Do you think his PD has something to do with his attitude? Other than just general anger at the disease. So hard for you having to deal with a job and child(ren) at home too. Moan all you want, I certainly would be
Hi my hubby was diagnosed in 2019 and initially I was so optimistic that I would be able to adapt and adjust. However I’ve just slowly gone downhill as my hubby has deteriorated. It’s more his memory issues that chase the problems. I eventually reached out to Parkinson’s UK as I feel as though I’m drowning. I am also far less tolerant and hate myself for constantly shouting and have recently started throwing things (not at him). I’m waiting for cardiology appointment as my heart rate has started to flutter and reach high readings. I need to find out if I have an underlying problem or if stress could be the cause. That’s why I need any help or suggestions as to how to manage our situation. As we don’t have children I’ve also started to worry about what would he do if anything happened to me. Sorry to go on and on but any advice would be very welcome. I do belong to a local PD group but they are generally just a social group which hubby isn’t keen on. Thanks for reading.
We just wanted to welcome you to the Parkinson’s UK forum. We’re sorry to hear things are so difficult at the moment. Just know that you are among people who understand, many of whom you are sure to hear from soon. Please be aware we have resources that can help on our website at Parkinsons.org.uk, as well as our free and confidential helpline at 0808 800 0303. Our advisers there can assist with a range of issues, everything from medication questions to mental health resources for People with Parkinson’s and their carers, so please don’t hesitate to reach out when you can.
Please accept our warmest wishes and welcome,
My husband was diagnosed about 3 weeks ago. He had been deteriorating for a couple of years and I found myself losing tolerance as well. It is awful to have that guilt as well, I know. It is difficult to keep optimistic in the face of it all. I think.a lot of people worry about the future whether they have children or not. I think the only thing we can do is take it day by day and look after our own needs. We don’t know what will.happen and worrying doesn’t help. I haven’t tried the helpline but I may well do in the future if I feel the need. I’m sorry you are having a difficult time x
Hi Lizzy, joined this forum today. My partner got diagnosed in March this yr a week before his 60th Birthday. we also struggled in lockdown trying to see his Dr face to face. Finally managed to get him an apt and she sent him for a scan and an assessment. Scan was clear which he thought was a good thing but I knew it wasn’t.
The specialist diagnosed him within half an hr which shocked him but not me.
I threw him a him a big surprise 60th party(already planned before diagnosis) he surprised me as he told alot of his friends that night and i was so proud of him.
He started meds straight away and is starting bk at the gym. I think it’s me struggling more at the moment with stress rashes on my body so need to sort myself out to be able to deal with all of this as want to be able to continue to help him as much as possible xxx
It’s only natural that you are struggling it is such a big shock to have our husband’s diagnosed with PD. It is all very new for you, new to me too really being 5 months in. I’m still struggling at times but like you I want to do all I can to help. You know this diagnosis doesn’t mean our lives have to totally change, our husband’s are still the same person. It’s great that your husband has told many of his friends and family, after all that is the most difficult part. You need to take all the time you need to come to terms with it all. Take each day as it comes. PD is such a slow progression and each person with PD is different. Live your lives as normal and don’t let PD rule how you live your lives.
Always here to talk. It’s good for me too to chat with wives of newly diagnosed. X
Morning everyone how you all doing?
Well my husband is 6 months into his diagnosis and has yet to find the right treatment for him. He has been on senimet for a month and its almost like it has not touched the sides. No relief what so ever, no side effects at all. It really is like he doesn’t absorb any drugs. However he is still very positvec and is carrying on as normal. We recently did a 10 mile hike and he is in the process of building a very big summerhouse in our garden. Or to admire him really.
Hope you are all doing well.
That’s great Lizzy. We have an appointment with the PD nurse on Tuesday, hoping that his tablets can be increased as his tremor is bad again. It is two steps forward one step back.
Your husband sounds very proactive. Good on you both.
