Hi,
My husband has recently been diagnosed…he’s only 42 years old. He had been experiencing numbness/aching in arm, tremor in his hand, and with hindsight we realise his walking has occasionally been a bit odd and his balance a little off. Nevertheless it was a huge shock…the GP had assumed a trapped nerve.
However we have seen a great Neurologist who specialises in PD. My husband has started on Co-Careldopa 25mg 3 times a day. It seems to be helping with the tremor although his aching arm is still a bit of a problem. However he is very tired so wondering if that is a side effect. He is exercising…on the bike 6 days a week, as we know this is important.
I guess I’ve joined this forum in the hope of finding reassurance. The future is now so uncertain, frightening even. Will he be able to continue working and driving; will he be able to continue playing golf…what his retirement was going to be all about. We have 3 young children…we have so much still to do. Like i said, our Neurologist seems very good and I have faith in him, but I worry that there is only so much he can do.
Any help/advice you can give would be much appreciated.
Thank you.
Hi @KatieP and welcome to the forum!
I’m really sorry that your husband has been diagnosed. It’s never easy, but I can’t even imagine what you both must be going through, considering he is so young and you have a young family.
I’m sure other forum members will be along shortly to welcome and reassure you, but I wanted to point you in the direction of the information we have on our website for the newly diagnosed. Here you will be able to find answers to some of your questions, covering issues like driving, working, financial and other help. I would suggest you have a look and click through to find information at your own pace. Some people prefer to be armed with all the information from the beginning while others prefer to see how it goes for themselves.
Whatever option suits you best, you will find plenty of support here from people who have been and are there themselves. Of course, you can also call our free helpline on 0808 800 0303 (open Monday-Friday: 9am-7pm and Saturday: 10am-2pm) if you have any other questions about any aspect of living with Parkinson’s, or even if you need emotional support. We are here for you and your family.
Something that might be of particular interest to you is our section on talking to children and teenagers. It deals with things as when it might be a good time and a good way to tell them, and you can download a copy of our book My Dad has Parkinson’s, designed precisely to help them understand the situation, from here.
I hope this helps, but please keep us posted of how you are all doing.
Best wishes,
Mara
(Moderation Team)
Hi there, and welcome to the forum you probably never expected to find yourself in.
I was diagnosed 4 1/2 yrs ago (married with 3 teenage children) and am still working full-time and in many ways am fitter than I have ever been, although tiredness and a tremor do get annoying, and you have to be willing to adapt how you do things currently however frustrating it is!
Having the condition definitely changes your life in may ways, and my learning so far is as much as possible to try and stay positive (obviously easier said than done!), and without a doubt keep at the exercise. Don’t let the diagnosis limit you more than it has to - I’m lucky enough to be playing in a European football tournament for young onset PD patients in Copenhagen in late August, and am planning to start learning Karate this week.
You may need to continue to work with with your neurologist to find the right level of medication. One of the things my neurologist always asks me is “is the Parkinson’s stopping you doing anything?”, and then depending on the answer may prompt the question of whether meds need to be increased or changed.
This leaflet may be of some help: https://www.parkinsons.org.uk/information-and-support/young-onset-parkinsons, and there is also a separate forum board for young onset disease.
Any questions, carry on asking
Best wishes
Nick
Thank you Nick, exactly the response i was hoping to get. Sounds like you’re doing really well…good luck with that football tournament!
Katie
Depending on whether you’ve managed to find any support locally (I’m on on the south coast) I’d be happy to have a chat at some point if that would be of help. Just send me a message
Thank you. We are in the Midlands, and I know of a group fairly local to us…its very early days for us but am sure it’ll be helpful to meet others in the future.
Thanks again for your support.
Hi, thanks for the message.
How’s your husband doing? Mine has started on Co-Careldopa 25mg 3 times a day, plus lots of exercising. Tremors are ok so hopefully the meds are helping for the time being. Our neurologist said the best scenario he had seen in someone this age was 4 years before it stepped up a gear.
Katie x
Hi
He as good days and bad days, he keeps going which is good…his on co beneldopa which is 3 times a day at 125mg his also on madopar a controlled release for bed time also clonazepam 5mg one at night to help with bad dreams and sleep, he is also on rotigotine transdermal patch at 4mg he puts one on everyday. Still trying to get a good balance wuth his meds at the min but the patches helped him as just taking tablets didnt seem to do alot spread out for the day. Hope ur husband is alrite.
Dawn x
Blimey…that’s quite a cocktail! Hope the good days outweigh the bad. What hospital are you under? X
Hello Katie.P.
I am a 61 year old man diagnosed with PD last year after 5 years of classic symptoms, tremors, twitching, slow movement etc which the GPs put down to nerve damage. My wife always knew something was ‘not right’ and insisted I keep going to the GP - eventually I was sent to a consultant who diagnosed Parkinsons within 10 minutes. It was a blow but I was expecting it but its still a shock to have it confirmed.
I started on Ropinerol 8mg and that reduced the tremors but made me very tired and lethargic, felt like I had flu. Changed to rotigotina patches 6mg, they were worse and made me violently sick and felt like I was dying, changed again to co-benaldopa 5mg three times a day and they are working good, touch wood.
