Hi. Just joined the forum and hoping for lots of support and advice.
My wife, Sue was diagnosed with PD two weeks ago and it’s hit us both like a ton of bricks.
Sue’s 64 and I’m 62 and we’ve loads of things on our bucket list.
A bit of history on Sue and her symptoms. Sue’s had osteoarthritis for a number of years and over the last two years has had both knees replaced. The operations went well but she’s struggled with walking and balance and we put it down to the operations.
Fast forward two years and Sue started with tremors and saw our GP who referred her to a neuro consultant who diagnosed PD.
He’s prescribed Co-Beneldopa but we’re on holiday until the weekend so she’ll start her medication then.
Our biggest problem is the fear of the unknown.
I’m considering finishing work to care for Sue and spend quality time together. It all depends on money but it’s looking likely that we’ll get no support from the state.I’m hoping to get lots of encouragement and positive advice from this forum.
Sorry for rabbiting on a bit but I’m really frightened of the future. Sue is my life.
Hi and welcome to our friendly forum, @toma617. You’ll find the members very supportive and ready to say hi as soon as they can.
My heart goes out to you and Sue. Of course you’re feeling frightened and concerned. Who wouldn’t? It’s so easy to overlook symptoms as you grow older, with all the aches and pains, and I’m glad to hear that you now know what’s going on and Sue already has some medication that will help.
Right now the diagnosis is new and there are loads of questions to be answered and decisions to be made. In time you’ll learn more and have a better idea of what may lay ahead. Everyone has a different experience of Parkinson’s and, if you read through the forum and explore our website pages for people’s stories, you’ll see the range.
Hopefully that bucket list will stay open to dip into and indulge yourselves with, even if it does need a tweak or two.
I’d encourage you to have a good look around the website, starting here: Newly diagnosed with Parkinson's | Parkinson's UK. You can also get an idea of the carer experience from this page: Caring for someone with Parkinson's | Parkinson's UK. If you want to chat to someone and get some advice and support, our friendly Helpline advisers are there for you on 0808 800 0303.
Enjoy the rest of your holiday and keep us all posted on what comes next.
Janice
Forum Moderation Team
Hi toma617, welcome to the forum. I’m sorry to hear you are struggling so much. I’m afraid I can’t answer your specific questions but I can give you the benefit of the little experience I have had so far. In my limited experience (4 years) PD is a long haul so generally things progress slowly (others please correct me here). Your best port of call will be your local Parkinsons Practitioners, if your local area has one, because they know everything, and your local PUK advisor. He/she will know what you can do, what help you can get, etc. When I was diagnosed I contacted ours and she came and saw us at home, very kind and useful. You will have a local PUK group - you don’t need to go to meetings but you might find them useful or interesting. You will get peer support from people who have got both T-shirts: carers and PwPs. They will have a list of contacts who may be helpful. Never apologise for “rabbiting on”. We’ve all been there and we are here to help, even if it is only to listen. Neil
Hello toma617 and welcome to the forum
I want to say right from the outset that the reaction of you and your wife to her diagnosis of Parkinson’s is very common and entirely legitimate. You wrote that your wife got her diagnosis two weeks ago, that is but a second in Parkinson’s terms and over the next days, weeks and even months you will both probably experience a full range of emotions. All perfectly normal. You will see time and again if you read other posts on the forum and indeed, I have written this myself more times than I can count, that there is no right or wrong way to living with Parkinson’s, just the way that it is right for you. This is repeated often because it is a simple truth, so by default anything you think or feel is part of the process of finding your way to live with it whoever you may be - the impact of Parkinson’s affects everyone to varying degrees not just the person with Parkinson’s.
