Think my dh is about to be diagnosed with Parkinsons, advice needed.

[triplets]

Is anyone else got Parkinsons or caring for a partner. We have our first appt with a neurologist on the 18th Nov, I am very worried. Thank you.

My dad has recently been diagnosed with PD and he has had a very positive reaction to starting medication.

He has had to inform the DVLA and his insurers of the diagnosis but can still drive at the moment. He lives in the middle of no where and my Dbro and I live 2+ hours away in opposite directions so we're all trying to plan how to manage when he is no longer able to drive.

He has seen a specialist nurse who was very informative and should be his first point of contact should his symptoms deteriorate.

I wish you and your DH well for your appt with the neurologist.
Xx

Hi Muchtomuchtodo...........love your MN name btw :) can I ask what symptoms your Dad has, do you think they are in the early stages? Is it the DVLA who decided he could continue to drive ? So sorry tough for him and for you. xx

that should have been though not tough!

Aah, Puerto Pollensa! I have lovely memories of our time there a few years ago!

He was feeling generally slow and stiff, and his voice was getting gruff and hard to project (he's a lay preacher so more noticeable).

Another tell tale sign of jerkiness when someone else is moving your arms or legs was spotted by his GP when he was there with a different complaint and it was that which triggered his neuro referral.

Yes I think it is in its early stages. It was his consultant that said he was ok to drive but that he should notify the DVLA.

I work with people who have Parkinson's, I'm a Speech and Language Therapist.

I agree with the posters above, the symptoms do sound like Parkinson's - sorry. Medications do tend to be effective in the early stages. Therapy can also be beneficial - physiotherapy, Occupational therapy and speech and language therapy.

Speech and Language Therapy has good success with speech changes caused by Parkinson's, particularly if treated early on. The gold standard treatment is Lee Silverman Voice Treatment (LSVT). Medications tend not to change speech greatly so it can be worth seeking therapy early. Speech and Language Therapists will accept self referral.

Good luck with your appointment.

Thank you all for your advice and kind words. I am feeling very low today, and have decided no more googling or asking advice for now.........I am sure what the outcome of the appt is going to be. Again I cannot change things, but I am going to try not to dwell and worry.......I have three teenagers who don`t as yet know what is going on......they just think the tremor has been caused by the cancer treatment. They too have been through so much the last six years............its really really so unfair :( Thank you. x

Sorry you're feeling low today Triplets; I remember when my mum was diagnosed, I had a baby and a toddler, and was struggling to cope anyway.
I went in to see her doctor (in floods of tears) and asked when she was going to die!! It was then the doc told me that this is something you live with, not die from. I have to say the anticipation of how it was going to be was far worse than the reality.
There are such fantastic treatments around now, and it's such a slow-progressing condition, particularly over the age of 60 or 70; it will just become part of your daily life.
You've coped with the devastation that's cancer brings, this is small-fry!
(I don't want to minimise it, but I've experienced cancer and Parkinson's with both of my parents and in my experience, and that of my mum, PD is a bloody awful nuisance you all have to deal with but it doesn't come close to the all-consuming fear of cancer.)
Sorry if I've rambled, it's just my own experience! Keep posting, xx

Sorry you're having a down day, Triplets, but given all you've endured I'm amazed you're so upbeat and positive. Thinking of you and hope that tea and a few digestives help in moments like these!

Xxx

I rallied with the help of some Pinot Grigio
Some days it just all catches up with me I guess, some days I just want to pick up the phone to my Mum but she is no longer here, I miss her. I am finding it such a struggle atm with the trio. I thought life might be easier when they reached 6th form but its worse! They seem to be home more than they are at college, and now two of them are home for lunch every day, the house seems to be a permanent tip with them, forever leaving plates/glasses/shoes etc everywhere! Would be nice to have more money, I am sure we would all like that! Just keep thinking of all the things it would be nice to do whilst we can, we have always been keen travellers. Thank you so much ...........kind words really do mean a lot. xx

Hi Triplets, sorry to hear you're hear about your DH.

My dad was diagnosed 7 years ago and is still driving at the moment though is beginning to lose his confidence on longer journeys. He reckons that he won't be able to drive for more than another year, after which mum will take over.

He didn't start with any meds for the first year though when he did, they worked well. Now they're beginning to lose their effectiveness so his consultant is talking about 6 monthly injections. I'm not sure what this is as my dad just won't talk about it to me (and it's difficult as my DC are always with me).

Over the last year he's got a bit more unsteady on his feet but he still plays golf and goes to meet friends. I think the key is to keeping active as it has a very positive impact on both physical and mental wellbeing. He loves it when the grandchildren visit and can still manage to bowl to them when they play cricket in the garden.

Can you not try and explain to your triplets that you need to take on a bit more responsibility around the home?

Thank you oldbean, I do try and get them to help but sometimes its such a battle and I get too tired to argue! Sorry your lovely Dad has this, sounds as though he is still very much enjoying life, good for him! xx

How are you doing today, Triplets? I've been thinking of you, x

Hi.........it is Parkinsons :( Had a 50 min appt y/day with the neurologist, a very nice Swedish lady. She told us plainly, held nothing back. She has put him on medication immediately and says she hopes they will help his mobility though she can`t say for how long. He has been very low today, started reading web pages which has depressed him. He says that at least with the cancer he had hope, he has no hope this time :( He is very worried and upset for me and the kids. I just feel numb, scared and so tired of all these battles we have had to go through :(

Hi.........it is Parkinsons :( Had a 50 min appt y/day with the neurologist, a very nice Swedish lady. She told us plainly, held nothing back. She has put him on medication immediately and says she hopes they will help his mobility though she can`t say for how long. He has been very low today, started reading web pages which has depressed him. He says that at least with the cancer he had hope, he has no hope this time :( He is very worried and upset for me and the kids. I just feel numb, scared and so tired of all these battles we have had to go through :(

oops!

He's bound to feel low after his diagnosis. I'm sorry.

My FIL was diagnosed in his mid 60s and is being controlled very well with medication. He has a noticeable tremor in his left hand but is still OK to drive. It really can be very well managed for a long time so things might not be as desperate as they seem right now.

Just caught this and wanted to send you a random glass of Pinot.

My friend's dh was diagnosed and stayed stable for a long time on a diet of drugs and speech therapy.

Wishing you well

Hi Ruby, thank you for your replies, those few words have given me a sprinkle of hope.............xx

Hi Triplets,
I'm sorry to read about everything you have been through.
My dm was diagnosed with pd about 12 years ago, but she is thought to have had it for about 20 years (she's currently late 50s).
She has been on various medications and seems to be on top of it now.
Just wanted to let you know that once meds are finely tuned, they can be fantastic- I know someone with pd who was a professional photographer!
There will be good days and bad days, but there will be more good than bad although it can be hard to remember that!
Thinking of you and your family xx

So sorry OP. My dad has it too, diagnosed in his 50's, he is now 65 and he still does everything he used to, except he finds fine motor stuff like writing etc hard. He got quite depressed in the beginning but has come out the other side. You can now have the brain op while asleep so less of a daunting prospect. And the drugs seem to be helping. I think the biggest thing for my dad is feeling self conscious in a crowd. He tends to sit on his hand when out! X

I was diagnosed at 45 and your husband he’s going to have a good day and bad day is coming to terms with the diagnosis. I’m 7.5 years in and doing ok but young onset progresses slower generally. Get in touch with Parkinson’s UK, read the newly diagnosed section on the website and see if there are any groups to join. It’s shit but it’s not the end of the world.

@UnderCoverB0ss this thread is over 10 years old!