Hi my husband has been diagnosed with PD at 50. The first appointment is in February which seems like a long time to wait as we have had no other input from any healthcare professionals. Is it worth him going private for first consuttion or are we worrying unnecessarily?
Hello Loliver and welcome to the forum
May I first ask who told you that your husband had Parkinson’s. The reason I ask is because you say that your first appointment isn’t until February and that you’ve had no input from any other healthcare professionals. It sounds like your husband didn’t have an appointment with a consultant neurologist who would have made the diagnosis.
If you wouldn’t mind clarifying this, I may be better placed to answer your question.
As Tot said, it is important to discuss diagnoses with licensed health care professionals, and avoid supposition if possible. To that end, please feel welcome to call our free and confidential helpline, on 0808 800 0303. What they cannot answer outright, they will work to find solutions to in your area. We also have a website at Parkinsons.org.uk which is flush with information and news that you may find helpful – along with the feedback from our lovely forum community, which our friend Tot has demonstrated happily.
All our best,
He had a tremor and the doctors sent him to have a DaT scan and we heard nothing back for two months. We managed to get hold of the consultants phone number through contacts at the hospital and he confirmed that my husband had PD over the phone. We then a few days later recieved a letter to confirm what he said over the phone. Hope this makes sense.
Apologies this ended up rather long you may want to make a cuppa before you plough through it. Hope you make it to the end!
Hello Loliver and thank you for the update. It does indeed make sense but I have to say it’s no way to hear such news and it does make me cross when I hear things like this, which happens far too often. It may be routine work to the consultant and indeed any other professional involved, but I wish they would think about the impact this sort of news has on their patients and be a bit more sensitive to the shock and devastation it can cause. However my ranting does not help you.
In answer to your question, I have to give the answer commonly heard in anything to do with Parkinson’s and that is it depends ie it depends on a number of factors that are unique to you. To clarify that a bit you will often hear it said that Parkinson’s is a very individual condition ie several people can have similar symptoms but the impact they have on any individual can vary a great deal. So you will understand that I can only give you some general points to consider that will hopefully help you to decide what you want to do. For clarity I will write in point form
I know February seems a long way off but Parkinson’s in most people moves slowly and if you husband is managing the delay probably won’t make a lot of difference.
Getting a diagnosis can be a very strange thing. On the one hand many feel relief that they have a formal diagnosis and on the other a whole raft of emotions and for many reasons - they may no nothing of the condition and just be plain scared, they may know enough to know it’s life changing and feel like they are facing a big black hole, they may feel that they have lost control over their life etc etc. You will also have a million and one questions. All of this is perfectly normal and whatever you think and feel is legitimate. If you and your husband are able to think of it in this way it may help keep your stress levels manageable pending your appointment
Getting a diagnosis can also be a bit of an anticlimax - you’ve been through a lot to get to this point, you have been given this life changing news and then nothing seems to happen which is certainly true in your case with the February appointment. The reality is that quite a lot about Parkinson’s takes a bit of time so again waiting for the February appointment would be unlikely to be detrimental to the overall situation
You will have gathered from these few general points that it is possible to wait for the February appointment with no particular detriment to your husband’s Parkinson’s.
If however your husband is managing less well which can be caused by the stress and anxiety
of the whole situation, it is worth contacting your consultant’s secretary and explain the situation to see if you can get an earlier appointment.
It may also be worth finding out if your area has a Parkinson’s Nurse and make contact with them. He or she should be able to address your concerns about the wait for an appointment and answer some of your questions. If you call the helpdesk they should be able to give you a name and contact details.
Personally I would think about these factors before considering a private consultation but obviously that has to be your decision. There are however a few points to bear in mind if you do decide to take this route
It is expensive.
What happens after the consultation. Do you carry on with private interventions that he or she may have recommended or do you wait for the NHS.
As I understand it private and NHS work is kept entirely separate, so if you are thinking about this you need to be clear about where you stand in terms of subsequent NHS involvement - I am assuming here that you do not have funds to continue indefinitely with private intervention of ccourse. Again the helpdesk may be able to help with this.
I’m sorry I cannot give you a simple answer to your question but I hope my comments have given you something to think about before spending money on a private consultation. I agree that in your shoes I am sure I too would feel February is a long way off, and I think the way your husband heard of his diagnosis is at best poor but, if you turn it on its head and accept that the consultant is an expert in his field and that there is nothing in your husband’s scans that indicated the need for an urgent appointment, you may also not mind too much waiting for the scheduled appointment.
I wish I could tell you what to do but the decision has to be your husband’s at the end of the day. If anything is not clear please let me know.
Thank you for replying I needed a new book . You’ve helped us stick with our gut instint which is to wait for the appointment. We have contacted our local Doctors to see if they can do anything and today they have offered him some tablets to take before the appointment. Bringing on another question he’s ok so should he take the meds if he feels he doesn’t need them yet
I’m glad you’ve reached a decision on the February appointment your husband and yourself are comfortable with. You’ve now hit one of the most frequently asked questions ie should I start medication or delay. There are conflicting views on this and it is a debate that I suspect will run and run. It is my personal view however, and one that is shared by many on the forum, that it depends (that phrase again) on how your Parkinson’s is affecting your quality of life. If your husband is managing to do all he wants or needs to do without feeling he is being adversely affected by his Parkinson’s symptoms, then it is worth delaying. If however his symptoms are affecting his quality of life it’s worth trying the medication. From what you’ve written, it sounds like he perhaps doesn’t need tablets immediately but it depends on his perception of how he feels he is managing. You will find as you go along that for many of us with Parkinson’s the important thing is to have the best quality of life we can have today and the unknown future will be what it will be. It doesn’t suit everyone but your husband will, like all of us, will find a way to live with Parkinson’s that is right for him.
Why dont you ask your GP to refer you to the community specialist nurse, the Parky nurse.
There must be one in or covers your area, they cant prescribe meds but once you see.the consultant, your been seen every 6 months by the nurse then consultant, they are also available on the phone Parkinsons.org.uk are a good source of support, they have nurses that phone you back and give you advise.
Thank you so much for all your support and advice. For the first time since diagnosis we feel like we are not walking around in the dark. X
I’m sorry your diagnosis was like this and so young.
Mine was in September, after several things that happened in the past, my Dad had it too, so some idea.
Just yesterday met Parkinson’s nurse, which was very helpful, I hope you have one in your area?
Take all the help you can