Hi I am new to this forum and not sure what to expect. I am just looking for info, support. At the minute my 43 year old husband is waiting for an mri and a DAT scan to see if he has parkinsons. He has had an initial consultation with a neurologist and the signs are pointing to parkinson’s. Obviously it’s a worrying time for us all as a family with a sense of disbelief as well as he is so young and has never had any other health problems. Is there anyone else in here in a simalar situation? I just feel a bit lost to be honest. It’s all we can think about at the minute. Due to his job he isn’t allowed to work till we find out more after all the tests have been completed. Symptoms at the minute are arm tremor, dizzyness, high blood pressure, sleeplessness, slower when walking and trouble swallowing sometimes. Any help or info greatly appreciated x
A warm welcome to the community.
We understand how difficult this situation must be for you, your husband and family and we’re sure our members will be happy to offer their support and experiences. Meanwhile, we do have some information for people who are worried that they may have Parkinson’s here: https://www.parkinsons.org.uk/information-and-support/do-i-have-parkinsons. It may help, but please do feel free to call our Helpline on 0808 800 0303 if you would prefer to talk to someone.
Hi @Shonab and welcome to our world. Initially, I would say, don’t panic, Parkinsons is not instantly a life changing disease, your husband needs to carry on with daily life as normal as possible. Adopt a positive attitude and make fun of the tremor, this is a coping strategy I found worked for me. What I tell people is they have Parkinsons but Parkinsons doesn’t have them. The thing with the disease is that there are so many different variants and so we all cope with it in our own ways but the main thing is we all support one another in our own little way. What is puzzling me is that he isn’t allowed to work, does he operate heavy machinery ? His Neurologist should be able to prescribe tablets to help with the tremor and possibly his other symptoms. Have a word with your GP Surgery to put you in contact with a local Parkinsons Nurse who I have found to be very helpful in my case. In the mean time try not to get too anxious, this is a great Forum and anytime you want to ask something, do so, there will always be someone about to give an answer be it a member or a Moderator. Wishing you all the best and take care.
Hello to you
I’m 40 and was diagnosed in August last… similar symptoms and more. I remember the wait for the DAT Scan and results - it is truly horrible. However, either way, the confirmation is certainly a relief because then you are on the right path to getting the right help and the right treatment. Yes, it’s the start of a long journey for us, but there’s so much we can do.
And always remember as @cruisecontroller says, a positive mindset throughout this journey will see you through. We promise.
Sending best thoughts and wishes to you both x
Thank you so much for the reply. The waiting is a nightmare. Im, going to get my positivity back on track and keep everything as normal as possible. All the best with your own journey x
Thanks for the quick reply. They haven’t put him on any meds as parkinson’s hasn’t been confirmed yet. As for the work part I think it has more to do with the dizzy spells and blood pressure. Have to say since he has seen the consultant the dizzyness and heart racing has been a lot better. Knowing there is a professional on board has made him a lot more relaxed about it all.so that could have been down to stressing about the whole parkinson’s thing. We do joke about the tremor and have a chuckle about it but every now and then I just get a bit overwhelmed with it all. Its nice to know there is people here to offer advice tho and for that I am greatful x
@Shonab, As I said, there will always be someone here for you. Being 67 myself I try to give the benefit of my short experience(9 years !!) and hope that people gain comfort from it.Try not to get too overwhelmed by it, be your normal self and put it to the back of your mind as a minor hindrance. You’ve got your lives to live so focus on that which is most important. We come from all walks of life but on here we are there for each other and are under one banner. Give your husband as much encouragement and support, it will be worth it in the end !! Be good and take good care of one another. xx
@cruisecontroller thanks for the tips. Feeling more positive already thanks to this forum. Makes you feel less alone. Xx
Your post sounds very familiar. My husband is 44 and it’s been a shock. We have gone through various tests since Sept 2019 and are awaiting a review appointment. Medication has been prescribed but needs adjusting.
