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.