Second and importantly, don’t make any quick decisions. You wrote understandably, of considering giving up work to care for Sue and have quality time together. Parkinson’s in most people is very slow moving, giving time to adjust and adapt. Having what is in effect a knee jerk reaction is not the way to do it and you could in fact make life more difficult. To take your second comment first. spending quality time together is in my opinion an important element of any relationship and a diagnosis of Parkinson’s shouldn’t change that. Arguably more important is your considering giving up work to care for your wife… The first thing that immediately came to mind when I read that was does she actua,lly need to be cared for at the moment. It is common to want to help. The person with Parkinson’s can be slow, can look awkward, can look like they are struggling erc and others step in and take over. All done with the best of intentions but you are potentially taking away something from their life because to see X struggle. is hard for you. It soon becomes a habit and the person with Parkinson’s ends up with nothing to do; This has potentially quite serious repercussions for the person with Parkinson’s. They can lose their role within the family dynamic, they don’t know how they fit, what their purpose is and this can lead to reduced confidence, maybe even development of mental health problems. In a nut shell don’t make Sue more dependent because you have decided that she needs to be ‘looked after.’ Far better to let Sue decide what help she needs.
To make a final point re taking on the carer role there are frequent posts from carers about how hard the carer role is. A lot of that is because they either
underestimate or simply have no idea how relentless, exhausting.,time consuming and lonely taking on this role can be. At the beginning it can be relatively easy. The person wth Parkinson’s can manage quite well and the caring role is light but as time goes on managing the caring role can become a major issue.
I have chosen to concentrate on certain points in your post as I felt it was important that you understood the implications of some of the things you are considering, however you made one other comment that is worth mentioning and that is when you wrote that your biggest problem is fear of the unknown. It is true that when you have a diagnosis of Parkinson’s you face an uncertain future but that doesn’t mean it is a one way street down. That looms large at the moment because Sue’s diagnosis is very new. All you’ve got to do at the moment is get used to the diagnosis, accept you will probably have a rollercoaster of emotions, concentrate only on what you need to know now to get through the next few weeks and months until the meds or whatever is needed to get Sue on an even keel begins to bear fruit. Take it one day at a time and at some point you will find you have come out the other side and can begin to look to your future with a bit more confidence, accepting it is not all bad, learning to appreciate today and living in the present - again I have said many times on the forum today is not a repeat, this 24 hours is a once on;y so why not make them the best you can. You may not believe that just now but it will happen and there are plenty of us on the forum still doing well after several years - in December it will be 14 years since my own diagnosis and I am still managing with minimal help that I privately arranged mainly to make life a bit easier when I gave up driving and that is only for 2 hours a week… I live alone and am actually quite content with my lot.
I appreciate this is a long post but I wanted to go into a bit of detail and I hope you will find at least some of it useful but more to the point reassuring. Parkinson’s is not the end of the world unless you choose to see it in those terms. I prefer to see it as a turn in the road not one I would have chosen it is true but it just means my life now follows a different path.
I send my best wishes to you both as you negotiate these confusing early days… They do pass,
Tot
Hi toma617, I see that you’ve had a few responses but I will point out that where NeilT mentions Parkinsons Practitioners he means Nurse, your GP Surgery should be able to help furnish you with details of this person. As Neil said, they are very helpful & knowledgeable.
You say about not getting support from the state but you can try Citizens Advice, I found them most helpful in getting some money out of the state.
On medication, not all medications work first time & so it is trial & error to get the right one for Sue but you will get there !! If you read what Tot has said she makes a lot of good sense & always provides a good response whatever the topic is. You would do well to look at other posts she has put on here to see what kind of person she is & learn from them. I wish you both well & hope i’ve given you some useful information to mull over.
Les
Hello, welcome to the forum. I am a carer for my husband with Parkinsons who is now 80 and I am 68. Yes the initial shock of diagnosis does take some getting over but you will. hopefully you will find your wife feels alot better with medication that once its optimum levels have been established will give her a stable settled period going forward.
Sorry to bring this to the fore but the sooner your wife applies for disability living allowance or PIP as it is called now the better. I say this because once she has reached 65 state pension age she is no longer eligible to claim this benefit. The urgency to claim this benefit is because it is the only benefit that gives you access to the mobility scheme whereby some or all of the benefit can be used to lease a mobility vehicle. If you don’t have PIP you cannot access the mobility scheme.
I am sorry to draw thus to your attention when maybe benefits etc are the last thing on your mind, but it is because of the age cut off I urge you to seek support in applying. Parkinsons UK has a great helpline.
Having to find the funds to buy a wheelchair accessible car at age 80 for my husband is looking to be impossible.
