Family not being sensitive to parkinsons


#1

My hisband was diagnosed with early stages of Parkinsons earlier on this year. Apart from his left hand tremors he has also changed in personality. My husband gets very tired especially since starting his medication. My closest sisters lack of empathy is really upsetting she seems to think I’m making up how he is coping and that he should be lucky he didn’t get parkinsons at an earlier age! Is this something others are experiencing? If so please advice on how I can educate her to understand. I need as much support as possible. MI st of my other siblings and closest friend understand and give support.


#2

Hi Anoushka1,
Welcome to the forum.
Sorry to hear that you feel unsupported. Please feel free to get in touch with the Parkinson’s UK advisers on our helpline service on 0808 800 0303 if you need to talk to someone. We are confident that our forum members will also reply soon. If not, someone from the Parkinson’s UK moderation team will respond when they can.

Best wishes,
Edwina
Moderation Team


#3

Hi

I really sympathize with you. My hubby is still in denial stage, has not had a confirmed diagnosis and sadly he still is selective in who he tells. His friend ( the only one he has told) hasn’t mentioned it since and told me he can’t accept it. My father in law knows, but is very dismissive of it and, makes out its no big deal and says hubby is a worrier and needs to pull him self together ( not a nice person) . My hubby flares up quickly, is forgetful and wants all his own way. Please don’t think I’m a winging wife, believe you me, I am not. I love my hubby dearly and due to hubbys past heAlth problems( of which he has had loads) I have put my life on hold.
I really feel for you, my parents know,but hubby does not realise, as they have there own worries and he didn’t want them to worry about him.I had to tell them as I need an outlet myself. My son and his girlfriend know aS they live home but hubby things he hides it from them.My hubby has resting tremors, frozen shoulder, leg dragging, groin pain, stony face, slurred speech,prostate trouble… loads going on sadly
My hubby is also young only 48.


#4

@Concerned1, I so understand and empathise. This is so my story. Watching my 52 year old husband struggle with the impact of PD, the stony face with no smiles, slow movement, low mood bordering on depression. Most of his siblings haven’t been told, most of his friends don’t know, thank the Lord his employer has been great and have even been a support to me. This is such a hard journey and we’ve only just begun. For 30 years my husband has been my best friend now it feels like I’m losing him :(:disappointed_relieved:


#5

Hi Anoushka1
Unfortunately I’m not sure you can educate people to understand how debilitating parkinsons can be unless they want to be educated. A lot of people still think it’s just a bit of shaking and have no idea of the mass of other symptoms and how debilitating they can be. Also because our symptoms can vary so much from day to day it can lead some people to even suggest that a person with parkinsons is “putting it on”.
Fortunately there’s lots of help, support and advice on this site and it sounds as if you some other supportive people around you which it lovely.


#6

Hi Anoushka1

Yes like Daffy has said not everyone will can can understand the way Parkinson effects us, my family members well some think I am putting it on and others thing when the weather improves I will get better. It is so sad at a time like this we feel that we need to explain and slow them how we are feel and what we can do, but even than they have no idea. But most importantly you need to put your self first and take care. I really don’t know of my family but yes the people I have been talking to on this forum have been so good, they are underwear Of how much they have been helping me, even if I don’t write on here reading though the forum gives me support knowing that some one out there knows what and how I feel. Thank you all :pray:


#7

Hi all,

It’s really heartwarming to see all the messages of support here. Unfortunately there are still a lot of people that lack general knowledge and understanding of Parkinson’s which is why we did a campaign called ‘Unite for Parkinson’s’ in an effort to raise awareness on the complexity of Parkinson’s and to shed light on our research. You can find it here, https://www.parkinsons.org.uk/news/complexity-parkinsons-massively-underestimated-uk.

I encourage anyone that is struggling to get their friends and family to understand Parkinson’s to refer to the link above. Also, if you need someone to talk to, we have information on how to get in touch with a counsellor here, https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling.

Hope you find this information useful and the very best to you all.

Best wishes,
Reah


#8

Hi Reah

Thank you I have looked at this and it is good, but can I ask how do you tell and talk and explain what Parkinson’s to 15 & 16 with autism why Mum fall asleep with food in her mouth all of a sudden or when I have fallen down as I couldn’t judge the side of road I really am great ful you have helped to shown others that there is someone who is willing to give five minuets there time to read and listen to them.


#9

Hi @Raz1,

You’re welcome. :slightly_smiling_face:

There’s a page on our website on how to speak to children and teenagers about Parkinson’s which I think will be really useful to you. You can this section here, https://www.parkinsons.org.uk/information-and-support/talking-children-and-teenagers.

Best wishes,
Reah


#10

Hi Reah

Thanks for that I will have a look and really gretafull for advice

You take care.x


#11

I find it so comforting to follow this thread - thank you. My husband was diagnosed nearly 3yrs ago (although on reflection quite evident before). We have two daughters of now 15 and 17yrs, it wasn’t easy to tell them, but one thing I do know, is that awareness is key. It’s never easy but perhaps for them, dealing with change and not knowing why would have been even harder - and that, selfeshly includes me trying to protect them. My husband is 56, and is in denial, and I’m 53, and we struggle to make things how they were - we need to learn, appreciate and understand, that things are different, but that doesn’t make them bad/wrong, whatever… … it’s not easy, far easier said. Ladybird52 I can really understand, watching the battles and change before your eyes and Raz1, every support, 300% behind you and if I can offer anything, please let me know, we have to learn from each other.
I’m rambling …:slight_smile:


#12

…sorry, learn wrong word!! Not learn, more like throw ideas, thoughts in the pot x


#13

DPalm you could never be accused of rambling, you are expressing your feelings which is not such a bad thing on here as you are sharing with others who are in the same position. Everything about Parkinsons is a learning curve and this Forum is great for learning from others in your position. It is good to make your family aware of what your husband is going through and get them to understand that it is not the end of the world just the start of adapting their lives around him. It will work out, you’ll see, give it time.

Les


#14

Hi completely empathize my sister was my best friend too, but since hubby’s pd has progressed she has withdrawn , I still see her but infrequently and she doesn’t support me. My dad also had Parkinson’s and watching hubby go through the same deteriation could be hard for her. My main support comes from freinds we have made at our local Parkinson’s group try and join even if you only go once you’ll find they understand
Sending best wishes