I have been diagnosed for over 2 years now and as a fairly easy going person I think I came to terms with the situation quite quickly. However, my lovely wife (41 years married) is struggling. She feels a huge sense of loss for the life we thought we would have compared to what it may now be like with PD. My symptoms are mild at the moment but we both know things will change in the future.
My wife has agreed for me to write this post and we are interested in comments from others who have or are going through a similar situation.
Hi @Lordfitwasp, thank you for sharing this. Itās completely understandable that your wife is feeling a sense of loss and uncertainty, partners of people with Parkinsonās often carry a huge emotional weight after a diagnosis. What youāve both done by talking openly and facing this together is a really strong place to start. We do have this information of looking after yourself when supporting someone with Parkinsonās, which hopefully might be useful for you both: Looking after yourself as a carer | Parkinson's UK.
If either of you would like to talk things through with someone who understands what youāre going through, our free, confidential helpline is also here for you: 0808 800 0303. Hopefully the group will have some great suggestions too. Weāre really glad you reached out
Hi @Lordfitwasp , Iām in a similar situation but several years further down the line. Diagnoised in 2017 (and now 46 years married). When I was diagnosed it came as a shock to both of us and we assumed all our plans for our retirement years would have to be abandoned. We rushed into doing some of the things that were highest on our bucket list - a trip to South America, for example. However as the years have gone by and the PD progression has been very slow weāve now allowed ourselves to plan a bit more ahead and are still able to travel far and wide - we did a trip to India last year and a 5 week self-drive trip to New Zealand earlier this year. There are things I canāt do anymore - we used to do walking holidays but my mobility isnāt up to that these days. My husband is very good at insisting I do things which I think are at the limits of my ability which is very good for me!
My wife was diagnosed at 44 , young onset on 2007 , we have now been married 43 years know each other for 50 ..
Were have a 5 year difference in age so we will retire in the same year. Nope that was changed, thanks to governmentā¦
in 2012 we both took early retirement. So we could do the things we wanted.
Our normal holidays ( from 1986 till 2010 ) were a drive to Southern France Cannes , area for 2 weeks and 2 weeks in Northern France . With a break in-between these years to go to USA. And Canada 4 times in 2 years with a view to move there in 2005 . Before being diagnosed.
But my wife got very concerned about taking medication abroad, insurance and what if something happened etc . So our holidays. Stopped we have days out might spend a long weekend away , even though we have all the time we need progress has been very slow.. itās. Not the mobility , which sometimes is a problem. Itās more a state of mind and getting older.
I would like to go somewhereā¦. It means walking and standing.. wheelchair maybe.. ok is there room in the car for that as well as luggage!
Dealing with hallucinations, paranoida. .. now .. wonderful
I am trying to arrange something for every week.. at the moment itās too hot .. but my plans get changed all the time , wife not feeling well, hospital appointment, doctors.. very hard to plan weeks in advance especially with theatre shows. As we donāt know how my wife will be on that day. .. hour by hour. By the time we have driven to our destination, my wife would have slept all the way.. her medication probably wonāt have kicked in .. itās hard to plan anything .. even shopping.
I can understand why your wife is finding it difficult. A diagnosis like this can change the way you both look at the future, even when the symptoms are still mild. But itās encouraging that youāve both been able to talk about it openly.
I think itās important not to let the fear of what might happen in the future take away from what you can still enjoy together now. Keep making plans, even if you have to adapt them later. Wishing you both all the best.
Hello @louisowen2608 being married for 40 plus years we obviously chatted about lots of things, but never illness apart from the odd cold was never considered never thought about it , then one day in March 2007 we both sat in the car and cried as our lives we changed for ever. What is Parkinsonās !
Do you Really understand .! ! . itās not just one person finding it difficult.. ! Life changing for the last 20 years .. no cure ā¦. Future.. ?
Trying to make plans when one of us has a condition that controls everything we do is not easy.. itās the other person has to do twice as much I never knew how much my caring role would be not just support but everything else.
We donāt fear the future.. we take each day as it comes .. but unfortunately Parkinsonās keeps on throwing odd balls at us , we get over one thing something else next day ..
