Good evening
My mum was diagonsed with psp about 2 years ago. My dad been struggling with looking after her turned to drink and I've given up work to help out while my lo at school. It doesn't help that she type 1 diabetes. I want to take her out to socialise as she talking about wanting to end her life but as I don't drive I don't know where to begin. I just want to talk to people who are going through the same and ways to give the best of life while she still got it. I live in the uk
Get a social worker involved, sounds like you need help, your dad needs to have some outside space, and of course you do as well, having to give up your job, must of been a very difficult time for you. Please get your social worker involved, if you don’t have one, get one as soon as possible, phone them and tell them you are both struggling, my husband, when he was alive went to a centre twice a week, which gave me some me time. Sending you a big hug. Yvonne xxxx
Thank you for getting back to me she has one but they don't know who they are or got contact details so have emailed them. I think if she meets people she can talk to will make her feel better. She had a councillor come and they want to get her out to a day center but have had no news of when yet. It's only been 3 weeks since I've started looking after I've manage to get her out to the park and to the shops my dad can't take her out as his leg bad and she in a wheel chair. She a bit more happier that I'm about but I think it's because I'm more calmer and can get her out as my dad would send her respite every few weeks for 2 weeks. Sorry for the long reply but need to speak to people who understand she currently in hospital as she was shaking as a leaf but as they don't know if it's normal for her condition they keeping her in
If you don’t hear anything soon get on the backs and tell them you can’t cope, you need to cry, they done like it when you cry, also go to the doctors and tell them you are struggling, cry again, it works wonders a few tears, you are not lying about anything, you just need them to sit up and listen, you need help, take everything that is offered to you. I struggled with looking after my husband at times, the lovely people on here kept me going, don’t forget we are all here for you. PSP is such a horrible illness xxxxx
I've only just found this group and think I be using it lots for worries just want my mum to have the best life she can. She hates her doctor and refuses to go to her hence why there so many ambulance at her house and she won't open up about stuff. She loves professor Morris her consultant as he listens to her and he specialise in it but you only get the routine appointments but if I'm concerned I do email him and he gets back to me on what I should do
Prof Morris is an amazing doctor, my husband was under him, Dr. Lamb she is a wonderful doctor as well, I am sure he will do what he can to help you, there are other people on his team that could help you, speak to the PSP society they are marvellous. Go see the doctor yourself and explain how your mum is and how you feel, they can really help you. Yvonne xxxx
Thank you and I am so sorry I never gave my condalnces to you for your husband I am sorry x I've don't think I've meet the others but yes every time I have meet him he seems very concerning and wanting to help as much as he can. Tbh I never liked the doctor my mum with when I lived at home she not very good I've had better experience with the doctor I am with now
Agree with jean go and see the doctor they can help you. Fingers crossed for you, thinking of you all. Yvonne xxxx
Try contacting your local hospice.
Chris went to a day group there which he enjoyed. X
How do I do that
Your GP can refer you but you could just go and see them and find out what they offer. It varies. They are supportive. X
Thank you I'll have a look into it tomorrow
Dear River89, I am in the same position as your Dad and my wife is nearing the end of her time. I have found that Hospicecare and Marie Curie have been fabulous in their support of me and Mary. Sleep deprivation affects me although Mary sleeps through the night. Even so I have a night sitter occasionally from Marie Curie which enables me to recharge whilst they watch over us both. Your Mum is ill and her care should be monitored by her GP and the District Nursing Team. They will assess when her symptoms progress to the state whereby you, and they, can begin the CHC funding process. Social contact and normalcy have definitely contributed to Mary surviving as long as she has. Your Dad also needs support. Hope this helps. Rob
Have you got a Parkinson’s nurse. Once we were referred to her she really opened doors for us. Craig got to go the the local Marie Curie once a week for a few hours, it gave me sometime for myself but also Craig got a change of scenery. Having said all that it was t Craig’s cup of tea and only went 3/4 times - I knew it wasn’t for him but e gave it a go. It’s a shame that you have to do all the leg work to find out what’s on offer. Make sure also you are getting all the equipment and or adaptations that mom will need and you can do that my contacting you local authority and request an OT to call out if you haven’t already. Speak to DIAL as they maybe able to help you claim the benefits you are entitled to. As a lot of health care professionals are not sure about PSP you need to be very clear on what you need. Good luck always here if you need to share or ask as are everyone on this site as we are going through it or have been. Keep going you are doing an amazing job xx
No she doesn't have a Parkinson nurse I think I need to get in contact with the go she has her bed and comode downstairs and can get about inside with a frame. She is still fine at eatting normal food. I may email Marie cutie then see if they can help out. Thank yoy
Thank you going to have a Google today and see what I can do
I agree with the others you need to Involve social services district nurses and doctors they are there to help I have managed so far with my husband but after three years it is getting more difficult today he is at the local hospice which he really enjoys and it gives me a much need break good luck with everything
On advice from her consultant my Mum's GP referred a Parkinson's nurse. Like Unicorn, once she arrived within days a team of OT, SALT and hospice care was put in place. The hospice nurse has now arranged for a volunteer to visit Mum once a week for a social call. Good luck!
Thank you my sister has informed me that she does have one but never meet them think I'm gonna have to call her gp about it
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