joined a couple days ago but can’t work out this forum format so here goes nothing.
don’t really know what to say. diagnosed in 2021 after developing first symptoms in 2016. several major life changes since2018 , caregiver for 12 years, bereavement, returned to work, lost my job, the pandemic, financial circumstances etc . . . you get the drift.
since diagnosis no help, useless medical support and treatment, everything out of control and drowning not waving.
Hi Lavenderblue,
We are sorry to hear things are so difficult of late. We will not minimize what you’re feeling, but we can tell you that you are not alone. Our forum community, sure to begin introducing themselves soon, can assure you of this. They are a wise, friendly, diverse and talented lot with loads of general and practical advice to share.
We would also encourage you to feel welcome to call our helpline. It’s free and confidential and staffed with kind, knowledgeable advisors who can help you find local resources, answer medication questions, and just lend an ear. They’re a truly wonderful lifeline about whom the community have only good things to say. Please don’t hesitate to reach out to them on 0808 800 0303, as you like. You may also wish to have a look at our website for our other support services here: Our support services | Parkinson's UK.
We hope you’ll feel a bit better as you get to know the lovely community here, as we offer you our warmest welcome.
Jason
Forum Moderator
1 Like
Welcome Lavederblue you have come to the right site we are all in the same boat here (for want of better words) from your post you do sound a bit cheesed off, Please /Please don’t let it grind you down. I know it’s hard but do give Parkinson’s UK a call I have always found the very helpful and do keep posting get it off your chest and moan as much as you like there is always someone out their who will help.
Hello lavenderblue
Welcome to the forum so sorry to hear life is feeling a bit ontop of you at present. Please use the helpline they have dedicated helpers who can give you lots of information. They will be able to tell you if there is a local to you support groups close to you. They can help with checking if there is financial help you maybe entitled to.
If you are unhappy with your medical care you can ask your GP to refer you to a different Parkinson’s specialist for treatment. You may want to consider searching for centres that have the mark of excellence for the treatment of Parkinsons and ask to be referred there.
Anxiety and depression are sadly part of the Parkinson’s package, if you think these might be impacting you your GP or Parkinson’s team can help.
Hopefully things will settle some for you - very best wishes Jane
thank you for your replies. after Jason’s recommendation I phoned the helpline and was spoken to so badly that I ended up hanging up and phoning the Samaritans instead. Although unable to offer advice at least they listened to me. Maybe the man at the Parkinson’s helpline was having a bad day, who knows? the way he spoke to me and what he said has disillusioned me and I am considering deleting my profile on here.
Im so sorry to hear you feel unsupported by different people during your current struggles. There are so many posts and pieces of advice here within the forum . You might find something specific to your main concerns if you use the search icon ? I often come in just to read what people are going through, even though its not me, but husband who lives with condition. I find it helps me a lot. Dont give up on the forum. We all have days worse than others, but people here really to understand
of course you are right, and thank you. I know we all have bad days but a representative of any organisation should not bring that into a phone call where the caller is looking for support. I was made to feel worthless and a time waster. Two other people at the hospice where I attend once a week were affected by the same issue that I was addressing. The people on this forum seem to be far more understanding and considerate than the call centre employee.
Hi lavenderblue, i just wondered how things were with you? Have you managed to get any more help or support.
Best wishes c
I’m sorry to hear that things have been so tough and that medical support hasn’t been helpful. Have you got any help?