I've just found this site and I'm hoping it's going to be a great comfort to me. Looking through some of the other blogs on here, I'm already feeling a huge sense of relief that this website exists and that there are people out there that can relate to how I'm feeling (though obviously I wish that no-one had to go through this).
My mum has suffered from Alien Hand Syndrome for as long as I can remember, well over 30 years. However she has deteriorated considerably over the past year; having no balance, falling over, coughing constantly, forgetting words, unable to write the simplest of words (like my name), getting very confused about everyday things, getting lost in previously familiar places, fretting about the tiniest of things, losing her voice, getting more and more jittery in her arm and shoulder etc.
She's been seeing a neurologist for a couple of years about the Alien Hand Syndrome, then just before Christmas she said to me that the doctor gave her a new name for the condition… Corticobasal Syndrome.
Me being me, I looked started doing some research on this and have been in shock for the past couple of weeks. I'm obviously devastated at everything I've read and the horrific way her future is looking. But the fact that my mum is seemingly oblivious to what is actually wrong with her is so upsetting. She has no idea. She just thinks that she has a 'posh new name' for the Alien Hand Syndrome.
I feel so utterly confused and shellshocked about it all. Dealing with the diagnosis and knowing what is going to happen to her over the next few years is making me so stressed and upset (as well as incredibly angry), but the fact that my mum and dad are in the dark about it all makes it all the more difficult to deal with. I just don't know what to do, and to be honest I feel like I'm cracking up about it all. I can't stop crying and I can only just face getting up and going to work everyday. I've not told any of my friends and to be honest have been pushing them away so I don't have to see them, which would lead to me telling them when they see how wrecked I look. It's almost like if I say it out loud to someone, it becomes real. At the moment it feels like my secret and I just don't know what to do.
I'm considering trying to get in touch with my mum's doctor and asking what exactly she has said to my mum, but I can't see her talking to me due to the patient/doctor confidentiality thing.
I know my mum had a visit from a speech therapist last year but she only ever went to see my mum that one time. I'm trying to get my mum to get the doctor to send the speech therapist again but my mum says it's silly and she "doesn't want to take money out of the NHS for no reason". She clearly doesn't know how important keeping her throat muscles as strong as possible is. How do I get this across to her without telling her of her impending future.
I'm sorry to have rattled on for so long, but as I say, I'm falling apart and just don't know what to do. I don't even know if my mum's doctor knows what she's dealing with. As far as I know, she just received a letter from the neurologist stating this condition, with no other information.
If anyone has any thoughts they could share with me I would really appreciate it.
Thanks very much.
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Jan6
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Sorry to here about your Mom. Life just isnt fair sometimes. You need to take care of yourself as well.
I go to all of my Dads appointments with him. You could get your Mom to sign papers that allow you to discuss her condition with or without her being present, I have done that! My Dad has PSP, for about 8 years now.
As for your Mom not knowing the severity of her disease, trust me, she will get there. None of us wanted Dad to know, but I think he is grasping it now. Neither of us wanted to tell him for fear he would go into a deep depression or just give up altogether. I think slowly over the last 18 months, he has come to realize there are no treatments and that while we are trying different medications and therapies, the end result will be inevitable. I have come to terms with it, my Mom is slowly getting there. Just take your time, do what you need to do for your Mom and yourself. Does that make sense for you? Hope it helped.
Thanks for your words. Everything you say makes perfect sense. I guess with me only being around 3 weeks into knowing that my mum's condition is as serious as it is means I'm only just starting to come to terms with it. It's all a bit of a shock!
It means a lot just knowing that there are people that I can talk to who can relate to my feelings.
I hope your dad is doing well.
Thanks again, your response has made me feel a whole lot less isolated
I can understand the shock and grief that you are going through. Please do take care of yourself though and talk with one or two trusted friends. The old saying 'a problem shared is a problem halved' is definitely true in this case.
