Worried wife

Hello

Its taken me over a year to.finally pop up. My husband was diagnosed by a neurologist in July with mild parkinsons, after he developed a tremor 2 yrs ago, after what we thought was due to being on medication for an injury and being on antidepressants, he is 52. As time has gone by he has a tremor one sided in his arm, but not at rest, infact if he holds his arm up in the air it shakes and as he lowers it, the shake stops.if he sits a certain way his arm can tremor,if he moves his arm slightly to another position it stops? He has slowed down, no left arm swing, balance is not great , and very fatigued. The neurologist was a private one due to covid we have not seen his NHS one for over a year from first meeting. He had an mri ruled everything else out. He is on coq10 , b12s and vit D. He is adamant he doesn’t want any meds.its a real scary time, its the unknown! before diagnosis I was pretty much in tears most days ,I am quite a strong character, but struggling. He still doesn’t really believe he has it. He knows he has symptoms, but I think he is like a rabbit in the headlights and finding it hard. He’s always been the strong guy the rock and confident of everyone. He is scared I think of losing himself, and relying on people, of which he has never done. He is a fit guy, walks about 4 miles a day anyway, but struggling…any advice?

Hello
Welcome on board and sorry you are having such a hard time. There are sadly no easy answers to the situation in which you and your husband find yourselves. For what it’s worth I suspect your ‘analysis’ of your husband is probably pretty much spot on. May I suggest you give the help desk a ring, I’m sure it will help to speak to someone. In the meantime I’d like to reassure you that your husband’s reaction is not unusual but can be terribly difficult for family and friends who feel they can do nothing to help or more to the point know so little about the condition, don’t know how to help. On top of that you, family and friends also have to adjust to the diagnosis. I know it probably doesn’t feel like it but you are hanging on in there, being there for your husband as best you can while he finds his way. In one way or another we all have to go through the early days and I mean all, the person with Parkinson’s, family and friends. It is a time when much is unknown and uncertain, when the future can look like one gigantic black hole and the only way is down. The reality is not like that. Yes it is a chronic condition with as yet, no cure, but for most it is slow moving and change can be adjusted to. Things don’t suddenly change dramatically overnight. Things do settle down but the timeline is variable and it sounds like your husband may be a slow burn in coming to terms with it all. There are a few things worth remembering just now.

  • Remember to look after yourself, you can’t support your husband if you don’t and you can make use of things like the help desk for yourself
  • Do your best to keep the lines of communication open but if he doesn’t seem to be following advice and therefore not helping himself - which can be immensely frustrating - it probably won’t help if you keep reminding him. Try and keep it low key, drip feed the ideas, choose your moment to discuss things etc. It can take time and patience
  • Don’t go mad and read everything you can lay your hand on. You run the risk of information overload and your imagination can run wild. Try and concentrate on what you need to know now and write questions down - your mind can go blank at the most inopportune moments
  • Remember you don’t have to change your hopes, dreams and plans just maybe do them a bit differently
  • I personally believe very strongly that a positive mindset is half the battle and finally
  • You can and will both get through this and find ways to live with Parkinson’s, we on the forum have all been there and lived to tell the tail and the forum is here 24/7 if and as you need.

Take care and let us know how you are getting on. I send my best wishes and virtual hug to you.

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Aw thank you so much, made me well up. That is spot on how we are feeling. I think its just all so frightening, I do not know anyone that has this , and I have read that everyone has different symptoms , its tailor made so to speak…he is a strong character, will not let anything beat him,and am sure this will be the case with parkinsons., We will get there, just early days at the moment. I really thank you for answering x

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Hi @Poppet and welcome to the Forum, as ever @Tot has summed up Parkinsons in a nutshell, really good post. I can add that your husband doesn’t need to change his lifestyle immediately but to carry on as normal, he will know when to adjust, hopefully not for a very long time. It comes as a shock to many at being diagnosed with it but remember that both of you need to adopt a positive attitude but don’t feel ashamed to ask for help. A way to look at it and I believe Tot was the first person to say it is that, he has Parkinsons, it doesn’t have him !! On the subject of medication, not every one works, it is trial and error to get the right one, some do have side effects these will be in evidence soon after you start on them, if this happens get back to your Neurologist and they will give you something else.