You’ll find lots of help here on the forum. While every PD story is different you will find lots of answers to your questions here.
While PD is by no means the end of the world it has made me realise how much I was taking for granted. I’m now planning ahead.
While you will have to be strong for both of you please remember to look after yourself. It’s not just the patient whose life changes but also those close to them. Stay positive, stay informed and that will stand you in good stead.
Sending you a cyber hug.
@Momyali it, certainly is a shock to the system!! Can I ask what symptoms your husband was having?? We had made the mistake of using Google before we seen the consultant and where convinced he had essential tremor. Due to a 2 and a half year waiting list here in northern Ireland we paid to go private tho the consultant has promised us that hopefully all tests and scans should be done on the NHS within 6 months. Consultant also works for the NHS so we can still continue to see him which is great as hubby felt very comfortable talking to him.
Thanks for the love xx
Same here - we went privately due to long waiting times and were then seen on the NHS. My husbands symptoms when I look back have possibly been there for 3 years before coming to the surface. It started as leg pain in the knees and calves to the point where not a day went by without him describing the pain. He had his legs scanned but arteries, veins etc all seemed ok. He’s always been a bit of a worrier but I definitely noticed him becoming more anxious and OCD about things. Stopped wanting to go out anywhere. The real alarm bells rang when he had two falls last summer - just crumpled to the ground while standing. A trip to A and E ended with this being attributed again to his leg pain.
Following this he was prescribed anxiety meds and sleeping pills and basically labelled by our GP as being depressed. I knew in my gut this was definitely not the case and started my own investigations - slight tremor in left hand, leg pain, calling out and twitching in his sleep, crying for no reason, complaining of feeling ‘slow’ as though someone had switched him off…it all lead me to Parkinsons.
I booked an appointment with a different GP at my practice and just said it out loud. ‘I think he has Parkinsons.’ The GP looked shocked and said ‘he’s so young’ but I’m grateful that she took me seriously. ‘I know my husband’ I said ‘and he is not depressed. Something is happening to him.’
She asked him to walk across the room and then circled his elbow joints and flexed his knees before saying ‘I think you are right.’ She referred him to a neurologist immediately.
I do feel knowledge is power. It took all of my strength to admit to myself that there was something wrong but at the same time being involved and researching has helped remove a lot of fear.
Write down all your questions and ask them at appointments and write down the answers. Keep a diary.
Stay positive. There’s a long road ahead with investigations etc before any definitive diagnosis is made but take strength from the fact that help is available - medicines, great health professionals and helpful people on this forum. Keeping everything crossed for you whatever the outcome.
My lession learned so far is to take it easy and not rush. Parkinson‘s has been there since quite some time already, so taking medicine or starting another kind of therapy/measures can also wait until You figure out where to start and what is the best for you… few days or weeks do not make a difference… it´s a long journey - and it might turn out to be better than you think it will be today. Good luck!
Thank you @Momyali and @koru my husband isn’t very good at taking it easy but over the past few months has learned he has no other choice. Looking back the signs have been there for over a year. Will just have to be patient now and take each day as it comes. Thanks for all the advice and kind words. Love to you both x
I would of read past your post @Koru a couple of weeks ago not taking much notice (sorry!), but now it rings so true to me. My husband was diagnosed just over three weeks ago (53) and I rushed in full speed trying to find out everything and scared myself so much, husband was the complete opposite and taking it day by day.
Now I’ve taken a step back and we are both taking our time, as you say no rush as it’s been there for a while.
Hi Shonab, i sense you are in a bit of no mans land, a place many, if not all of us have been in at some point. Regarding employment; I am 46yo and was diagnosed with PD in April 2019, i recognised early on that i had to give up my employment once my diagnosis was confirmed.
As a (former) medical professional of 13 years, i was responsible in part for people’s lives and that of their families but given my condition, I alone decided i was not in a position to continue to work in my field of expertise due to the risks i posed to myself and others due to my PD. Therefore, through discussions with my employer, we reached an amicable and legal binding financial settlement.