What drug is your husband on? We are finding my husband tremor is no better on sinemet t, if anything it is worse. He takes 12.5/50g, 3 of those 3 times a day. I think his dose needs increasing too!
We are not always so positive as the tremor really annoys my husband at times. I have down days if his tremor is bad because its not nice to see. I do my best to get over it. I think my problem is now we know the diagnosis I tend to look for symptoms.
Good look with the PD nurse, let us know how you get on.
Hi Janey and Lizzyg, my husband is also on Sinemet and has been for 6 years since the day he was diagnosed… It doesn’t do much for the tremor and initially the consultant also prescribed trihexpyhndyl. He was on that for about four years but didn’t seem to help much and with the side effects including memory problems, we decided to slowly wean him off it and he no longer takes it. He now takes 125/100 Sinemet 3 times daily and 8mg of Ropinerole once a day. Although his tremor does get us both down as it’s such a visible reminder of this wretched disease, it’s the other symptoms like extreme slowness of movements and thoughts, bowel and bladder issues which cause so much stress if we’re out and most recently the delightful drooling he’s started to do while his head is down as he dozes in a chair in the day. I must admit I’m having a bad day today with it all and feeling so bitter and sad about why he was ever diagnosed with PD. So vert envious of friends same age living normal lives. I am finding it harder to keep positive and lately I’m even starting to feel trapped and just existing not ‘living’. At the end of the day, even if you have a family, for 99% of the time you’re on your own to just get on with it. Really sorry for such a negative post and hope you are all having a much better day than me. Jean
Hi Jean 1…
My thoughts are with you…I can relate to everything you say. My husband and I had plans to " travel the world" in a camper van when we retired…oh! If only those dreams had been able to come true…my husband took early retirement due to the PD…and I retired last year…his PD changes from day to day and is getting worse…then in Febuary this year he had a stroke…I wonder every day "why us?"and get very envious of friends whose lives have not been affected by any ill health…friends who jet set off whenever they like…but we have to look after each other which at times is very hard…I have no answer to any of this and have to take each day as it comes…the thing that keeps us both going is when our lovely Grandchildren tell us they love us…
Look after yourself Jean and stay strong which is very hard some times…sending you a massive hug…xx
Hi Babesbrown, thank you so much for the virtual hug. I really needed it today. I’m so sorry to hear about your husband’s stroke. Life can be so cruel sometimes. My heart goes out to you as I know just dealing with the PD is such a challenge on a daily basis. I hope he is recovering now. So glad to hear you have such lovely grandchildren who obviously adore you both. We have a precious grandson aged 5, who is the light of my life. We must count our blessings. Take care of yourself too and thank you again for your kind words. They’ve helped lift my spirits… Jean
Sorry to hear how you are both feeling at this time it really isn’t surprising.
We are just at the very beginning of our journey with my husband being newly diagnosed. It does worry me when I hear how people like yourselves are struggling. At the same time I am teaching myself to still try and carry on as normal whilst we can. Some days I wake up thinking of my husband’s PD but then sometimes I wake up strong and raring to go.
The only advice I have and I know this is easier for me to say but please try not allow PD take your life away from you. On my husbands diagnosis I was very much thinking why us and why doesn’t so and so get any bad news. However I realised I didn’t want to be like that about my good friends because you just never know what life could potentially throw at them anytime soon. We have to remember everyone has their own battles.
I do have down days at times and I have to force myself to change my way of thinking, hope you can both try and do the same.
