I’m still at the early stages of diagnosis and still waiting for anEMG and MRI but I have so many of the symptoms such as stiffness in my right side, problems with balance etc that I’m already trying to come to terms with what I know will completely chance the future I had mapped out.
My husband has recently retired and we were planning travel, we have 2 very young grandchildren and I was looking forward to looking after then when their mothers go back to work.
I t rying very hard to be positive and looking for ways to improve my exercise routine and diet but I feel as if my future has been stolen from me.
My husband is being really supportive but I haven’t told him about my suspicions about PD and I know it will hit him very hard and I feel guilty about ruining his future as well.
I would really appreciate some advice about coming to terms with this.
Hi @Jgo and welcome to the forum community.
I’m sure some of our helpful members will be along soon to offer support and share their experience.
Symptoms associated with Parkinson’s can be found in several other conditions. If a diagnosis of Parkinson’s is confirmed however, then symptoms can vary a great deal from person to person. Everyone’s experience of Parkinson’s will be different however there are a range of treatments, therapies and support available to help you effectively manage your condition.
If you wish to find out more while you are waiting for your diagnosis then you may want to take a look at our website for more information: https://www.parkinsons.org.uk/information-and-support/do-i-have-parkinsons
which both have information you may find useful.
In particular the newly diagnosed page contains information and suggestions for both coping with diagnosis and how to talk partners, family and friends about Parkinson’s.
There is also a special information section for family members and friends to help them explore issues related to a loved one’s diagnosis of Parkinson’s and help answer any questions they may have. This can be found at https://www.parkinsons.org.uk/information-and-support/support-family-and-friends
You may also like to contact our free helpline - our helpful trained advisers are available to offer information and support on all aspects of life with Parkinson’s and answer any questions you may have. Our helpline is available 9am to 7pm Monday to Friday and 9am -2pm Saturday. We can be contacted by calling 0808 800 0303 or emailing [email protected].
Dear Jgo. You need to stop, take a deep breath and don’t Google Parkinson’s. You will find lots of helpful advice on this forum.
I, like you, felt so guilty that my partner and I couldn’t do what we had planned. We had planned to go travelling around in a motorhome when I officially retired in 5 years.
It is a lot to digest and I have realised that Parkinson’s affects each of us differently.
Take your time finding out information and don’t overload your brain. Yes you will have days when you ask “why me” .
My way of coping is to tell myself it could be a lot worse. The main thing I’ve found is to keep moving and don’t give up.
Hello Jgo, I would echo Poppy’s comments and corinne’s advice. However hard it might be don’t let or at least try not to let your thinking run away with you because it will in all probability all be negative and you’ve not yet got a diagnosis. However should it be Parkinson’s there are a few things to bear in mind that may help. I am asking you to trust here of course and that is not easy when you’re frightened and worried. If you suspect Parkinson’s and it is confirmed you may be totally shocked, relieved you have a diagnosis, fall apart, weep and or rant read everything in sight …in other words however you react is ok and perfectly normal, you will quickly learn probably the most frequently repeated phrase is that it is very individual. However there are common denominators. For most deterioration is slow over an extended period of time and little immediately changes. So you have time to get use to it and find your way to managing. Too many read too much in the early days and end up scaring themselves even more. Decide what you need to know now and work with that. Write down any questions you may have for doctors etc - the brain has a remarkable ability to forget what you intended to ask until you are on your way home. It really is best to go one day at a time. Over and above the very early days, you will find a way to manage your life with PD. It is not all negative and dreadful unless you choose to see it that way, nor should you discard your retirement plans of travel etc. Much if not all may be perfectly do -able. Guilt is a difficult area and you will need to find your way to deal with this. However I would encourage you to speak with your husband if you can. You say he is being supportive which is great but he must also be worrying about you too. And yes it may well hit him hard if it is PD but ruin his future? With respect you don’t know that, it’s his life. It may be different to what you planned, that doesn’t mean it’s not good in it’s own way. I don’t mean that to sound harsh or be a criticism of your feelings but it is not in your gift however much I might wish it for you, to stop your husband feeling what he will, your wish to protect him I can fully understand but do,however and whenever you choose to do it, give him the opportunity to do the same for you. He might surprise you in a good way. Clearly things are very mixed up for you just now and if you do have PD I’m not going to deny it will bring challenges that are not always good. But it is not all bad either and much of how that plays out depends I believe in your attitude to it.
You will be ok, you will get through this and you will always find support here. I hope some of my comments haven’t upset or offended you, I can assure you that wasn’t the intention. It is simply how it seemed to me from how you wrote nothing more
I send best wishes to you and your family.
Hi @Jgo. I was diagnosed with PD about 3 years ago although I had symptoms long before that. My initial reaction was to think all plans for the future should be abandoned but after having a bit of time to get used to things I’ve found that my husband and I can still do all the things we planned. We’ve done loads of travelling in the last couple of years - in fact we intially booked trips to all our must-see places on the theory that I might not be able to continue travelling but are now making plans for the next few years as well (always assuming that travel becomes possible again!). My son and his family live in South Korea so travelling will always be very high priority.
I’m also still able to look after my two young grandchildren who live in the UK. Sometimes I do need more support from my husband than I would have before - for instance I might need him to carry them if I’m worried about my balance. But in general things have carried on much as normal.
All the best, Clare
Hi Corinne, thank you for your reply and for the info. I’m sure that I will find this forum a source of great support.
Hi, thank you for your reply. I’m not at all upset or offended by your comments.
You’re right, I am beginning to realise that it is impossible to predict how this thing will develop, if it is indeed Parkinson’s, and I can’t work out whether this makes it better or worse. Very confusing.
