My husband was diagnosed February 24. We had no idea. I think we are both still in shock. He won’t have speech therapy, physio or any kind of support. He was still working at the age of 77 but had to stop as he was a Taxi Driver. I feel our life has just fell apart, the happy life we shared has gone, it’s like living with a stranger. I suffer from anxiety and dizziness, which my GP is investigating slowly. I am frightened for the future. We had never put Legal matters in place when I tried to explain that we need to address these matters, he doesn’t want to know. I have no family support; they live in England, and we live in Scotland. It’s just the two of us.
That sounds incredibly difficult and it is understandable to feel shocked and frightened after a recent diagnosis. You do not have to go through this alone. Our helpline team can talk through support options for both you and your husband, and give practical advice around speech therapy, physiotherapy, and putting plans in place for the future. You can reach them on 0808 800 0303 or by emailing [email protected] . We are here for you.
Parkinson’s UK Moderation Team
Hi @skinny74 I feel for you both.
As Rhea says give the helpline a call, they are amazing.
Are you in touch with your local Parkinson’s group? Or your local Carers Support group?
Simon
Hi Simon
Thanks for replying sadly my Husband won’t accept ant kind of input or help. He is a very quiet private man and just won’t get involved. I have spoken to people at Parkinsons UK .There arre no local groups near where we live. I don’t drive it all just feels to much’
@skinny74 that must be so frustrating.
But what about you? Has anybody spoken to you about options for supporting you as a carer?
I think the system is slightly different in Scotland but you can still approach adult social care yourself as a carer And ask for their help to support you even if your husband don’t accept any help.
As a carer in Scotland you also have your very own support organisation that you can speak to for advice and guidance
https://www.careinfoscotland.scot/
It’s okay to think about yourself and your needs.
Hi skinny,
It sounds like he hasn’t come to terms with the diagnosis.
Have a look on YouTube for videos on therapies that can help.
In particular the keto diet and Parkinson’s, also intermittent fasting.
Red light therapy is another therapy aka photobimodulation.
There is exercise programs for Parkinson’s that help tremendously like walking.
He can do these therapies at home in his own time .
There is a lot you can do to help yourself if you research , don’t give up.
Thanks for your support. He is in denial,I try to be gentle when explaining things to him that we need to address. He just ignores me or says yes later.He just does thngs to suit himself
Hi Si
I have been told unless he has an Assessment which he doesn’t need yet I don’t qualify for support. I am just finding everthing overwhelming. I have terrible Anxiet I feel I am not getting the support from NHS.
Hi Lar
Belive me I have done everything I can read so much looked on You Tube, spoke to Parkinsons Nurses. It hurts me so much its like he has just given up. I think he is frightened of the future but sense is just not prevailing.
Hi skinny 74. We live in scotland, and my husband was diagnosed in 2016/2018. He initially took the diagnosis in his stride…which was not severely affected at that time, and has been able to drive these last 9 years. You havent detailed your husbands symptoms? My hwp has been on madopar for 9 years, and was still driving without issue until recently. I personally have found information is key to reducing anxiety levels. I too have health issues, but who doesnt when we enter the 70s age group. Finding ways to manage whatever symptoms you both have will help reduce anxiety and might help your husband feel less traumatised bybhis diagnosis. Life is not over, there are many ways symptoms can be helped. You will see from many posts within this forum how people cope on a day to day basis. My husband has never read a post! But i read them to him! Over time he became more optimistic about how he would cope. I dont go to any groups, i seek my own i formation, make phone calls if required. Its not the future you hoped for, but you can adapt your lives to make them as happy as you can within the new circumstances. Dont get me wrong, its not been plain sailing for either of us…but we are plodding on. Focusing on what we can do, adapting life to cope with any challenges. I hope you feel less over whelmed soon. I have experienced feelings like that. It will however get better in time.
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Hello everyone,
My name’s Oliver Bennett, and I’m currently working as a Biotech Researcher. Most of my time is spent exploring how science can be applied to improve healthcare and sustainability, but I also enjoy connecting with people outside the lab to share ideas and learn new perspectives.
Looking forward to being part of the discussions here and getting to know the community!
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Morning Oliver and welcome.
Best wishes
Steve2
HI Iappreciate your reply.
My husband at the present time isn’t open to any input or help he is quite mobile although his walking is bad ,he gets tired very easily and his mood is low. I have looked into lots of things that could help. He is a quiet private man and tells me he just has to get on with it.I wanted to try to get a short break he says he couldn’t cope with the driving. I dont drive.
Have you had a look at nicotine patches they are useful the protection of the brain cells and can help stem cell growth I believe.
Dr Clarke has a video on pd and the use on nicotine patches.
Also coconut oil helps with neurological conditions.
He needs st change his focus to research if he can , I am sure he would improve very quickly.