A useful person to be in contact with is a Parkinsons Nurse, the name of whom you can obtain from your local GP Surgery, they will provide you with help with any concerns you may have. Don’t forget that as Tot has rightly pointed out that if you need someone to talk to or you have questions, we are here on the forum to help you out, so you can dry your tears as we will give you the benefit of our knowledge. You will never be alone, we will fight this together. Take care and stay safe.

Les

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Thanks you Les for your advice, much appreciated :+1: The fatigue is really playing a big part at the moment, we don’t see the neurologist until November. Any recommendations on what could help?

I’m glad you have found your first time on the forum of use and hope you will do so again if and as you need, further down the line you may be able to use your experience to help someone who feels as you do right now. You are quite right it can be a frightening time, but it is really a fear of the unknown; once you know where you are so to speak you kind of just get on with life. You are equally right when you said of it being tailor made, that is a very good way of seeing it in my opinion (I might make use of it myself some time if you don’t mind). PD is indeed very individual which is why the forum can be so useful, more often than not someone can empathise and non judgemental support is a given. It is not always easy to judge how to respond to posts and i am very aware that first posts are often made when very vulnerable but equally I think it important to be honest. Parkinson’s is a complicated condition so just when you think you’ve got a handle on things you find its introduced something new. Everyone has to find their own way of managing what is going on and the evolving considerations as they arise and they are not always big things. Some people manage their Parkinson’s as being a battle and if that’s your husband way, and from what you’ve said it might be then that’s fine. People battle on for years and they are able to do so because they battle. It’s what keeps them going. Personally i don’t take that line. I accept i have Parkinson’s, it’s part of who I am now and thats that so to speak. What i do do is challenge the impact, when it throws something new at me I do what I can to adapt to it thereby reducing the influence it has and staying positive is key for me. I am now into my 11th year post diagnosis, live alone and manage perfectly well with minimal help having made changes as needed as I went along. I apologise for writing another long reply but I just felt you needed some kind of picture of the reality once you get past this bit. Cruise controller made some valid points especially re medication and specialist nurse (and thanks for your kind comments CC) and they are certainly worth taking on board. A quick look through some other introductory posts will soon show you how common your feelings are and a quick skeg at some early replies and you will quickly come to see how often we repeat the same advice - one day at a time, give yourself time to get used to it etc etc. I do hope you are feeling a little less lost now and able to face the uncertainty and changes Parkinson’s does bring with a bit more hope than before. As i often say in these early posts a diagnosis of Parkinson’s is not the end of the world, unless you choose to see it that way; I very deliberately choose not to see it as the end, just a different path and the challenge I give myself is to live life my way even if Old Parkie takes the lead now and then.
11 years on and he may have won the odd round but he hasn’t yet won the match!

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Hi there @Poppet
Everyone has their own way of dealing with their diagnosis and nobody takes the wrong way because the wrong way simply does not exist.
Tot & Cruise controller are spot on and you’ll be in excellent hands if you keep in touch with them and hopefully your other half as well given enough time will discover the benefits of posting on the forum where nobody judges and everyone is right (it’s a win win really)
Take Care
Tommy :pill::pill::pill:

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Hi again @Poppet, Tot has provided another comprehensive post. I do get fatigued despite my not over exerting myself, it could be an age thing being 67 !! lol You and your husband are still spring chickens, it could well be a side effect of PD, I don’t really know on that but do as I said in my post it would help you if you can find out about your local Parkinsons Nurse and speak to them and hopefully they can pacify your concern until your husband goes for his appointment in November. As Tot has said in her first post, write down all the questions you want to ask the PD Nurse and your Neurologist. Be sure to keep us updated on your progress into this minefield, don’t forget we are all here to help you in your time of need. Anything that comes to mind, no matter how trivial you think it may be just ask we will do our very best to help you. As T1 has pointed out, no one will judge you because we are all in the same boat and going in the same direction. Stay in touch, take care and stay safe.