Mum's initial diagnosis was a 'parkinsonism' and Mum and Dad used to refer to her PSP as 'Parkinsons'. We usually let that stand when they were talking to friends and family. One of us (usually my sister) has been to most of Mum's appointments since she received the diagnosis. The PSP Nurse has been great and you may find it helpful to talk to the Nurse responsible for your area; you can contact them through the PSPA website (pspeur.org). The nurse may also be able to contact your Mum's GP with more information or you could print the info from the website and take it in.
As MJ said take your time coming to terms with this and please come back to this site. We can empathise here as we are all living through something similar in one way or another.
but have researched it on the internet / jpoined the Psp assoc and am upbeat as it explains so many of my health problems
i agree with Hmfsli hta t atroubel shar ed is a troubel halved and do not think there is anyh point in nto sharign your mum's illness with others - some of whom will nto wnat to listen
It is always such a shock to hear such a diagnosis, this site and PSP site really do help. I have never told my husband he has PSP, he, like everyone else wouldn't know what it is - same as so many of the population. Social Services were such a help to us both. The PSP info pack is also a Godsend. Take care of your self
Wow, thanks everyone. I'm really REALLY glad I found this website. All your comments have really helped me. I feel a lot less 'alone' now. I'm off to see my doctor tonight to get her perspective and see if she can contact my mum's doctor. Also I told a friend last night, and you were right - it was very cathartic to unload onto someone.
I'll definitely be sticking with this forum, it's already helped me and I've only been on it for a day.
Hi Jan, it's hard isn't it but you sound strong and there's a lot of support out there.
Once you are able to speak personnaly to your mum's doctor (maybe just write a simple letter from your mum stating that in future she gives you permisssion to discuss matters with her GP and get her to sign it) ask the GP for a referral to social services. Once your mum has a social worker ask for a referral to a speech therapist, a physio, and a Parkinson's nurse (they see PSP and those with movement disorders). And join the PSP association, they have a wealth of information and help. The carer's pack is brilliant.
I've said on this site before that one of the hardest things on this steep learning curve is saying things out loud because then they're true but honestly, if you can do that it's such a relief and there is help.
I didn't tell my husband about everthing that might happen, just that the PSP had affected his walking, memory etc. In a way his being affectedly cognitively makes it easier because he never gets frustrated or angry or stressed.....that's left to me!!!!! Speaking to the professionals might help you decide how much and when you are going to tell your mum and dad.
Whatever you decide make sure YOU are OK because your mum and dad are going to need you a lot in future. Get the family and your friends on board because there are going to be lots of appointments at home and at the docs and hospital in future.
One of the hardest things I found was accepting carers into our home, first one in the morning and by now two, four times a day. I still hate it but there will come a time when you or your dad just can't manage. Take all the help you need because in the end it saves your health and your sanity.
Hi again, ask for an occupational therapist as well. There are all kinds of aids and gadgets that they can recommend to help your mum around the house. Good luck.
Thanks Sheila. Your words are not glum or hard at all. It's good to have someone advise me to 'do this, do that' as I feel utterly clueless at the moment.
I think the hardest thing (apart form the shock of the diagnosis) is that my mum and dad are blissfully unaware of what the future holds for my mum. How do I even go about starting to tell my mum that she has a limited time left to live and in that time there's a strong possibility that she will end up semi paralysed, with a feeding tube. It breaks my heart thinking about it and I just do not know how to even begin relaying that information to her.
I really need to get in touch with my mum's GP and see what she knows and what exactly she's told my mum. But without giving anything away to my mum I can't see how I go about even getting permission off mum to speak to her GP as she doesn't know that there is anything more sinister on the horizon. Oh it's all so confusing.
At least I get to see my own GP tonight to gain some insight off her. It's a step in the right direction.
I can't really add anything to what the others have already said but just wanted to add my welcome to the site. You will find it is a huge comfort to know that you are not alone in this. You will find that someone will always respond with words of comfort or advice.
Thanks Kathy. I'm already comforted by all the kind words I've received. It's astonishing. Up until yesterday, before I joined this forum, I felt like the only person in the world going through this, so everyone has really helped to calm me down. The future seems ever so slightly less daunting now, which can only be a good thing.