Hello Skinny74
I see you have received a number of replies but I sense that although you apreciate that, it has done little to help you feel less overwhelmed, fearful for your future and so on. Believe it or not, but I promise you it is true, the feelings you are currently experiencing are entirely normal, many on the forum will be able to see themselves in what you have written,
Also although it probably feels like an age since your husband got his diagnosis, seven or eight months is not long in Parkinson’s terms. It is a long road and both of you are barely off the starting blocks. I don’t say that to scare you even more rather it is so you know that neither you nor ypur husband need to do everything all at once. Everyone has to come to terms with their diagnosis in their own way and in their own time. I know you have his best interests at heart and you are doing everything you can to get him the support he needs, but maybe it is just too much for him to think about support groups, assessments or whatever and this may have led him to dig his heels in even more. That is not a criticism of anything you have tried to do, you’re as lost as he is but you can see ways he could get some help and it is probably very frustrating for you that he is basically saying no to everything and that doesn’t help you manage your own feelings. Taking it all together it’s not hard to understand why you feel the life you had has gone and in it’s place all you can see is a life that is no life, no pleasure in it, no fun, hopes and dreams dashed and your relationship with your husband now feels like a relationship with a stranger.
I’m not going to insult your intelligence by sugggesting living with Parkinson’s is easy. It’s not. If I had a way of getting rid of my Parkinson’s I would. On the other hand nor is it the end of the world unless you choose to see it that way. However it does take some getting used to and one way or another most people eventually find a path through the early tangled mess and find a way to live with Parkinson’s as part of the mix. Almost all, if not all of us here on the forum have gone through the sorts of things you and your husband are doing at the moment and have lived to tell the tale and come out the other side. What I can’t tell you is how long that will take because it is for your husband to find his way and you too.
So wheere does that leave you? First you must look after yourself. You seem to have some health problems of your own so it is important you give yourself some priority - if your health breaks where would your husband be then?
Second iI think you uave to box clever. By that I mean use a less direct approach, and just keep a foot in the door, take opportunities to mention the sort of support he could make use of but do it almost in passing and don’t make a big thing of it - plant the seed and let it grow. It may take time but it can bear fruit if you are a bit creative with how you bring things to him - especially as you describe him as a private man. And if going away for a break feels too much for him what about a day trip on a coach, or just going out for coffee and a walk - no pressure, no talk of Parkinson’s just to enjoy each other’s company.
I don’t know how useful you will find this but I hope it has helped a little. Take is slow and steady, come to terms with your own feelings, look for ways not to see it as one big dark hole down - reading some of the other posts may help you to see things a bit diffferently, and remember you don’t have to do everything all at once, Take baby steps like going out for coffee and a walk - a perfectly normal activity that doesn’t have to stop because of Parkinson’s, just go out and enjoy each other’s company - that could be your first step up the ladder to living with Parkinson’s.
I wish you well and the forum is here 24/7 if you need.
Tot
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I Nearly 2 yrs since diagnosis and you are still in shock? You both need to see someone together to talk you through this diagnosis and be able to move forward. Until you do you will just keep going round in circles.Has he been seen by a Parkinson’s nurse? He seems to have made 2 friends Apathy and depression . They often come hand in hand with Parkinson’s and they need to be addressed You haven’t said
timezone=“Europe/London”]id what input the GP has had or indeed a Parkinson’s nurse.Is he on medication yet if so what? Some Parkinson’s meds are mood enhancers and can help enormously.
If you suffer anxiety this needs to be addressed too it won’t go away on its own and you need to be strong for both of you.Try to live one day at a time ,focus on what he can do and what he enjoys. You mention speech therapy and physio but does he need them yet. Exercise is as important as medication and getting out together for a daily walk can work wonders.This diagnosis isn’t the end. It is the begining of a new chapter in your lives A cup half full or half empty? If you haven’t talked to anyone together then ask your GP to refer you for counselling. Even a bereavement counsellor could help.Please don’t give up on him or yourself ,there are still good times a plenty believe me .My husband was 63 when diagnosed ,he’s now 77 .weve had many ups and downs, seizures and prostate cancer but still live life to the full day to day.
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I know how you feel. My husband was diagnosed several years ago and gave up, took to his chair and refuses to go out. He is on a catheter which has its own problems. He is a sweetie, very good-tempered and puts up with me, but I feel lonely a lot of the time. We too live in Scotland, and we are lucky we now have lovely carers twice a day from the local authority. We have o family locally either. I recently lost my driving licence but hope to get it back as the loss has created additional stress for me. Can I tell you how I have coped? I developed an interest I can lose myself in for a few hours, which has nothing to do with domestic duties or anything remotely related to caring. It has kept me sane. It will take time to get the help you need, but it comes eventually.
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Thank you so much I really appreciate your reply,it make a lot of sense. I had a bad weekend with my dizziness problem,GP’s having problems coming up with solution. But I know I will get there.
Thank you for reaching out,there is no handbook to guide you through this massive change to your life style. I thought we would have got more support.but find you have to find it for yourself. I to feel very lonely.