My husband (54) is waiting for an appointment with the neurologist in June. But since his GP appt. 2 weeks ago his tremor and stiffness have got really bad. He is very embarrassed and is spending most days in bed. It doesn’t help that he is unemployed at present. Am wondering if the shock is making things worse? Any thoughts would be welcome
It certainly made it worse for me, plus poor sleep, which often comes as well, didn’t help. I think the anxiety of waiting not sure what to expect or what the future will old. Add into that hyper awareness of possible symptoms and worrying that things were getting worse and it’s safe to say that I was a mess.
Now a few months after diagnosis I’m on medication, I have an exercise regime and a more positive hope for the future. In some ways my symptoms are now better than they have been for a long time before diagnosis.
Highly recommend the First Steps course which you should be able to find by searching PUK site. It’s for people with parkinson’s and friends and family too. Gives you a good insight of what to expect, how your husband can have the best chance of slowing progression and how to talk to medical professionals etc.
It’s heartbreaking but your husband can still live a meaningful life with Parkinson’s. Don’t forget to luck after yourself in all this, this isn’t just happening to him.
Oh and I believe a person can refer themselves to their PD nurse, you don’t have to go through the specialist.
Thankyou this is so encouraging. It’s been really hard trying to be positive but hearing that the medication can help has given me a boost. It’s a shame that nothing can happen until he has seen the neurologist but given the delays with Covid June isn’t that far off
My husband was diagnosed last July at 44. Even tho we new it was parkinsons its still a shock. He has started medication and is doing well. My advice is keep positive and get as much support as you can. Hubby is still working and living a normal life. As someone on here told me’ ‘you have parkinsons but parkinsons dosent have you’. Look after yourself and keep smiling x
Welcome @Janey2 sorry to hear about your husband. Let him know that there are people who have had Parkinson’s for decades and still live meaningful active lives. Also, exercise! It really helps me (51, male).
We’re now in May and still6 weeks to go before hubby can see a neurologist. Turns out this isn’t the scan but an assessment. He is really struggling and feels his life is over which is so hard to hear. Have shared the positive thoughts that people have written but he isn’t able to take them on board. 10 years suffering from anxiety and depression haven’t helped and now he is in constant physical pain often groaning in pain.The GP can only suggest paracetamol which doesn’t seem to help. I am at a total loss as to how to support him which is getting me down. Am wondering if anyone had any suggestions for pain relief.
We’re sure you’ll hear from our community soon, who can definitely share their experiences dealing with pain, or that of a loved one. We just wanted to make sure you know you can call us, as well, at 0808 800 0303 to speak with a caring, intelligent, trained adviser. Many have taken advantage of these wonderful folks and I’m sure they can share their experiences with you, as well.
Our best to you and your husband,
Have rather belatedly caught up with your post and the replies you have received say things I entirely agree with and by and large will hold true for most people. I can however appreciate that right now your husband’s depression is preventing him from believing any of it and that the six weeks you still have to go before seeing a neurologist may as well be a lifetime.
You say your husband has had anxiety and depression for ten years so I will have no need to tell you how hard that is for him and you and everyone around him. Even when you know it is an illness, being with someone who can seem totally self absorbed, who always manages to turn any conversation round to his or her problems and/or ends up telling you time and again how awful everything is - or at least something along those lines - it is extremely difficult to always be the strong one, the understanding one, the glue holding everything together and getting nothing or very little back in return. It is draining, exhausting and frustrating and at times make you want to scream in anger. You may think that brutal but I strongly suspect that in your heart of hearts that is probably not far from the reality even if to admit it even to yourself can seem disloyal.
Now you have an added dimension that depression and anxiety are quite common non motor symptoms of Parkinson’s. On top of that your husband is experiencing pain and that alone can be exhausting and fuel low mood and depression. It is hardly surprising therefore that you feel as you do. There are a lot of triggers in your husband’s circumstances that can potentially exacerbate his anxiety/depression tendencies it is not hard to understand why he can’t see a life with Parkinson’s. I know that doesn’t actually resolve anything for you but maybe to recognise it for what it is, all normal in the world of depression, may just help you cope for the next few weeks.
Things like meditation and relaxation can be helpful in managing pain maybe look at some complementary remedies but to be honest I doubt your husband will be open to these sorts of things just now. They might be worth looking into for yourself however, keep you going for the next few weeks?
I am not sure you will have much luck but it might be worth seeing if you can get an earlier appointment, maybe your GP could write a letter saying the home situation is at risk of breakdown. That’s not to be overdramatic or suggest it will happen and I apologise if that view is a total shock to you, but the risk factor is there and that can be seen as a strong argument for an earlier appointment. It’s possibly worth a try.
I hope this long post and what I’ve written doesn’t add to your upset or cause offence. I am aware it may well have touched on a few things you work hard not to acknowledge so you can keep going. But sometimes you need to see the truth and if I am way off the mark it can give you a clearer picture of what you are facing. That is important because you must look after your own health to continue to support your husband- if you get ill, can’t cope where would that leave him. Please make use of all support available including the help desk and of course the forum.
My very best wishes to you and I really hope you can take something from my post that helps a little even if a hard read at times.