Les

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Just to add a quick note to what cruise controller has written and I only mention it because people often don’t think of it; when something is less easy to do whether it be trying to manage the tremor so you can lift a cup, get up from a chair at the first attempt or whatever you do during the day, tthey will all take more effort and therefore more energy than per the onset of, in this case, Parkinson’s. It may only be a small amount but there is a cumulative effect. These small bits of extra effort add and feed into the fatigue which is a common feature of PD. Point is don’t just think of the big things, consider the day as a whole and see if their are any things your husband can simplify or do differently which may take less effort and therefore save a bit of energy for something else. However fatigue is an issue many of us face and you need to learn what your limits are, what takes most energy and if it can be do done differently, if indeed it needs to be done at all. There is the odd occasion when I know realistically I will be overdoing it and will probably pay for it later but I do it anyway and try to schedule a quiet day after that; sometimes it’s worth it!

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Hi Poppet,when Baz first told me he thought he had PD ( his dad had it and he felt his dad was looking back at him in the mirror) my initial reaction was “don’t be so daft just cos dad had it doesn’t mean to say you will.” in reality I think I had known for awhile as I could see pop too, but was in denial.He was initially very depressed ,anxious and tired all the time,but once the Dr prescribed Rasigilline and Premipexole I got the old Baz back.With loads of exercise he has maintained a very slow progression and apart from getting older (72)and slowing down a bit he is truely amazing,still cycling,playing tennis,walking skiing.
We treat PD as an uninvited guest who lives with us that we unfortunately have to put up with.
Baz is the boss in our house not PD.
With put him in the corner as much as possible and try not to let him out!
Going on 9 years and only started Madopar ( levodopa) 2 1/2 yrs ago. Still only on 100mg 3 times a day.
Everyone’s response to the diagnosis is different and we all deal with it in different ways.Baz took control of the PD straight away,not allowing it to take control of him. He was adamant no levadopa for as long as possible and only takes the bare minimum now.Exercise is his forte and without it he wouldn’t be where he is now.PD warrior is a great programme to enrol in online ,you can do it with him,it’s
Challenging but fun.
Our friends and family don’t see PD they see Baz living the best he can for as long as he can.They rarely have to make allowances for him as most of the time they struggle to keep up with him!
Don’t let it be a life sentence, keep PD in the corner live every day to the full,be mindful and live in the moment

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It is not easy to accept you or a loved one has Parkinsons. And there is little information that is relaible, At The European Parkinson Therapy Centre in Italy, this was one of the resaons it was set up. Particularly to explain that Parkinson’s is not the end, you can actualy fight back, live a good life and stay autonomous. It has operated at full capacity since its opening, drawing people from over 45 countries. Why. Because we give real research based solutions to living with Parkinsons and understand Parkinson’s deeply. The director has 15 years of Parkinson’s. We work with Steve Ford and Parkinson UK. If you want a chat just e.mail us with your telephone number and we shall be happy to help, no charge.
Kind regards
Alex

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Thanks @Tot, you are so right, we all are guilty of overlooking the small things we do during the day, taking them for granted and not thinking to mention them to newcomers. This could be part of my problem in addition to having a pain in the side(not my neck !! lol) which has meant my having to be very slow in my movement of standing up. I really should be doing some exercise but it is lack of motivation with me, I am so full of good intentions then they fall by the wayside or I forget. Something for @Poppet to consider is what @Flossie88 recommended, PD Warrior, you will find it on You Tube, something i’ve been meaning to get back to looking at. Have a good weekend folks, I will be around if needed, as ever take care and stay safe.

Les

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I was 47 when I was diagnosed. No right arm swing. Slight tremor at rest. It’s a shock to be told you have parkinsons. Be strong and be patient with hubbie. I was in denile and didn’t want any meds. I can assure you give him time to except the illness and in time he will give into meds to have a better quality of life. Life doesnt end it just becomes different. He will adjust. He will have good days and bad. Once he accepts the illness it get easier, but don’t let him see you cry and be upset. It’s hard but you need to be his rock.

