Quick back story - R was diagnosed 2 years ago with Parkinsons or Parkinson Plus. He is on rasagiline, refused sinemet.
Last year he had an over-the-phone appointment with the nurse in which he said everything was fine, call over and done it 10 mins.
Last week we had a face-to-face appointment. We created a list of new and worsening symptoms which we agreed on. However, when we got there R completely underplayed everything on the list and even questioned some of it in front of the nurse. He was having a very good day and that was that really. Had we gone a week previous it might have been a different story.
So we came out of the meeting with us getting no further with anything, in fact a bit worse off as she thinks he is cruising a long nicely.
I guess this is just a moan really but for the other person involved, I was hoping for a bit more from the appointment I guess. Now wondering whether we have to go via the doctor/optician for various ailments.
Hello… yes, I think this must be common … what I suggest is ringing the Parkinson’s nurse yourself when you husband isn’t present and telling her all your concerns. The Parkinson’s nurses are there for the relatives as well. I hadn’t really clocked this for about 12 years as my husband was pretty high functioning untill just recently. I have emailed and rung our Parkinson’s nurse and it was really helpful.
Thank you for your reply, it is nice to know it is a known problem. It felt like such a wasted opportunity as I know that nothing now will change for a while - he won’t consider taking medication, his change in personality and memory won’t be improving etc.
yes, it’s dispirting and I know I’ve had this same experience too…I think when you contact the Parkinson’s nurse and explain … even ask for another appointment… earlier than usual…
Good evening RachRob … 100% agree with what you say. It is a fact that us Parkinson’s men & woman have good days, average days, poor days & very poor days.
If we see the NHS Neurologist or Nurse we are asked how we are now. They should probably ask “How have you been since I last saw you?”
What I have decided to do from Tuesday onwards [Tuesday is my 70th birthday] &
is a good day to start. At the end of the day I have decided to give my day a mark out of 10. I take that score & I put it in my diary & at the end of the month I will add all my scores & come up with an average daily score.
About 3 weeks ago I sent an email to my Parkinson’s nurse. I had been on a full Sinemet dose for about a month & I had played bowls [very well] for 12 days in a row. I told him how much better I felt.
Only a week later I had a terrible spell of about 5 days. There was one day where I was bowling & had to stop playing after a few minutes. I had completely frozen & I’m told gone as white as a sheet.
When the 5 days were up I was back to feeling pretty reasonable.
So the average score will tell me what sort of a week I have had, what sort of a month I have had etc …
My Parkinson’s nurse seems to take a 6 month view. Telling me I will be on
2 Sinemet pills 3 times a day.
At the end of this 6 month period he will ask me how I have been & he will review the medication I am on in relation to the symptoms I am displaying.
Unfortunately my husband still won’t come clean with his gp, about his symptoms.
We are no further forward.
He has had appointments ( made by me) and has made a million excuses, but will not mention what is actually happening.
He suffers from whole body tremors, that can last 4 minutes twice a day. He is now saying they are painful. He pill rolls and has the yes yes head bob.
He is a fit man , but has days where he will drag his leg and say its down to cramp.
He adopts a hard unblinking stare and sometimes cannot snap out of it for a few minutes.
He has a frozen shoulder, looses concentration easily, suffers with brain fog has become paranoid , but some days can have , what he calls good days. He suffers with constipation and his stomach swells. He talks constantly about dying young and what he wants me too do .
He is only 55, I have begged him to see a gp, but he tells me he’s not ready.
I have brought the subject up, on other appointments and he laughs it off, and has a plaster for every wound.
I’m scared he is stopping an accurate diagnosis and treatment that could slow/cure whatever is happening.
Thanks for listening
I think you probably need to really tell him how scared and stressful you are finding it yourself.
And then, I think you should ring and speak to his GP directly… he might have some suggestions and he also might possibly reach out to your husband himself.
Thankyou for taking the time to reply and sorry for hijacking someone’s thread
We have just come back from a lovely family holiday. Sadly he had an episode on the plane that he struggled to hide. He was shaking so badly , my grandson surrendered his blanket as he assumed gramp was cold. I had to cover his face as he was ‘yes yes’ lip sucking and crying.
It was absolutely awful… I asked him if I could make an appointment and was met with ‘NO’
I have spoken to his gp and unfortunately they can only act if he agrees. He denies everything when confronted. I have filmed him and shown him, and he has smashed the phone (lesson learned) and even though it’s saved on iCloud, he will not let me discuss it
I think you probably need to focus on yourself and getting support for yourself now. To be honest, if you are in a position to leave for a while, I would as the smashing the iphone sounds abit extreme and it’s not really a good emotional situation for you to be in … and sometimes it takes something like you actually leaving because it’s too stressful for you to be around to make someone listen.
My son and his family have moved into an annexe at our home.
Thankfully my son is there to step in and reason with his dad My husband reacted, as he was faced with ‘proof’ and was very remorseful after. Up until then. He tried convincing himself and I, that we were all overreacting.
My son works with his dad, so is also aware of what is going on.
My daughter has also raised her concerns with him, yet it falls on deaf ears.
Unfortunately, he had a horrific childhood, at the hands of an abusive alcoholic father who was in compassionate, and tends to withdraw into himself. If I tried scare tactics, it would make him so depressed, he wouldn’t get out of bed and leave the house.
He had a brain injury 30 years ago , which made him a recluse and practically non responsive for 4 years. I could not, ever, visit that path again.
On the whole , he copes well, and asks why it’s imperative he has a diagnosis.
I have explained how this awful disease can progress, and he says he would have to stop all the things he enjoys, if he’s diagnosed. He worries it will effect insurances , licenses etc …
No, not strictly true. Sure, some things will change, but with the correct diagnosis and the right level of meds, things can be fairly normal. As for licenses e.g. driving etc. if someone is aware that medically some thing is not right and they don’t inform the correct authorities, or take the right steps to prevent harm or damage, that could lead to unimaginable things. I, like many others of us here, continues to drive. That said, DVLA and my PD medical team, but most importantly ME, monitors the situation.
Living with PD doesn’t necessarily mean change, more ‘adapt’ to the situation we’re in.
Cheers
My husband doesn’t actually drive and notified dvla a number of years ago, following his brain injury .After two years, He was declared fit to drive, but chose not too.
He is a member of several hobby clubs ( which he hasn’t attended for a few years) but worries that certain licences will be revoked, stopping him, competing if he so chooses.
I think his biggest problem, is to accept something is wrong, as he’s buried his head for far too long .
I am so sorry to read this, sounds like your husband is very much in denial about what is happening to him.
Please look after yourself and make a plan on how you want to live your life going forward. I am the original poster and was just about to come back to say that despite my DH clearly being a lot slower both in thought and movement and a change in behaviour, he is still refusing to take medication. I have argued and argued and it is clear I will never win. So, I am making a life plan. This includes saving money and going into an account that belongs to me. I am making sure that I have down time and away time throughout the day and I am making sure that my children are well looked after and supporting them however I can (they are 15 and 17)
We are due a consultant appointment in the autumn and I am hoping that they will be able to see a decline.
It is extremely difficult and frustrating and I am thinking of you.
Rach
