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
Thankyou for your reply. I have thought long and hard and totally understand what you are saying.
My husband has rem nightmares, I feel I cannot sleep deeply. He plays out his nightmares and this continues with confusion when he’s awake. I decided to film him.
On showing him the film, after, I assumed he had completely come around, he became agitated and asked me , how I was inside his nightmare. He was genuinely confused and the following morning had no recollection.
We went to the gp the next morning, as he had burst blood vessels in his eyes. They brain scanned him and discharged him , as everything was normal, but found a small cataract ( he’s 50) .
He is paranoid, accused me of having an affair ( I never go anywhere and am always with a family member) . He now has full body tremors, both day and night, lasting around 3 minutes . He does yes yes with his head and makes a strange noise in his throat.
His handwriting is unchanged. He stares and zones out a lot. When I call him, he doesn’t hear me, when I touch him he’s startled.
His gate is stiffening and I actually read my forum posts and reply’s to him.
He listens and agrees that’s him, BUT, still won’t see anyone.
I am an optimistic person, help look after 4 elderly relatives , but feel , my happiness is ebbing away.
I fully understand your feelings, I love my husband, will always support him, but just want him, to get help x
This is of course very saddening to hear. Have you spoken to our helpline? The advisors there surprise the community consistently with the range of services they offer, and the unconsidered options they can provide. The call is free and confidential, and while ideally your husband would speak to them, you may benefit by speaking to the advisor yourself. 0808 800 0303.
Thankyou for your reply.
I have spoken, on several occasions to the lovely helpline. On one occasion my hubby listened, I passed the phone over to him and he hung up.
I know acceptance and admission is the hardest hurdle for him.
He has very supportive children and three of his grandchildren, keep asking, why gramps shakes . They love him dearly, but he sadly says, he is not ready to accept the inevitable.
I try to ask, what the inevitable is, and he says ‘change’. It’s almost like he has condemned himself, to the undiscussble.
I admire so many of you on here. I admire my brave , generous husband, I just wish he would seek help and get better x
Rachel , I hope you are well. My children are adults, with their own children, and are really struggling accepting Dads denial xx
I would just like to say how brave you are, I know we marry in sickness and health , but at the time being young these words don’t mean a lot, that is untill your health changes, What I want to say is that you say your hubby has REM (Rapid Eye Movment) Please I know this n=may sound silly ? but when the person act’s out his dream, it is very real to the. My hubby has REM (read my post about it) even though my hubby has REM it is me that has PD. It is hard to accept you have PD Jason has given you good advice, if you go to PD web page they do lots of leaflets , if it was my hubby I would tend to leave these lying around, if hubby gets rid of them , put another in its place, Do you know if there is any one who lives near you with Pd speak with them and ask if they would like to pop in for a coffee? but don’t let them tell hubby that they have PD. Slowly Slowly goes the phase, I know it’s hard but we are all here for you, ps do the GPs have a nurse ask if she could visit, explain to her what you situation is , you could tell you hubby that the nurse is comming to see you. I know it’s cruel but you have to be strong and you have to look after yourself. please keep posting and let us know how you are getting on.
Thankyou for your reply Mary.
Hubby has the ‘full bag’. The nightmares are horrific and he actually try’s strangling himself and stares at me like I’m the enemy. This has gone on for years. No recollection in morning.
I leave computer pages open, leaflets the whole shibang. Occasionally he will say he read them and agree he needs to see someone… that’s as far as it goes.
Last night we started watching‘Otto’ , I’m assuming the gentleman friend, has Parkinson ( haven’t finished yet… don’t want to spoil by googling lol) and hubby said turn it off.
Tonight it goes back on…
Definitely understand the whole in sickness and health. Have been together since 17 years, and yes sometimes, I do feel ‘why me’ but then I look at him and think ‘no, why him’.
It’s a funny thing, this post is about underplaying, my hubby won’t even put his foot in a gp surgery, to underplay.
My hubby keeps saying we need to tell the kids, I keep telling him, both them and the older grandkids are aware. He asks me how, my reply, is simply, observation.
A friend has PD, my hubby won’t even acknowledge the fact he has it… so strange x
Hi Concerned I think it is a man thing, I know this doe’s not help but times I tell my hubby to go and see GP he always says no I’m ok or well it’s my age ect. it took us 7 years to find out that my hubby had REM we were even told by one GP to sleep in separate rooms, You must find it very hard to keep going but hopfully one day your hubby will understand, for what it’s worth I think you are doing a grand job. If you do want to have a rant and let your feelings out; please keep posting. Remember you are not on your own. On a lighter note remember this ryme we used to say when we were small , what are little girls made of!!! Sugar and spice and all thing’s nice!!! what are little boys made of slug’s and snail’s and puppy dogs tails. That’s what little boys are made of . If I have just brought a smile to your lips then it;s worked, x