I suspect your husbands tiredness is a side effect of the medication, lots of people have told me it takes a while to get it right.
I played a lot of sport, boxing, rugby, rowing I still do indoor rowing and compete in races, I still hit the punchbag, lift a few weights, do an exercise program set by the nurses, cycling, anything to keep fit and strong, it helps keep Parkinsons on the back foot. I started oil painting as well and manage OK on the medication.
Regarding driving as soon as I informed DVLA my HGV and PSV licence were revoked and my car and motorbike licence are on a 3 year medical review. I still feel safe to drive and hope to continue doing so. I have a VFR 800 bike and still love to get out on it, and will do it as long as I can, its not a middle aged crisis its fighting back !
I enjoyed reading Billy Connollys books Bravemouth, Made in Scotland and Billy, he talks about coping with Parkinson’s and made me smile. I even started to play the Banjolike him to keep the dexterity in my fingers and making me think.
I have some understanding of the shock your husband and you must have felt getting told this bombshell at 42, keep going, talk to people, the nurses are good listeners and have plenty of advice.
You are not alone on this journey - best wishes.
Jack
Thank you Jack, really nice of you to take the time to message. Stories like yours really help…clearly there are bad days but it sounds like you’re doing really well. Very much hope this continues for you.
Katie
Hi Katie,
PD is like life, magnified. Inexplicable, unpredictable, unjust, and uncertain. The very fact that your husband was struck by this thing is proof of that, but once one (or one’s significant other) is diagnosed with PD the uncertainty seems greater because you’re in uncharted territory. That feeling will not last.
Over time, you’ll become familiar with the world according to Parkinson’s, and your husband’s and your confidence will grow as you deal with its numerous challenges.
Among the many elements of life with PD, is that it can discipline us to savour the moments of joy no matter how dark life may seem - like having to pay hotel fees on Mayfair after your child invested in it only a few moves before, or a rainy picnic in the country, or a good laugh in the pub with friends.
Welcome to the forum. I just started here myself. It’s great, and beats the heck out of Fakebook!
Loved your words…thank you!
Hi am Zo i was diagnosed with Parkinson’s when i was 40. That was 14 years ago now i am still going strong, just take life as it comes. Keep smiling
“Suspected trapped nerve”, slight tremor, slight balance issues … you could have been writing my story, except I was late 40’s. That was 5 yrs ago.
Remember your husband is the same person he was just before diagnosis, it’s just he has been given a new t-shirt to wear.
Working is fine, but stress is categorically not, so find every way possible to manage and reduce stress.
I’m midlands based too, have friends Sutton side and also Solihull side so if you want contact details for working age groups, send me a private message - I retired by choice last year, so happy to meet over a coffee or beer to chat through experiences.
Golf, especially anything requiring touch/feel will sadly be adversely affected, but you can still play socially.
sorry to hear of your husbands DX so young aas i was DX @40 so know how it feels only i dont have any kids so it is a lot more extreme for you but i am sure you know by now routine is the answer to everything as parkies usually are ruled by our meds yes exercise is important as it is without parkie but dont over push yourself you will feel tired after pills they are trying to repair or keep things working …good luck and best wishes for the future ps dont get to frustrated as it doesnt help lol
Thank you, thats very reassuring to hear.
Thank you, message much appreciated.
Thank you for taking the time to message. Will certainly take all the advice on board.
Hello Katie P
My husband had symptoms for a few years prior to finally being diagnosed in February '18 at the age of 52. We were convinced it was PD but the GPs (locums) kept saying that it wasn’t PD even though both his parents had it.
So, although we knew in our hearts that he had several symptoms we were shell shocked when it was finally confirmed. We didn’t cope well with the news at all (which came right after losing his Dad) and had a traumatic 6 months trying to come to terms with it. I feel so silly now typing these words but feel I should be truthful with you. We were both very low during this time.
Counselling and a mild anti depressent worked wonders in helping him to come to terms with it all.
I found a great Physio who helped him to regain some of his strength and balance. We also started to go cycling, beginning with adapted bikes and progressing to two wheeled mountain bikes in addition to using an exercise bike at home.
I found this forum which has been immensly helpful, as has the Parkinsons UK local advisor.
I knew the helpline number by heart due to the number of times I phoned it.
Our big breakthrough came when I found an AMAZING Personal Trainer who specialises in Neurological Conditions and particularly PD. He himself was also diagnosed at a young age, a year before my hubby and so understands the condition from a personal as well as a professional perspective.
My hubby has regained his strength, co-ordination and balance. In fact he’s stronger and fitter now than he was 10 years ago.
We’ve joined a social group locally which is aimed at working age people with PD and this was also a great help. I’ve learn’t that everyone is different in terms of their symptoms, how they deal with them and what works best for them.
For that first 6 months, PD was the sole focus of our lives and now it hasn’t gone away but is just a part of our lives. We’ve got our lives back, he’s still working full time, we’re socialising again, he’s got his sparkle back and we’re laughing again and enjoying our lives.
My only regret is that we didn’t find the Counsellor and the Personal Trainer sooner.
This is our story and I hope it will help you in some way. 