However, many of us with PD can and do continue to work and i hope one day i can regain some level of employment but like so many, we are still finding our feet with PD and working on the best treatment and interventions. Stay Strong.
Hubby has spoken to his employers and they are supporting him fully. Once he gets all the scans and tests out of the way he can go back on reduced hours to see how it goes. Feeling a lot less stressed about it all now thankfully. Initial dread has passed and we can have a joke about it all. Thanks for your input. Wishing you all the best for the future x
Don’t worry! It isn’t all doom and gloom. I first discovered that I had PD in 2007 when I was 48: tremor, weaker voice, slight slowness etc.
Once the diagnosis was confirmed by the consultant neurologist and they got down to the business of prescribing drugs everything became much more manageable and I have continued to live a full and fun life. It sounds to me as though the dizzyness could be attributed to the high blood pressure? I’m not a medic but I have experienced both and it seems they were not attributable to my PD. I was prescribed more drugs and that was sorted. 13 years on and I take bigger doses now but the treatment is still effective. Having pressed as hard as I dared (I work on the principle that the wheel which squeaks the loudest gets the most oil) I will shortly be undergoing the “deep brain stimulation” known as dbs, procedure, which has been incredibly effective in some of my friends. Google it, there’s loads of stuff about it.
My advice to you both is: 1. DON’T WORRY or get anxious (I realise that’s easy for me to say!) 2. The people who really know and understand this disease are your husband’s neurology consultant (see if you can get aligned with one who is a Parkinson’s specialist) and your local Parkinson’s nurse (goldmine!) 3. Join your local Parkinson’s UK group and get to know them, attend their functions etc. 4. Keep active and if he’s overweight (as I am) - diet. I ALWAYS feel better when I’m losing excess weight.
I hope this helps you both.
Thank you @Fatforester. I put the high blood pressure and dizzyness down to stress worrying about having PD. He’s up in a couple of weeks to get a 24 heart monitor on tho the dizzyness isn’t as bad as it was. He is over weight so he is on a mission now to get fitter. At the moment he has a pain in the centre of his back which is slowing him down a bit as well. Thanks for the info x
Hi Shonab, I was diagnosed 7 years ago, although I must have had it for a lot longer. As the DatScan was quite new I had to go privately, which was a blessing as the results came through to my Consultant the next day. I have always been fit and healthy, but I kept getting different illnesses, bowel and bladder problems, sleep and restless legs problems, but my main symptoms are freezing and then falling, so I have trouble going out now as I have fallen so many times when crossing the road and in shops which has knocked my confidence. My husband and daughter have been fantastic, helping me with things and taking me out. But it has been really difficult for them to understand and see me this way but also I don’t think that I have come to terms with it, I still try to do simple things like weeding the garden but that has got to difficult as I often fall when getting up, I know every person is different and my symptoms have progressed very fast, all I can say to you is that you should read everything you can from The Parkinsons website, get your Consultant to book you in with the Parkinson’s nurse, I see mine every 3-4 months and she is my rock, I can tell her everything that I find to hard to tell my Family and she can increase medication or get earlier appointment with the consultant. Its going to be hard for you to see your husband go through all this but you have to stay strong. You can all go to your local Parkinson’s support group once a month, where you can get advice and they also do keep fit classes and walks’
Thanks for the reply @sally1. I’m so sorry that the PD has hit you so hard. I can imagine how worried your family and freinds are. We aren’t in touch yet with a nurse as we haven’t had a definate diagnosis till we get the scans. The report came in from the consultant yesterday and he is still undesisded. He noted the tremor and stiffness down hubbies right side and also mentioned his features. Saying he noticed lack of facial expression but couldn’t be sure. I also had noticed this but wasn’t sure if I was just being paranoid about it all. I guess we just want a definate yes or no right now. The waiting is horrible. Xx