner) but when i saw the second neuro I(paying to c him) he diagnosed PSP
Have u got a Social worker in advance of when you need some help like a carer coming in as, the nero not only told me about the PSP websitei but said i needed a frame to walk with /social worker/ see the OT (aiian_ a speech therapise/physio etc
i yook it all on board but it was a few weeks b4 anyone came near and i have had to re =refer myself ot each of he services each time i needed anything aparrt from he social worker
It makes sense to go fhe \careline pendant tschcemwe if you rmum is at home on her own in the daytiem and to get some care lined uyp for her
I find when my carer is iwit me i lall less often and she take me out to do lcoal shopping / to appts etc
So through HOme Instea Senior Care )recommmende don teh Psp website/ forum the same perosn comes eah day to help me
keep the good workk up
lovee jilll
xxxx
ps i am going to seee a neuro physio at the lcoa l hospital to hellp ,me with my falling problem
How I enjoyed reading your blog posting today. All those memories of the journey with Richard came flooding back.
I was looked on as another member of staff at Richard's care home and although I could have a cooked meal there at a reduced cost, none of the kitchen staff would ever take my money.The residents and staff all called me by my christian name and cheerily called out whenever I went in. It did my heart good to have so many lovely friends there; at home I saw no one. I would take over Richard's care for the 4 hours I visited and I did everything that was needed, including writing up his Day Sheets noting his condition; when he had his medicines; toileting, drinks, food and drinks, etc. I too knew where everything was kept, if I needed anything. Very often I could be found in the kitchen with Richard. He washing dishes and me drying or making tea and coffee for staff and residents alike. I would sometimes give Richard, a cloth to wipe the kitchen table or the kitchen work surfaces from his wheelchair (even though his eyes by then were tight shut). He loved the thought he was helping in some small way. It helped me cope with Richard's PSP too by getting involved and feeling I was helping others.
It was tough looking after my husband, but no more than it would be for anyone you were close to. Love is love after all and you do the very best you can.
Hope you'll continue to keep us all posted with news of your mum and yourself.
Thank u both for your posts, Maggie, I can picture you doing all the caring of Richard in the home and the home viewing you as one of the team, its lovely and how it should be, though I think you must have missed this terribly too when you lost Richard? It becomes your life and a double loss...very hard and you are so wonderful to keep in touch here to help those still journeying. I collected mum yesterday eve and she is now back home but with carers twice a day, she cant dress herself, or get a tea or food. Just a few more weeks and I will be living with her, I wish I could move in now, but not yet possible and move so iminent, we just have to cope a few more weeks.
NHS paying for 2 weeks of carers and then i have to start paying (well, mum does). Jill what was it you were meaning about home instead of senior care - I really like the idea of the same person coming in everyday - much nicer isnt it as you can build a rapport with that person, instead of a different one every day - thank you for this info, please tell me more if you are able. I am going to try and apply for continued care, I know she may get turned down, but at least we get into the system and can re apply in a few months? Jill have you applied for this too? Maggie, did Richard get this? It alll seems so bewildering, this care business, knowing who to get in, how much they will help with, how much it should cost....any info from you all greatly appreciated.
It does seem that mum has multiple system atrophy (MSA) as opposed to PSP (awaiting seeing Prof Lees again now after her discharge for his formal opinion), but as one doc said, they are ugly sisters to each other, so I will still keep in touch with all my new PSP friends. MSA seems to give more bladder problems and less swallowing problems, but all so similar in many other ways.
Love you all very much for your support - mum sends love to you all, and when she is living with me we'll try and get her to write a blog herself.
As Jill says in her comment below you may be able to claim Attendance Allowance if you haven't already done so. You can fill in the claim form online. I would certainly get in touch with your local social services and see what help they can offer. It may be worth you claiming Carer's Allowance for yourself too. Even if you are not awarded the money immediately you can establish whether or not you have an underlying entitlement which could help in the future.
You may also be able to claim a discount on your council tax if there is a room adapted solely for the use of a disabled person. Check your local council's website for this information.
Social Services are obliged to do an assessment for you as a carer and for your Mum. They may say that your Mum needs to pay for care services depending on her financial situation but they should be able to put you in touch with a reputable agency. Social care these days is all about personalisation of care so they may be able to advise you on how to employ a Carer yourself to ensure that you get the same person coming in day after day. The benefit of this is that you can decide what they do and do not do unlike some support where there are limits on what tasks they will undertake.
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