Hi all this is all new to me and im finding this forum very informative.
My husband has recently been diagnosed with parkinsons however it all came as a huge shock!
My husband had a fall out of the bath approximately 7 months ago and a month later on the same side he hurt, his right arm started to shake. However the shaking became a lot worse. My husband thought it may have been a trapped nerve. He went to the gp and they said the shake wasnt connected to the fall and to return if no better after 6 weeks.
After some persuading as arm was getting worse my husband returned to the gp. The gp then referred him to a neurologist.
When we saw the neurologist he did the finger test, watched him walking and assessed his arm and asked some questions.We were then told the news that he had parkinsons.
This news hit us both and i broke down crying in the consultant room. I asked the neurologist if he needed any other tests however he said they would still give the same result.
He has been on madopar for approximately a week and shake remains the same.
When i look back at little things like when he pauses when talking as appears to have forgotten what he was going to say, saying the wrong words and being forgetful im thinking was this the beginning? Hes been doing this for a long time.
Me and my husband have a 19 year age gap, hes just turned 58 and im 39. We have 2 young daughters who are 10 and 8.
Im open to admit i am really struggling with receiving the diagnosis and cant help but worry about the future.
My husband has not worked for over 6 years due to having mental health problems. We both have care backgrounds and have cared for patients at end stages of parkinsons so we are aware of what could happen when things get to the end stages. This is something which is causing upset for my husband
Is there anyone else who is in the same position as me
Hello Littlelegs,
Welcome to our community forum. Thank you for sharing your story with us. Soon youāre bound to hear from members here who have similar stories and have been through some of what youāre experiencing. Youāll see for yourself you are not alone, and there are people out there who want to help.
Speaking of which, do feel encouraged to check out our website at Parkinsons.org.uk, where youāll find answers to your questions, along with research news, fundraising events, and archived forum discussions on a range of easily searchable subjects. And if you would like to speak with someone, please feel welcome to reach out to our helpline on 0808 800 0303, where a friendly advisor will be happy to chat with you. They can also help with paperwork, find support services in your area, and have a fleet of resources with which they aim to make things a little easier.
We hope these tools can help, and with our warmest welcome,
Jason
Forum Moderator
Hello Littlelegs,
I just wanted to welcome you both to the forum. Itās a good resource and has a message archive that helps me feel that Iām not alone when things get too much.
I was diagnosed about 2 years ago at the age of 65 so Iām older than your husband - but Iām still in the early stages of PD. I noticed tremor and stiffness and problems with balance combined with a whole set of non-motor symptoms (around 4 years ago).
I was moved by your story and can see how the prospect of dealing with this diagnosis must be a heavy burden with your young family demands.
I suppose the earliest days and months following diagnosis were the worst - before medication and strategies to help manage symptoms began. As time has rolled by and Iāve become more used to the impact of my particular version of the condition Iām becoming more accepting and less resistant to the changes that Iām facing. Iām beginning to feel āIt could be a lot worse!ā
I guess my most useful advice has been to take care of myself better: physical exercise, trying to manage sleep and the timing of dopamine therapy, trying to continue doing the things I find exciting and joyful.
Itās also perhaps helpful if it can become a āfamily affairā by being honest about how I feel and encouraging my wife and kids to help and be well informed - rather than me hiding away and getting depressed (which was certainly the case for some time after the diagnosis).
So, although I donāt frequently post myself I often log in and read about otherās experiences of this multi-symptom condition. There are clearly no two individuals with the same set of symptoms and this is sometimes confounding!
My go to resource is also the Parkinsonās Nurse (sound of heavenly music playing) because although I may have to wait some days for a call back they are always reassuring and full of ideas and resources.
So - all the best from me and I hope you can find solace, advice and support here.
Jon
Hi jon
Thanks for the advice it means alot. Our 2 daughters although young over the last few days have been brilliant and are now making sure dad is taking his medication, they are reminding him. I think this little thing they are doing is helping them to understand dad needs to take his medicine to help with his āpoorly armā as they call it.
They are also understanding when dad is having a lie down cause hes tired they leave him alone as the medication making him very tired atm.
Luckily martin took up lawn bowls to help with his mental health and the men he bowls with are being great and encouraging him go, picking him up etc so we are very lucky we have a good network around to help us.
Im still in the shock stage and finding the situation difficult. I work in palliative care and atm im currently on sick leave as mentally i know im not fit to work.