Love to you both. X
Hi Lizzyg, just read your reply. Thank you. I had a really down day yesterday and as I don’t like to worry my sons by telling them how bad I’m feeling, sometimes the forum is my only outlet - now I’ve found it! Have been telling my sister about how awful I felt yesterday and she said it’s good I’ve been able to share with others who are in a similar position, as no-one else can fully understand how challenging it must be living with the stress and worry on a daily basis. When he was diagnosed 6 years ago nothing much impacted on our lives at first and for the most part we carried on as per. It’s only been the last year that things got much tougher, and he also had total knee replacement in November 2021. So there’s been a lot going on plus I have health issues myself which add to the stress and ongoing anxiety. My advice is to do as much as you can when first disgnosed as it’s as good as it gets I’m afraid. I’m feeling much better today and just off to pick him up from his new strength and balance class which he seems to be enjoying. Anything that keeps him from succumbing to the dreaded falls has got to be worth a try… Have a good afternoon and take care. Jean
There is absolutely nothing wrong with having down days and I think that goes for everyone in general. You have to have down days so you can get back up again and brush yourself down.
It is good that you are totally honest about how you feel on this forum instead trying to pretend everything is fine. It gives you the chance to get it off your chest and it will even help those who read it for them to realise they are not alone.
I totally agree on your advice because you do need to make the most of life now with PD because you just never know how things will progress. However again that is how we should all look at life because none of us know what is around the corner. No way should we sit waiting for crap to happen, if it even does.
Hope today was a better day for you. Great that your husband is getting out and doing an activity that helps him. I hope you use your time alone to do something for you. X
Thank you Lizzy. Yes, it was a much better day today. Hope you had a good one too. Carpe Diem… Goodnight and sleep well everyone. Jean
No luck with the nurse unfortunately, she wasn’t in favour of increasing his Sinemet because of side effects and basically said he has to learn to live with the tremor. She kept saying that we were at the beginning of the journey - thanks for reminding me! I feel my job at the moment is to keep calm and carry on. I am sure my husband hasn’t really taken on board it is a progressive illness. I am now in a different life than the one I was expecting which is tough to swallow I agree. But that’s where we all are. My husband has just sent off his form to the DVLA, I hope he can drive for many years because cars have been his passion since I met him at the age of 21. I hope you all have a good day tomorrow x
Hi Janey, I know with my husband having tremor dominant PD that the tremor is very difficult to bring under control and in a way the PD nurse was right but perhaps she could have phrased it a little better! Why should you both have to learn to live with it and not expect some reduction as he’s taking the very drug (Sinemet) that is supposed to be
the most effective against PD symptoms, especially tremor. I’m sure you will have already looked at the possibility of DBS for the future. It would have been wonderful if my husband could have had this procedure but sadly the consultant said he wasn’t a suitable candidate due to his, albeit mild, cognitive issues. I’ve read DBS gives amazing results with tremor. My husband was 65 when he was diagnosed. He no longer drives and gave up his licence three years ago. Thankfully I drive so we can still get out and about independently when we want. I hope your husband continues his love of driving for many more years. There’s no reason why he can’t. Wishing you both the best of luck for the future. Jean
I have no faith in PD nurses I am sorry to say…my husband saw his in Feb after not seeing her for 2 years His PD had deterioated massively…all she said was keep exercising! Which he does walking every day plus 2 exercise classes every week…
She basically ignored our concerns and kept saying " you have to live with it"…very easy for someone to say who does not suffer with PD…and keep exercising…
Hi ladies, so sorry to hear the issues with the PD nurses - it must be a very hard thing to hear when you are on the front line of the disease every day. DH has only had his initial consultant appointment in Feb and down for another one in July. I imagine that when your see a health worker you want them to truly listen to what you and your partner are experiencing and for them to be able to act on it accordingly. I know that I already have further questions for the consultant about the Parkinson’s/Plus situation although I am already prepared for the fact that I won’t get any answers. DH had a good few days away with friends but has hit another low this week. He has only told our kids, close family and 3 people at work - says he doesn’t want people to know and be looking at him all the time. I completely get it, we are only at the start of this journey but I does mean that I don’t really have people to talk to (my mum has mental health problems and dad just getting over cancer - plus I am an only child!) It all feels a bit much, like it is a full time job keeping him going. It already feels like I have taken over running the house and I feel already like a single parent. It feels so selfish to write all of this, but I haven’t got anywhere to vent. It is all so much at the minute.
Hope everyone is doing ok xx