New - still waiting

Hi
My husband is currently awaiting a formal Parkinson’s diagnosis. He is 44 years old and began experiencing leg pain earlier this year which left him feeling down and led to him being prescribed medication for depression and anxiety. I myself knew in my gut that this was not the case even though he had suffered a bereavement some time ago.
Over the summer he had two falls where his legs just gave way suddenly. On the first occasion I took him to A and E because I was so alarmed but they just put it down to the leg pain.
Around September I noticed two things - one, freezing in doorways as though his feet were glued to the ground and secondly, the sound of him shuffling across the new laminate in our dining room whenever he was making his way to find me in the kitchen. I started to Google as you do and PD appeared. I read through all the symptoms and it made sense. I took him back to see a different GP and just came out bluntly with what I thought it was, one of the hardest things I’ve ever had to say out loud, and within minutes she referred him to a neurologist who within moments of watching him walk across the waiting room confirmed suspected PD.
He has had an MRI scan to rule out anything else 3 weeks ago and we are waiting for the results to come back from that. The waiting for and between appointments has been difficult and the deterioration in him in a matter of weeks frightening. Simply put he needs medication as soon as.
If anyone can offer any advice on how they got through the waiting period I would be most grateful.
I’ve been reading posts on the forum and many of the stories I’ve read have instilled me with hope and positivity. I am determined to help him through this as best as I can.

Hello my heart goes out to you at this difficult bewildering and no doubt frightening time. Unfortunately there are no easy answers to managing the waiting game. I was lucky in getting a formal diagnosis and started on medication relatively quickly but this sadly is not everyone’s experience and it can be á slow process. I wish I could tell you otherwise but that is the reality and I am sure however difficult it may be to read this ýou want honesty. This doesn’t mean however there’s nothing to be done so in no particular order and to use as you wish
Try not to worry, i know that sounds impossible but things do eventually get sorted
Do use the helpline to speak to someone to help you through this eperiod of you need and thè Parkinson’s ùk wèbsite has a ĺot ofioinformation; having said that don’t gò mad you will just be overwhelmed concentrate on your immediate concerns
'Be prepared/don’t be afraid to chase up actìons, appointments etc
Make a note of any questions don’t rely on memory
Finally if I might make a comment sincerely meant, instinct says relax a bit. You have already picked up on the oft repeated mantra to stay positive, not always easy but vital at this early time. PD is challenging individual and is life changing. It is not the end of the world, as you will have gathered from the forum wè all made it through the early stages. Sorry have got a bit carried away here, did you make it this far?!
Good luck and best wishes to you and your husband i hopé this period is short

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Hi Tot
Thank you for your kind words and reassurance. I rang the helpline a few weeks ago - more for myself than my husband. I returned from work to find him looking exhausted and in the midst of an anxiety attack. His appearance broke me. They were very helpful. Wishing you and everyone well with their own journeys.

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When I was diagnosed I was relived as I thought it could have been much worse. I Thought I’d been having strokes.

I’m 6 years in and though I’ve desired to retire because running my own business was to much pressure on top of coping with the degeneration.
My wife and I attendEd the Parkinsons UKs Manage PArkinson Course of six mornings over six weeks. There were parkies on the course with 18 years since diagnosis. It was enlightening to find that it’s not a death sentence. It’s a change that needs to be managed. Meeting and talking with others helps. Find out where your local Parkinsons UK group meetings are. There’s a lot of support out there. The drugs help as well of course although getting the right doses right and adjusting to them takes a couple of months. Ask for a referral to the local Parkinsons Nurse as they also know what support is available in your area. Good Luck keep positive p

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Positivity is definitely key and it’s great to know there’s so much help available. Thank you.

@Momyali You will never be a stranger on here, we all help one another in our own little way so if you have any questions to ask don’t hesitate. Someone will get back to you. As @Tot has said, the disease is individual and we are all different but we support one another on here. What you’ve got to remember is that your husband has Parkinsons, it doesn’t have him. I shuffle around the home, I also have memory loss and balance issues but I try not to let it get me down, when I go out I try to take the correct money as I get flustered easy. Try to encourage him to live his life as normally as possible and stay with the positive theme, it does work believe you me.

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Re. your husband’s understandable anxiety, get him to ask his GP to prescribe propranolol. I take it and it’s good for anxiety.

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Hi there,

Your GP has probably mentioned this but the normal MRI can’t diagnose PD, and it is primarily done by clinical examination which it sounds like what prompted the concern of the GP. There is a particular type called a DAT scan which might be requested, although if the symptoms are fairly clear then there may be no point.

The really key appointment is going to be with the Neurologist. If it is PD then medications can be started and should hopefully make a big difference. You should get the appointment in 18 weeks maximum (which sounds like a lifetime) depending on how well served your area is for neurologists. Although I work for the NHS, and I hesitate to mention it, but if money isn’t too much of a barrier then there will be neurologists working privately that would probably see you a lot quicker if that is an option

At 44 then he will generally be fit and healthy, so with the right medications, a positive attitude (easier said than done), and exercise then things will get a lot better than than they are now. I was diagnosed 5 yrs ago at 42, and am still working full-time with a busy family life and in the last year have completed the couch-to-5k and got my first belt in Karate (I was really not very sporty pre-diagnosis).

Your determination to help him through will be so important.

Any questions keep asking.
Nick

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Thank you so much

Thank you. These posts are very encouraging and helpful.