Something extra has been thrown at us 3 years ago itās been building up no one tells you .. dementia , paranoid, delusional , hallucinations.. this is a strain on a marriage.. try making plans when you have 5 thing going on ā¦. .
So what is your storyā¦. Louis ! Please tell PM if you want to chat about PD or something
Thanks, Polomint. Iād be happy to chat. I donāt have a personal Parkinsonās story myself, but Iāve found your posts really interesting because youāve described the reality of living alongside it for so many years.
If you donāt mind me asking, what has helped you and your wife most when things have been particularly difficult? And have you found anything that makes planning days out or holidays a little easier?
@louisowen2608 One thing I found easier is taking full advantage of the assist travel that is available when traveling by train or plane. When booking a hotel ask for a room that is near where most things are so not so much walking around (could be a trade off with a bit more noise)
Hello Louise. Not being rude Iāll chat about Parkinsonās or anything else. But please never say you ā Understand or I know how someone feelsā unless you walk a mile in someoneās shoes.
Iām not going to say to much at this time as I donāt know you .. apart from your job description. And a self storage unit address!
What has helped . Me , myself doing lots of research never knew what Parkinsonās was .
Now when we go to PD nurse or consultant I interact and say things which I believe are wrong and I tell them so ā¦ stories not for this site ā¦
Planning days out ā¦. Ha ha you cant plan anything .. I can tell you lots of stuff on how it impacts our lives. But not here ā¦. Iāll be back later
Thatās fair, @Polomint I can see why you picked up on that wording, and Iāll be more careful with it. I certainly donāt want to pretend I know what itās like to live with Parkinsonās for 20 years. I appreciate you sharing your experience, and thereās no pressure to say anything youād rather keep private. Iāll look forward to hearing from you when youāre back.
@Johanmb Thatās actually really useful advice, especially the assisted travel part. I hadnāt thought about asking for a hotel room closer to the main areas either, but it makes sense if walking is already an issue. The small things like that probably make a much bigger difference than you realise when youāre trying to make a trip work. Thanks for sharing that.
Hello @louisowen2608 thank you . for that can , please I know your gender , if you donāt mind.so I donāt make mistakes chatting to you and what you know and what to know about Parkinsonās thanks
As a wife of husband with Parkinsonās I can fully understand your wifeās feeling of loss at your prognosis. Interesting that you say you feel youāve accepted it. My husband was the opposite was in total denial for the first few years. However I very much wish I had been able to come to terms quicker than I did as I feel we wasted precious time worrying about what āmightā be coming rather than living and enjoying what we had which was sooooo much better than now. My husband is 14 years diagnosed and had it not been for Sepsis visiting twice Iām sure weād still be living a much more active/travelling retirement. Sadly Sepsis took away my husbandās ability to stand & walk so he is now a full time wheelchair user, curtailing most of our travelling ambitions.
What Iām saying is Parkinsonās shouldnāt hold you back, donāt waste time on worrying about things that may never happen. Enjoy what you have because there are a whole load of worse things out there. All the best Jane
Hello @ you say you donāt know about Parkinsonās , I will try to explain in an easy way .
You use a computer that has a CPU ( brain ) you have a wireless keyboard and mouse , you type the letter āAā it gets sent to the CPU it comes out on the screen ā A ā but you canāt see how it happens it just happens , But its converted into Binary āAā = 01000001 or 065 . All CPUs work in Binary . As in ā1ā 0ā
We will say that Binary is ā Dopamine ā Just like your finger movement , you donāt think about it it just sends a signal its converted .= it works .
So one day your Mouse starts to judder across the screen or the keyboard starts to play up you think doggy connection batteries are running low , you change the batteries, itās a little better . Even though their new batteryās itās just not performing as it was , the connection just is not getting to the CPU , itās lacking something its not getting the information it needs to send the information to the screen something is mising .( Dopamine )
So you change the battery sooner ,letās say the battery is a āStanekā tablet .
So to make the mouse or keyboard work a bit better , you change the batteryās every 3 hours just to keep the movement smooth .
.. In other words the mouse ā¦( the human ) can not function correctly without Dopamine , either produced by our own body or synthetic tablets or infusions . This is Parkinsonās