The one thing you'll find out from this site is that you can pour your heart out about anything, because we all understand. We've either been there or we are still on the journey.
I agree with everything that has been said so far and especially from SheilaN. Firstly though, please allow yourself to grieve. I can remember when my late-husband was told he'd got Parkinson's Disease, and then 'Parkinsonsim' we both sat and cried and cried. It took a good while - like months in my case - to accept the facts. Then I woke one morning and felt tired of my defeatist attitude as it was getting us nowhere. I became determined to find out as much as I could and fight back.
First of all I contacted the PSP Association and asked if they could send me their Carer's Information Pack. This covers both PSP and CBD (Cortical Basal Disease). That was the best thing I could have done. Suddenly there it was in black and white, not only everything to do with the disease(s) but all the information and help I would need in the future. Within days I was telephoned by their area Specialist Nurse who just chatted, as I cried.... She was so lovely and such a calming lady. She assured me I could ring her whenever I felt the needed help or advice or even if it was just feeling down. Through the PSP Association we joined their nearest PSP/CBD Support Group (which are dotted around the country) and I learned so much from fellow carers as well as sufferers who attended.
I also saw our GP who referred my husband to a Neurologist, then to Social Services, and he was soon assigned to a Social Worker. We had a visit from helpful lady from the Dept of Work and Pensions who advised us on what benefits we could claim. Later came his Speech Therapist, then he got a place at a Day Centre, and also an Occupational Therapist gave to see us and helped us with safety features around the house, hand rails, bed supports, alarm mattresses and other kinds of helpful gadgets.
It is a long road Jan and it's not always easy. Some people with PSP or CBD want to know the facts others don't - only you know your mum and dad best. With my husband he always wanted to 'know his enemy' that's way he could cope with things and for us it worked. I held nothing back, but chose my words, shall I say, 'carefully'. Richard sort of resigned himself to whatever came along. He never seemed to worry too much and had a kind of calmness about him.
Read as much as you can Jan too, because many health professionals still don't know much or anything about CBD or PSP with these being relatively 'rare' diseases (although this is now becoming a matter of opinion with more people being wrongly diagnosed as having Parkinsons Disease). You may find that in future YOU will be the one explaining CBD to a doctor as they will have no idea what it is. Wish I'd had a £20 note for the number of times I've had to explain PSP to a doctor or nurse - in about three minutes flat! It was like learning a script.
Good luck Jan, and don't forget, contact the PSP Association first before you do anything else and tell them you suspect your mum has CBD and that you would like to join the association and be sent their Carer's Information Pack - it's free to join for sufferers, carers and their families.
Thanks for you words. I really am so grateful. I will definitely be signing up for the PSP info pack.
It's all just so much for me to process at the moment. I'm just in shock. My mum was such a vibrant lady only a year ago and now she's so confused and bewildered by life, has no balance, cannot cope with phone conversations and I can see her deteriorating every week. Last week she had to ask me how to spell my name and then looked really puzzled when I told her J-A-N. It's heartbreaking. She is aware that she's confused and gets frustrated by it, but she is clueless as to her future. I believe she would want to know, but I cannot see my dad coping with the news.
At least I am making headway, seeing my own GP tonight for some help and hopefully for her to put me in touch more legitimately with my mums GP.
Thanks again for taking the time to write to me. It means so much.
Welcome to the site, though I'm sorry you've needed to find us.
The info and support from the PSPA was invaluable for us- apart from just being able to chat to somebody who knew the condition. One thing we did was copy some of the information and give it to my mum's siblings and friends- so everybody knew what was going on, had a reference, and we didn't have to keep explaining.
Like many, my mum often didn't understand what was going on, or recognise dangerous behaviours, but we really appreciated the glimpses of herself, her strong personality, that would still shine through.
Look after yourself, shout at us, and gather all the support you need around you
Thanks for getting in touch. I've been to grateful to everyone that has. Hearing from people has greatly improved my emotional state this week
I've just filled in my application form to join the group and I'm sure it will help me feel like I've taken another step in the right direction when I get the info pack.
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