My husband has really struggled these past few days. Don’t think this time of year helps either. He’s never been someone who knows how to enjoy life - never been particularly outgoing or someone who makes plans. He can be quite stubborn and this seems to have become magnified with the illness. He’s not being able to stay positive at all and it’s sending his anxiety through the roof. He’s not slept these past few nights and it’s affecting me to the point that it feels like I’ve gone back to the days of having a baby in the house with all the sleepless nights. He was up and down the stairs last night between 12 and 4. Refusing to take sleeping meds. Not being able to get comfortable. I woke to find him standing in the middle of the bedroom. He’s really struggling. We still haven’t heard anything from the MRI that was ‘reported’ on 11th November. I’ve called the neurologists secretary several times and can’t believe he hasn’t even looked at it yet. I’m finding it difficult to accept that someone can be left in pain for so long without any help. It breaks my heart to see him suffering and deteriorating but I have to keep a brave face for the sake of him and our children. This once strong man has become so fragile and vulnerable in the space of a few months. He’s fallen asleep on the sofa at the time of writing. He’s off work with no pay for 2 months because he reduced his hours a while back as he was struggling to cope with his symptoms hence has not paid enough NI contributions to qualify for SSP. Hes deteriorating so fast I’m frightened that by the time he gets any medication it won’t even help. The physical toll is very visible - he shakes when standing, can’t walk through doorways without stumbling, can’t dress himself without help. The mental difference is something only me and the children see - the confusion, irritability and low mood. He’s 44 but in a matter of months it’s like he’s turned into a 80 year old.
We’re not in a great place financially - I only work part time and am now looking to increase my hours. We’ve had renovations done recently - something I would never have gone ahead with had I known this was coming. Its wiped us out. I do know I have the strength to face whatever lies ahead but I’m finding it so frustrating that he’s just been left to flounder like this.

I am so sorry to hear this, I can only imagine the nightmare you are enduring at the moment. This may seem an odd thing to suggest when clearly your husband is your priority, but it may be worth your thinking about going to see your GP for yourself. You are under a huge amount of stress at the moment and you describe very articulately how hard it is to see your husband like this and whilst you wrote you have the strength to face the future, it is important that you look after yourself and don’t put your own health last - if your health breaks what would happen to your husband and family. I think it would be helpful if your GP was aware of your situation and indeed may be able to help you push things along or even offer some other options that may be open to you. I would also suggest you get some kind of financial check to make sure your husband is claiming all the benefits to which he may be entitled- the Citizens Advice should be able to help with this. It is a very complex area and change happens, so don’t assume he can’t claim. Parkinson’s UK have a lot of info re work and it would be worth making sure you are familiar with this, again to ensure your husband is treated properly and fairly. Even though you shouldn’t need to, keep up the pressure on the neurologist and finally, if it helps, use the forum as you have done today, we may be limited in what we can actually do but we make an excellent pressure valve release. Don’t know if my suggestions help much but hopefully the neurologist or someone comes through for you soon to get the ball rolling. You will be in my thoughts.

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Thank you Tot. It helps knowing there are people who are going through or have been through the same thing. It’s the feeling of helplessness I’m struggling with. If someone has a wound you can bandage them up but with this its difficult. Sorry to rant. I get cranky when I’ve not slept. Fingers crossed he improves with the meds. Wishing you well.

I rang the secretary this morning - I emailed last Thursday and received no reply.
Apparently a letter was ‘sent out a week ago.’
I asked her if she could email it to my husband as we hadn’t received anything.
Some further blood tests have been advised and Sinemet has been prescribed.
Hoping we can have this before the week is out - our surgery has a prescription processing time of 48hrs.

Hi @Momyali I agree with @Tot here, I think you should see your GP yourself and explain what is going on, maybe with a video of your husband struggling. Your GP may be able to make one phone call and get your husband seen earlier. No 44 year old should struggle dressing themselves. He may take a tumble at home, end up in A&E and make things worse - your doctor will want to avoid that happening.

My only other advice is to keep him as active as possible - running, badminton and cycling help me although I was only diagnosed in October so my PD journey is also only just beginning.

Sending you both best wishes.

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Hi Pcyc,
We last saw our GP 3 weeks ago after a trip to an out of hours clinic following an anxiety attack. Although she is very good i got the feeling she was very hesitant to do anything until she had heard from the consultant about the MRI. I think now that the Meds have been prescribed the consultant wants to see how he takes to them before seeing him again. Just hearing that there is finally medication on the horizon has done him the world of good. He’s a lot more upbeat and positive today.
I think you’re right about exercising. It’s definitely something I’m going to advise him to do. How have you been since diagnosis? Sounds like you have a good approach in terms of managing it and facing it head on. I hope your journey is going well.

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Was so pleased to hear your news about the meds, hopefully now your husband and you can start to live with the diagnosis not just survive. Just a note of caution, meds are a balancing act and it sometimes needs a bit of tweaking to get the optimum leveĺ, that is quite normal so don’t lose heart if this is your husband’s experience. Onward and upward!

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Thank you @Momyali. My symptoms are not as bad as your husband’s so I am lucky, I just get freezing when doing certain activities with my right arm like stirring a cup of tea or brushing my teeth. And the arm shakes when I’m running or stretching it. I had my brain MRI a couple of weeks ago and am having a DatScan just before Christmas.

I really enjoy cycling and badminton so neither seem like a chore. I think it’s important to find exercise you enjoy. I have also made contact with my local Parkinsons UK group who have already made me very welcome, so I would recommend that too.

Glad to hear he’s being more positive. As the saying goes: You only get one life, live the life you’ve got. :star_struck:

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That’s sound advice Tot. We’ll have to take each day as it comes and take a trial and error approach. Fingers crossed. He needs to have some more bloods done and see Opthalmology so they still haven’t given us a definite name for his condition yet but I’m grateful to be a step in the right direction. Thank you to you and all on this thread for your support through this frustrating phase.

Hi. Nice to be a part of this community!