Just my view

Living with Parkinson's Daily life
1

I have just been reading through “The Parkinson Autumn 2018”. It appears there is nothing in the way of help for those of us with severe hearing loss. Almost everything we do, relies on hearing. From morning to night, there is constant sound from something.
Sound is information. You can learn a lot from the kitchen radio if you can hear it. To me its a constant distorted noise. I often wish I could throw it out of the window, but then my wife wouldnt be able to hear it. Self control is another thing you learn…

There are over ten million people in the UK, who are hard of hearing, or deaf. It is not necessary to exercise to music, but simple conversation is almost impossible if you cannot hear.

I have a moderate to profound loss. There is no hearing aid, that will make me understand in a group of people anywhere, Lip reading is also very difficult if your sight is poor. Going to the theatre, can be a waste of money. Some cinemas do have subtitles, but parties, be they Christmas or Birthday, are a nightmare.
I have had thirteen years of this, and you can understand why some people shut themselves away, not wanting to meet others. This, we are told, is bad for us, and can cause depression, and other unwanted conditions.

Fortunately, I do go out. Communication is very difficult, and involves a certain amount of guesswork, and luck. You find other people do not understand your frustrations, and do not know how to help, and often they cant. Its your mess, and you have to get yourself out of it.

So my Parkinsons, apart from affecting my walking, and trembling hands, is really nothing to worry about- im glad to say, and I do not think about what the future could bring. Hopefully, thats a long way off.

2

As someone who has spent the past 5 or so years adjusting to hearing loss, caused I believe by chemotherapy in my twenties, I have every sympathy and understanding for what you are saying.
David Lodge’s “ Deaf Sentence” is well worth a read, both for sufferers and their hearing families and friends
Thank goodness for the internet which means that people can communicate regardless of hearing ability or any other difference that would colour the recipient’s view of them or response.
I think it is the change from being hearing to hearing impaired, whilst continuing to live among hearing people that is one of the biggest difficulties. Until every child learns sign language, the two communities are going to have this massive gulf separating them. Did you ever see the film “ children of a lesser god”? Brilliantly wrestles with this issue… times are a ‘ changing thanks to various campaign groups , not to mention technological developments with hearing aids and associated equipment , but it can be slow progress.
Like so often in life, we have to focus on and enjoy what we can do, not what we can’t…but so much easier said than done, esp when it is something you used to be able to do.
You are not alone that is for sure.
Best wishes, Pippa

3

Hi Pippa.

Thanks for your reply.

I agree with your comments. The Internet is often the only way to communicate. I have not read that book, or seen the film. I will have a look round.

I didn`t learn sign language, because until everyone uses it, you are still on your own.

Technology has come a long way, but hearing aids are still just that! Hearing in noise is the biggest problem, and although there are adjustments, they don`t work for everyone.

So we must struggle on, and do our best. Nice to hear from you.

Regards. John.

4

Hi- my husband was diagnosed with PD about 6 years ago and he is 51 years of age now. I feel that we both have changed since his diagnosis and I don’t have much family support from his side of the family. He works full time as for now- but I have notice that husband has change quite bit in terms of selfishness … only wants to do things for himself cause he feels that he may wheelchair bound one day… I have taken on more tasks at home and emotionally I feel lonely. He does not want to plan for the future or talk about it but only wants to serve his direct needs. It’s condusing sometimes and we don’t talk much about his his PD- we are not close physically - sex life is rare now - he has back pains now and I’m just physically exhausted taking care of daily needs of our 3 kids and making all major decisions. I think he avoids talking to me about what I go through and or gets angry with me when I talk to him about our future together. Could you help me., is this what I should I expect - I don’t feel loved or support .

5

Hi @Gremlin2018,

A warm welcome to the forum and thank you for being so open about what you’ve been going through. Even though your husband was diagnosed with Parkinson’s some time ago, a diagnosis can still be a shock to the system which could explain his recent behaviour. Neither you or your husband should have to go through this alone which is why our support services is here to help you.

As well as the forum, you can connect with your local adviser or local group to speak to people who understand what you’re going through,we have more information on this here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons. We also have a confidential helpline that you can call and one of our friendly advisers can offer you more info on the emotional support that’s available to you. Feel free to give us a call on 0808 800 0303 or email us at [email protected].

I’m sure you’ll receive some words of encouragement from other members on the forum, however, I hope the info I’ve shared is helpful.

Best wishes,
Reah

6

Thank you so much - I’m in counseling he is aware of it but does not wish to go to one. It’s quite sad sometimes for me because I feel as though I’m married to different man. He doesn’t show any signs of emotions. He acts like nothing is wrong… he doesn’t want to talk about living will or even when he can longer chew food and bed bound - would he like to have Gtube… he gets angry with me ! Insist that will never happen. It’s like he is angry with me or maybe even feels sorry for me because he knows that my life maybe physically and emotionally and costly to take care of him. His family is denial - they don’t want to talk to me about it - as matter of fact the moment he was diagnosed with PD they began to treat me poorly - they stop coming to our house. His mother blames me for his disposition in life.

7

Hi Gremlin,
V brave of you to share so much about how tough it is for you, and made so mich worse as result of lack of support and/or understanding from family members. It sounds to me that a lot of people around you are in denial , which is actually understandable the PDdiagnosis, not to mention the fact that if one denies, and avoids, then one doens’t Have to do anything and face reality. You don’t have that luxury , given that you will be carrying the can in future,if you stay the course. No wonder you are anticipating and wanting to plan for what is to come, to prepare yourself for it…except that we can never in fact know what is to come, because something else might happen.
Given such uncertainty, it is really hard, I find, to get the right balance between living for the day and doing what one can whilst one can, and planning for the future, especially in practical and financial terms .
It can also be difficult, if not impossible, to prevent the disease from taking over one’s whole life, smothering any other interest, activity or conversation, but it cannot be allowed to do that. And I speak as a carer of someone with quite advanced Parkinson’s ( my husband)
.my husband is the one who looks ahead and see all kinds of horrors lying in wait for him, whilst I tend to say, we will cross those bridges if and when we get to them. Sufficient unto the day is the evil thereof, I am told!
We should all be writing down our wishes for our end of life care, or whatever, not just those who already have a serious condition…but we don’t because to do so makes it real. Maybe that is why your husband does not want to talk about it. Maybe for your sake and peace of mind he might write something down somewhere and be done with it.
I wonder if any two people, when partners In this situation, one with and one without the condition, can ever go through the process of dealing with it simultaneously. Like so many challenging life events, we all go through them at our own speed in our own unique ways, and when that clashes with how others close to us are doing it, it results in distress and even conflict when people take thier frustrations out on each other rather than on the condition that has brought the situation about.
No easy answers that is for sure, but talking about it and wrestling with these issues can help, if only to help one realise that one is not alone, and that it is very normal to have such thoughts and feelings.

Warm regards,

Pippa

8

Thank you Pippa- I’m trying very hard to take care of myself and find joy in working and helping people and my kids. There are moments when it’s hard for me to not think about the future - sometimes I may have anxiety attacks over it and find it hard to sleep… but for the most part I try to enjoy the simple things - decorating and cooking. I take care of our home now and try to anticipate problems that may arise. I try to be understanding