I have talked to my husband about my suspicions and he was amazing and it really helped me to put a few things into perspective.
Hopefully we will still be able to do some of the things we planned but maybe in a different way. We’re certainly determined to to as much as we can while we can.
All the best to you and your family,
Thank you so much for taking the time to reply.
You’re right, I seem to spend all my time googling Parkinsons and it all seems very frightening and negative.
Yes, it is very tempting to cry “why me?” but then again “why not me?“
I am already finding this forum a source of support so thanks again for your thoughtfulness,
Hi. I was diagnosed 3 years ago when I was 64, but my diagnosis was not much of a surprise since my father had Parkinson’s and I recognised the signs.
Like you, I was and am concerned about the effect on my husband. He had taken early retirement so that we could live near my mother, who was suffering from Alzheimer’s disease, and he was already helping with her care before my diagnosis, so it seemed very tough on him.
My illness has made a significant difference to our way of life, particularly for me, but we continue to have a good lifestyle. We have been able to travel. My husband has taken over a lot of the housework, cooking and gardening but is enjoying the challenge. I’ve enjoyed membership of our local PUK group and attend the exercise class regularly.
I think it helps a lot to take each day at a time and try to live in the present. A cliche, I know, but true.
The Michael J Fox Foundation has recently published a guide for people who are newly diagnosed. You’ll find links to it on their site and Parkinson Life.
Thank you so much for your message. I’m still at the start of my Parkinson’s journey and finding it very difficult to accept.
I think the next hard step will be telling my children, which I am dreading because I know it will hit them hard.
Once we are allowed to meet up again I think I will find it helpful to be able to meet fellow sufferers.Thank you for your advice.
Maybe there will be something here that can help
Typing something in the search about how to tell others…may be something to try.
I don’t know how old your children are but it pays to tell them following the advice newly diagnosed are given on the forum ie don’t overload them, keep it simple straightforward and factual, make it clear they can ask whatever they wish when they need and are ready - that way you are telling them what they want to know rather than what you think they should know. I strongly advocate honesty but obviously using age appropriate language. Finally be brave and bite the bullet, children have a remarkable capacity to accept even if initially distressed and us adults sometimes do not give them enough credit and assume a lot that is not so.
My children are all grown up and I believe emotionally mature enough to handle this, I will probably tell them face to face so that they can see that I haven’t completely fallen apart.
Thanks for your advice
Hi, there’s lots of good advice on here which I’m sure will help you. I just wanted to say that my husband has parkies and was diagnosed 11 years ago and he is 76 now. Yes, nowadays it makes things a bit more difficult but we do still manage to do the things we want to do and over the years since diagnosis we’ve done lots of holidays and experiences, even jumping out of a plane. So don’t write yourself off and when you’ve processed lots these things a bit I strongly encourage you to get to the European Parkinsons therapy centre in Italy as they’re brilliant at empowering and helping get life back on track. It was a pivotal trip for us. I wish you and your family well
Hi, thank you for your message. It is easy to assume that your life is over when this happens, so it’s good to hear that you and your husband are still enjoying life.
I will certainly look into your suggestion.
Thanks again and all the best.
Ditto re European Parkinson’s Centre. Made a big difference to me.
Hi Jgo if you go to parkinsons’s web site the have a booklet on what to tell the grand children and another how to tell friends ect not sure of the title of the leaflets but just see what they have, and if you are diagnosed with “parki” do join parkinson’s uk they are so helpfull. I was diagnosed in 2010 i had looked after mum for 10 years who had dementia , then i was diagnosed with pd, so we sold the house went round europe twice Aus, New Zealand and many more, oh not forgetting the kids they allso had some moneys, then we moved into an Anchor social bungalow never looked back. yes i have pd but remember it is a very slow progressive illness, ps i also have a very good pd nurse.
You are saying what I felt 3 years ago when I was diagnosed. We all have our own journeys but keep a diary of symptoms, how you feel etc. When my consultant started me on medication I felt like my dimmer switch was turned back up. I can honestly say it has not stopped me doing or planning anything. A positive “can do” attitude helps and being self aware and not hard on yourself. Good luck
I can identify with your reaction and worries. I was diagnosed 5 years ago at the age of 58. Hopefully you will get some medication to help control the symptoms. Don’t give up your dream of travel. Since diagnosis me and my hubby have been to USA twice, we travelled by train from West coast to East, and used the hop on hop off buses in San Francisco, Chicago, Washington and New York. We have done several cruises and we look after our 21 m old granddaughter one day a week. (Normally) sometimes I need to be encouraged to make big plans, but it’s great, when you have achieved your goals. Focus on what you can do, rather than the limitations. Rest when you need to and accept help when needed. Good luck!
I too would have said to chat to your husband with your thoughts as you already said he is understanding. I have had Parkinson’s for about 13 years and I just take things as they come… If you spend time worrying which I understand is natural but we miss all the time we could be living as well as we can.
Like you I used to spend time on different Parkinson’s sites and everyone seems to have different symptoms and it is very scary and worrying and you think is this what I have to look forward to so apart from this forum I don’t look at any others. The people are friendly and give good advise.
I wish you all the best
I am 46 yrs old and newly diagnosed with pd about 2 weeks to be precise, telling my family was the hardest especially my 15 yr old daughter. I have found talking is helping me through this so far, I went for a walk yesterday with a mate social distancing of course and I never shut up it’s the most I have talked without getting choked up since I found out. Lucky he’s a good listener. The best way to deal with this is for me is to share your thoughts with your family. I am lucky I have a fantastic wife who is my rock.
This is my first post so hope it’s ok for you.
I used Pablo as my username as Paul wasn’t available I am from Sunderland nothing as exotic as Spain