Hello
I’m new to the forum . My husband was diagnosed with Parkinson’s 2 hrs ago
He has deteriorated very fast . He can no longer walk Iv been his carer up until September this year . As I have health issues of my own .
My husband will be 70 this yr .As like a lot of people we had planned our retirement got to adorable dogs 5 yrs ago so we could go out and about .
But sadly that didn’t happen the way we had planned .
Hello, CHarley2, and welcome to the forum. Sorry to hear that your husband isn’t doing too well (is it two years on from diagnosis?) May I ask how old he is? Parkinson’s is such a cruel disease and as you will already know, it affects everyone differently. It is my husband who has PD and I’m his carer. Our life is not at all what we envisaged for our retirement years either. He was diagnosed 6 years ago, aged 65. For the first few years he seemed to be stable and his condition was well managed, so life carried on as near to normal I suppose. In the last year he’s become much slower and other non-motor symptoms have sadly started to appear. All we can do is try our best to keep on top of things as best we can. There are very bad days, but thankfully still plenty of good days too! I hope others will respond to your post and send words of encouragement and wisdom to help you come to terms with it all and also to help you realise that you are not alone. It’s good to have this outlet as it’s often difficult to talk to those closest to you, as understandably they can’t really appreciate what you’re going through at this very difficult time. Sending best wishes and take care, Jean
Sorry, I’ve just re-read your post so ignore my question as to your husband’s age which you have mentioned… Jean
Hello CHarley2
Welcome to the forum but am sorry to read your very sad post. Parkinson’s is indeed a difficult, challenging and life changing condition but for many of us it is slow moving, allowing us to adapt and adjust to changes and giving us several years of good quality life - albeit not the life we necessarily saw for ourselves. Some people do unfortunately draw a particularly short straw and the deterioration, which eventually catches up with us all since there is no cure at the moment, can be rapid and is of course devastating for everybody.
There is little I can say that will help because your husband’s situation is what it is, but you wrote that you were his carer until September this year. I am guessing therefore that you have had to make some tough decisions about his care whether he is still at home or moved into a care facility. I may be entirely wrong here and if I am, I do hope I haven’t caused you undue distress, the last thing I would want to do, but I wondered if your post had been prompted by a struggle to come to terms with all that has happened.
It is normal to feel guilt when having to make tough decisions and to grieve for the life you had or saw for yourself and your husband. No-one, I’m sure, would criticise you for absolutely resenting Parkinson’s and the devastation it has caused to both of you.
Parkinson’s is a very individual condition and I have written many times in reply to those who post to the forum utterly devastated by their diagnosis, that they will find a way to live with it, that things will settle down. I also think that this can hold true at the more advanced stages but it requires an honesty about what you think and feel and is especially true of carers but could apply to anyone - family, friends etc. The difference is at this stage the focus has changed to managing the deterioration in a positive way so that when the person with Parkinson’s does die those that are left can seek comfort from the knowledge that they did the best they could by that person and be at peace with the decisions made.
As I said this may not accurately reflect your situation at all, but maybe there is something in what I’ve written that resonates with you. Grieve for the life taken from you, acknowledge how difficult it is to see your husband deteriorating so quickly and accept you had the courage to make those hard decisions to give you both the best quality of life you can. I hope this leads to your being able to find some sort of peace for yourself and minimise the risk of exacerbating your own health problems.
I sincerely hope I haven’t caused you any upset or distress by what I have read into your post if inaccurate. Having said that if there is something in my interpretation, it seems to me to be important you understand you are doing the best you can by your husband and yourself, that’s all you can do and it’s enough.
My best wishes to you and your husband.
Tot
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Hello Jean1
He was diagnosed June 2020 . From then it seems to have been down hill all the way. He retired when he was 65 . I was still at work but we decided I would retire early so we could enjoy some time with our little dogs. But sadly it didn’t go as planned , I retired to care for him .
As I said from September this year we now have cares come in twice aday to get my husband up and to help to bed.
Everything moved so fast . Also this year in May we lost our son in law to a heart attack. He was 38 and leaves our daughter and their 3 lovely little girls . It is a difficult time as we both want to support our daughter and grandchildren. But her brothers and sister stepped in and they make sure she is doing as well as possible .
So I do get angry at times with the PD and with life in general. It was hard to choose to have someone come in and take care of my husband,but this was the only way we could spend time together. Thank you for your reply .
You and your husband take care .
Hello Tot
Thank you for your reply. It is cares that come in to our home . Yes it was hard to make that decision.
As I replied to Jean1 we lost our son in law in may this year, which was devastating and very hard to come to terms with .
Life can be so cruel at times .
Take care .
It can indeed CHarley2 and it has clearly been an especially difficult time for you and your family this year. I hope with the healing that the passage of time brings memories of your son-in- law will bring you comfort not tears. It brings it home just how precious life is. I wish you well and hope you and your husband and indeed, the wider family can still share a s smile or two however difficult your circumstances, in tribute to your son-in-law. Tot
Hello CHarely2, I’m so glad to see you have had such a positive and informative reply from Tot. I hope you can take some comfort from those wise words and experience. May I offer my condolences on the loss of your son-in-law. You have had such a lot to deal with and I hope that with the carer now taking some of the load from you, you are managing to get some time to yourself to relax and reflect. My best wishes to you and your husband. Jean
My husband is 73 and was diagnosed 29 years ago. He has had Deep Brain Stimulation. We are about to start B1 Therapy that is helping a lot of PD patients. There is an excellent Face Book site called Parkinsons B1 Therapy. It is administrated by an English woman called Daphne Bryan who has written a book about her journey with an Italian Doctor called Agostini who started the protocol. She is much improved since the 5 years she started it. People as old as 89 have found benefits from it. Everyone is different so it is essential you read the book which is about 100 pages long and costs £1.99. Proceeds go to funding a trial for it to be licensed.
Hi JeannieBeanie, where is your husband having the B1 therapy? It’s now several months since you posted, has there been any improvement in his symptoms? Thank you.
You do the therapy yourself. You need to go on Facebook and join the B1 therapy site . I know it works because my husband has overdosed 3 times. We have been going through a bad time recently but are going to start again. It is essential you read Daphnes book which is not expensive. My husband needs small dose obviously because he has overdosed but it works for a lot of people and PD uk are on board with it.
Overdosed? What sort of overdose? Sounds scary.