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Thank you all so much! I really appreciate all your advice. For me knowledge is the best thing to have… have a great weekend everyone and thank you all once again xx

Hi Poppet, I was diagnosed at 50 & used to be a train driver on the London Underground, I was put on light duties for a while but they gave me fantastic support as did my family. I managed to get back behind the controls for another year before having to retire but it was my decision. I know how your husband feels. One day you’re in the premier league & the next day Sunday pub league. I had the same sort of symptoms no left arm swing, slight arm tremor and dragging my left leg. It’s very difficult to accept for blokes as we like to be protective of our loved ones so accepting a debilitating disease like PD can feel like a weakness which of course it isn’t as I’ve now found out. The medication his neurologist will prescribe will help slow it down but does as do all medications have side effects. It must be very difficult for the both of you but I’m sure given time and your support which your husband does need he will start to slowly accept his condition and take the medication prescribed which will make life easier and happier.

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Thank you nutcash…yes agree with you about premier league and Sunday…he is adament that he does not want any meds as he watched a pd documentary which showed people on meds with some serious side effects and think that scared him, it did scare me also…But these people had PD for a lengthy time, so maybe things have changed? How do you know whats best.?to take meds to slow down the progression, but possible side effects…or to start taking when symptoms interfere with life? When he saw private neurologist as its been over a year from first visit with NHS neurologist due to covid so had to go private…he said …you are mild so take meds when you feel you need too…is this good advice?

Hello again, hope you don’t mind my stopping by again but it is because I dithered about meds in my first post - you may remember my saying it is not always easy to guage the response. You seem to have come a long way in a short time I have to say which is great. I don’t pretend to be an expert on meds but it is in my opinion the single most difficult element of PD which is basically about symptom control as things stand. My consultant and I take very much a partnership approach, discussing all the options but ultimately the decision is mine. It is one of the things I found hardest to adjust to - on my rare visits to my GP I was used to being given a prescription and following instructions. The question about when to start has long been under debate, for me it was when the Parkinson’s began to have a negative impact on my quality of life. The meds can be very effective, the difficulty can be in finding the right one, the right dose and the right timings so there is an element of trial and error. Most medication carry horrendous lists of side effects, PD drugs are no different but like the other meds it doesn’t necessarily follow your husband will experience these and if he does tell the medical team, it may only need a bit of tweaking. Take advice, discuss it with the medical team, make sure you understand its purpose, ask on the forum if you wish. Ultimately the decision should be his. He needs to take careful note of symptoms so that the medical team have good information to recommend best options. As I said I initially found it strange to have a discussion based med choice but it is second nature now. For me it is about getting the best quality of life I can as the condition progresses. I would stress this is how I see it and my experience of taking meds which has basically been positive. Others can probably tell you otherwise, just don’t discount them out of fear of side effects or someone’s poor experience when they can give a quality of life that your husband won’t have without. It is a difficult area and like everything else in managing PD you make the best decision you can based on good information from reputable sources then see how you go!

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I too am a wife and my husband has had it 27 years almost. We still go abroad 4 times a year in normal times. He is almost 71 now. One suggestion if he will take it is herbal Mucuna Pruriens, velvet bean. Beans have natural dopamine and this one is particularly good. It’s on Ebay Uk and the one I recommend is Pure Selva Powder. The seller is based in Nth Yorkshire or Scarborough and it is not expensive. Try teaspon in some fizzy pop at first til he gets the correct dose. It works.

Also, as people suggest, a Parkinsons Nurse is the best help of all. Far more than a doctor. They specialise in PD.

Thank you Tot, I think I have had realistically since the first visit with the consultant in October, to then really think - this sounds like PD and its taken time but I am slowly getting my head around it, so if I can do this, then I can be the strong one for a while to help my hubby get his head around it. If I can get as much knowledge as possible, then I will feel happier …I am one those that needs to now the in outs lol…i think we will see what his NHS neurologists says, and hope she can steer us in the right direction…i am a little concerned though as she is more a general neurologist and not a parkinsons specialist…i may need to seek another opinion for meds etc if not satisfied . Thank you once again…no doubt you will see me popping up asking questions…as I say…i need to know what could be ahead and as I do not know anyone with PD this site has been amazing xx

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thank you JeannieBeanie, yes I have taken a look at Mucuna Pruriens before he was diagnosed, but thought I would wait for the neurologist first . So you find them effective? I saw on this forum these are used and are a natural way of meds?
27ys oh wow…and still go abroad etc…well you both must be amazing :clap: thats fantastic…x