On another note my husband has had hip snd knee replacements both prior and after diagnosis (he was diagnosed 12 years ago). What was very apparent is his ability to be fully mobile again post Parkinson’s took considerable longer than before. Sadly he is now a full time wheelchair user brought about from contracting Sepsis, not as a direct result of Parkinson’s.
My advice would not be to make a knee jerk reaction and retire immediately. Let things settle and routines become established then re-assess. I did retire a year earlier than my designated state pension age of 66 and I very much missed having a focus snd outlet outside of the house. Obviously finances too are a major consideration going forward. My husband too chose to continue working and did so undertaking a daily London commute from the South until he was 74, he said he enjoyed using his brain (he was an electrical design engineer).
I do hope dome of this may have helped and please use the Parkinsons UK helpline they were life savers to us when my husband was first diagnosed. Very Best Wishes yo you both Jane
Hi could you help iv been trying to post an all about me message on here but cant seem to do so i have parkinsons and am new to this, thanks in advance,
Hello @Leosooty, welcome to our forum! Sorry to hear you’re having trouble posting something in the About Me area. You can go to About me - Parkinson's UK Forum and then choose New Topic and away you go. The same is true for an introduction right here in the Introduction and Personal Stories area. Just choose New Topic.
Let us know if we can help you with anything else. The group members and all the moderators are very happy to help.
Janice
Forum Moderation Team
Good point about PIP, Plus1, and you are absolutely right. There may be a little time because it depends when Sue will be eligible for her state pension - I have just become eligible for mine at 66 - but I agree it would be best to get it sorted sooner rather than later
Tot
Hello Janice, thankyou for your help i tried that & it seemed to work, so will put another message up soon.
I am carer to my husband who is 74. He was diagnosed with PD 30 years ago and I am writing this in the Algarve, our 4th holiday abroad this year. Luckily we have a friend with a place here.
Firstly, don’t make any decisions until your wife gets her meds sorted. Mucuna Pruriens is a herbal alternative, natural dopamine, and it really works. Indeed some people newly diagnosed manage on this without prescription meds but I am not suggesting this. I buy Natures Root 100% Organic Powder. Very reasonably priced. After 30 years my husband is on quite a lot of medication but I give him half teaspoon of Mucuna in juice to bring him’on’ with his meds. This morning I gave him one teaspoon without Sinemet plus( another PD medication) and he came on in 20 minutes.
My husband did not need constant care until about 9 months ago. I left him for 2 days last november with a neighbour checking in on him but I could not do that now. He is great when his meds are in but his ‘offs’ are bad now. The best advice you get is from PD Uk about everything and your PD nurse. I have a carer for me from Carer’s Resource and she is wonderful.
Everybody progresses differently with PD. My husband is still quite good 30 years in. Being a man the physical lifting and things will be easier for you if it comes to it. There is so much help and wonderful forums like this, Health Unlocked and the Face Book PD sight and B1 Therapy sight. Both must reads and B1 Therapy is having marvellous results for some people.
6 months down the line I hope you are in a better position. I am sure you will be.
Hi toma617 Welcome to the forum you are getting good advice from all members. Most of us can only tell you about our own experiance that we have had. I have had PD for 12 years. when hubby and I first found out, it was a shock of the unknown, At the time my mum had just passed away, we had looked after her for ten years she had dementia. A friend of ours was in a over 55 bungalow with a HA, we went to look at it and made our mind up there and then to sell up give some moneys to the boys & grandchildren, Moved into our new home then went to book trips been round the world twice and have good memories, 2 years ago my PD wanted to show me who was boss. but now 76 and hubby 81 we did want we wanted to. Not every ones cup of tea but we don’t know whats round the corner. If you can’t claim PP then do try and get AA but best we found is advice from (belive it or not ) our council but do also go and speak with citizens advice, just one last thing if you get PP you can also get free car tax I tried to get free car tax but once on pension they don’t want to know. Sorry to go on but it’s a mine field and all you can do is what you and your wife want.
Thanks everyone for your replies.
It’s good to have somewhere to go to and get some advice.
We’re slowly coming to terms with the diagnosis and hopefully the medication will start to kick in soon and we might notice a difference.