Im hoping once the medication gets into his system and im feeling better mentally we can get back to some form of normality, whatever that may be
Good afternoon Littlelegs ā¦ Iām 71 & was diagnosed with this wonderful disease following a positive datscan of my brain [possibly the most reliable proof of Parkinsonās] in June 2023, but I think Iāve had it for maybe 5 years. Yes it is a shock, but Iāve got used to it. Also there are far worse neurological conditions I could have had.
I first tried Madopar which didnāt work for me. I am now on Sinemet that does work for me. Although I have sleep related side effects with this drug.
With the mobility [freezing] issues I had with Parkinsonās I had to give up golf & I took up Indoor bowls & now play about 5 times a week. I am actually quite good & have played for our club in the county league menās team. But I do get a run of bad days where I do not bowl well & it frustrates me. I also find that I cannot play the away matches as riding in a car affects my balance & my shaking.
Everyone at my bowls club knows I have Parkinsonās & are very supportive of me with the issues I have. I cannot stand still for more than 1-2 minutes so I sit down between bowling my first bowl & bowling my second bowl, only briefly & I do not slow the game down. Other bowlers also pick up my bowls for me, which I could do myself.
Without bowls I think Iād be off on a one way ticket to Switzerland.
If you have any questions do ask.
Best wishes
Steve2
One of the big āproofs of having Parkinsonāsā is if the drugs you take works.
Having a datscan, as I did, was actually a waist of time as I would be prescribed the same medication if my datscan was positive or negative.
Talking of baths ā¦ my bath is very deep. A few months ago I misjudged walking through an open door & bashed my upper right arm quite hard. I hadnāt realised Iād hurt it & when I had my next bath I could not get out of it as my right arm could not push me upwards. I live alone & I was stuck in the bath unable to get out. Eventually I let out all the water & got my bath mat into the bath & got some traction & was able to escape. Phew.
Best wishes
Steve2
Hello Littlelegs,
Your reply to my post almost had me in tears - Iām glad the kids are on the case and being involved with your husbandās evolving condition.
My wife has a good way of looking at things: instead of fearing what might lie ahead, make the best of these months and years while the symptoms are more manageable.
Basically, make hay while the sun shines I guess.
Do you find the medication is having a positive effect? Or is it too early to say?
Hello Littlelegs
I made a conscious decision to step back a bit from posting quite so frequently on the forum as I used to do as I have had a tough couple of years (nothing to do with Parkinsonās) but I still check in quite often and reply to those where I feel I can offer something useful. The replies you have received so far I hope have helped
For my part I just wanted to say that all you are feeling now is perfectly normal, the shock can be huge and it can take some time to come to terms with it all but it does settle down, which you may not believe at the moment, but it does. My own diagnosis was 15 years ago last Christmas and I continue to live happily alone with minimal help - just 2 hours a week that I privately arranged mainly because I gave up my driving licence when I gave up work and it makes life easier getting to appointments and the like.
JOnathOmeās wife is I believe, entirely right when she says you should live in the present. Many newly diagnosed worry about the future but until the future becomes a bit closer there is no way of knowing how anybodyās Parkinsonās will progress so, by default, there is only so much planning you can do. However it progresses slowly in most so there is time to adjust and adapt.
For me, the strongest tool I have in managing my Parkinsonās is to stay positive. Not always easy but I work hard to maintain this and to date it has served me well - should you choose to look at some of my posts you will find that this is a very strong theme running through almost everything I write. For now both of you should just take your time getting used to everything - it is all a bit of a steep learning curve at the beginning, and you will in time, find your way to live with Parkinsonās just as I have and just as many others on the forum have done and we canāt all be wrong lol It is not always easy to live with Parkinsons, it can be challenging and frustrating, but it doesnāt have to be the end of the world - unless you choose to see it that way. I think it is great that your children are involved, To them your husband will just be Dad and accept whatever Parkinsonās throws at him, as normal.
Good luck to you.
Tot
Staying positive and living in the present truly does make a difference. Your journey of managing Parkinsonās, with minimal help and a proactive approach to appointments and support, is inspiring. It gives a lot of comfort to know that with time and adjustment, life doesnāt have to be defined by the diagnosis.
You are absolutely right, Semione01 life shouldnāt be defined by a diagnosis but I take it one step further and will challenge anyone who tries to define me by my diagnosis. I have said this so many times on the forum I sound like a broken record, but I am and will always be Tot first, who happens to have Parkinsonās.
Tot
I really appreciate you sharing your perspective, like it helps more than you probably know
Thank you for your kind words. It is lovely to think some on the forum are able to get something positive from what I write but I only write from my perspective as honestly as i can, I donāt do anything special really. However thank you again for your response and it is much appreciated.
Tot