It’s really lovely to see our members come to you aid. Please remember that you are never alone and we have our forum and helpline (0808 800 0303) if you ever need to speak to someone. I agree with @Knine, I think our self management programme would help you significantly. Our self-management programme is designed to help you navigate your life with Parkinson’s. The aim is to share experiences and discuss the practical and emotional impact of Parkinson’s. There’s more information on this here - https://www.parkinsons.org.uk/information-and-support/self-management-programme.
There are also 365 local groups throughout the UK which are run by our volunteers who usually have experience of Parkinson’s. These groups welcome family members and carers, and some involve health or social care professionals. There’s more info on this here - https://www.parkinsons.org.uk/information-and-support/local-groups.
Wow hubby what beautiful reasons for fighting and making sure you don’t give up , they are so lucky to have you in their life’s and I am sure they are so proud of you for not giving up, well done and keep going
Hi Hubby, I think a lot of people feel uncomfortable talking about pd because they know so little about it. You can do your bit to educate them. Explain to them your daily troubles and how that makes you feel. Perhaps they are scared of finding out just how bad this disease can get. All I can offer in the way of advice is say, take each day as it comes and enjoy that day. None of us know what is round the corner. You cannot live your life worrying about tomorrow. Put your boots on, go out and enjoy this beautiful summer we are having.
Hi Hubby I have 2 really good mates when I was diagnosed they stuck with me to the point where they both borrowed a book I had called Brain Storms by I think author is j parminter it really gives good understanding of pd I got mine from amazon hope this helps noticed the lfc shirt I, ve been supporting them since 1970 YNWA
Pete
Ditto in feeling, the self management programme is very good. Helps by connecting one with others in the same boat. I started a journal and wrote everything down when I felt alone, stressed, lots of new emotions. Basically it cleared my mind and helped me live another day. I’ve now found a creative side via it. Talking and recording your thoughts is another way. What ever works for you really. What floated my boat as a child was still there at 50 I just forgot about it through life. My door of communication is always open to anyone. As said, self management a good start, help line number too. Happy to chat with anyone, via any form. Keep chin up, so good you have your little Grandson, their a blessing arn’t they!
Hi H, so sorry to hear you feel so alone. I have supported my husband with PD for 16 years. What people don’t realise is that you both go through the grieving process, shock anger, disbelief, depression and all the other stuff associated with it. One is only alone if they wish to be; I don’t know what area you live in, but the Association of Carers offer volunteers to either visit you, or phone on a weekly basis. Samaritans offer a listening ear and the British Red Cross, along with many other organisations. It has to be up to you to make the first move, once you do that, you will start to improve. Although my husband has had a stroke, I still get him up on his feet to dance as best he can. He still tries to play carpet bowls and does exercises every day and plays dominos. How can those close to you understand how you feel? They are dealing with losing the person they once new; understanding comes through the experiences we have and once all the emotional stuff is out the way then you can start over rebuilding your lives together. Good luck and keep smiling.
Hi. I urge you to find your local group. I know it’s difficult to see others in various states of PD but believe me, once you get chatting, you understand that you all have similar issues. As they say a problem shared is a problem halved. I volunteer in my area, and we are all an extended family. We go on outings together, go out for meals. We share the ups and downs together. We will try to get family involved too. You do not need to face this alone !!!
To be fair why would anyone know about PD unless they or someone dear has it. You see lots of articles where people are doing things for charity and 9 times out of 10 they are raising money for a cause that affects them personally, not usually a random cause.
I knew nothing about PD until I was diagnosed but now I want to give things not to the British Heart Foundation charity shop but to a Parkinson’s charity shop as it means more to me now.
Come to think of it I have not seen a Parkinson’s charity shop in Brentwood or nearby, anyone know of one as I am moving house and getting rid of lots of things, books etc and have 3 bags filled already.
Hi it does seem like a lonely battle, I go to a group and have a good chat,as well as doing a bit of exercise, I also attended one of the self management programmes, which was very good, the group is well worth it, I travel to get there, but it is worth it I will have a chat with you.
To Hubby and all on here, we are all here for each other and although we live in our virtual worlds on here it is a valuable means to share experiences and understand our frustrations that this condition brings. I am not sure what personal details we are allowed to share but I wish I could meet you all face to face and build up a band of ‘Parkies Pals’, this is a name I use locally in my village and has truly brought sufferers and carers together. I am very open about having Parkinson’s and friends and family are amazing and supportive. I really try to keep positive easier some days then others of course but wish I knew where you all were for a big Parkies Party
I argued with my daughter who is living with us with my grandson today.
She was complaining about me be slow to move when my grandson was doing something dangerous. I snapped back that she should learn something about my condition.
Her reply was that I should talk to my family about my illness.
Ouch!!
Hi I really think you should try and set up an appointment at home with pd nurse that you can all attend you all have to pull together or it will tear you all apart if it helps show them my post I, m the 9th member of my family with pd so I do have a broad knowledge of pd and what it can do to families I urge you all to try to get some help good luck
Pete ps contact me any time if you think I can help
