Spouse of Early Onset PDer


#1

Any spouse/partners out there of 40 something year olds with PD?, I am struggling at the mo.

How do you cope?


#2

 

Me.

The wife recently diagnosed. It's been tough. Very tough. I'm still emotionally up and down like a yoyo and I'm still learning to cope but it's very early days - The meds she has started have had an instant positive response which has helped her enormously. Early days, one at a time from now on.


#3

Glad to hear the medication has worked well, its working slowly with mine. Yoyo,! yep I know that feeling.


#4

Would appreciate what type of meds she is using, as the co benaldopo my wife is taking has no effect at all, sorry about the spelling.


#5

Hi my hubby was diagnosed 18 months ago age 43. I have found this diagnosis very tough, I remember being in a total state of shock for over a year but I think that as time goes on we all learn to accept what life deals us, the biggest problem my oh has is with fatigue and he has a very manually demanding job that he isn't coping with which is very stressful for him. Nearly two years on we are accepting this but it is still a roller coaster ride with some bad but now some good days.

klou


#6

ropinerole, now increased to 3 x 2 mg a day with anti sickness pills, they are working but slowly. still some good days and some not so good. probably have to increase some more to get full effect.


#7

Sorry to hear that Klou, I do understand. Wife has had to cut her hours to only 2 a day, fatigue being the issue. This obviously brings with it financial problems on top of everything else we have to struggle with. Drugs are slowly getting there, hopefully in a few months she will be able to get back to working some more as it does do her good both physically and mentally. Hope the same can be done with your hubby. Yep, good days and bad days, enjoy the good days, chill out on the bad ones. Easier said than done I know.


#8
Hi Exile and Klou, I'm new to PD and have just started meds in late sept. A low dose of RaponerXL once a day. Nausea was the main effect at first. Changed the time I took them last week on advice from PD nurse. It knocked me for six for a few days but slowly gaining a bit more normality. I am about to start a new partime job to get out and about. I find yoga and tai chi really help me. Good days and bad but keeping positive (if you can) helps me. You've got to keep going otherwise the alternative is too depressing. DivineR

#9

Thanks DivR, I'll try and get the wife back to tai chi as it helps. 


#10

 

Hello Vantodder, apologies for the delay in my response. My wife was put on Sinemet and her response to it was unbelievably quick. Within an hour or so I would say. Now she just has to find the right level of dosage to take. The doctor prescribed 3 tablets a day, she never got up to that as she was finding that just 2 was getting her through the day (one in the morning, one in the afternoon) but she started getting the twitches in her foot and wrist which she has never had before. She has dropped to 1 and a half tablets a day which seems about right so far but still in experimental stage.

 

Would love to hear of anyone else's response to sinemet.


#11

Hi To All... First off, I admire the fortitude and strength found within the comments by both caregivers and patients...and appreciate the candor and honest expression of how challenging PD is to confront and deal with,,24/7/12/365...

I myself have battled PD for 5yrs...yet only started RX meds about 12mo ago having faced the ups and downs..on and offs and inconsistancy of non-rx L-Dopa for several years. I have been prescribed roppineral with minimal response and relief and know well the side effects and also the chaos dosage changes can bring on...I was switched to the Neu-pro 24hr patch and have gone from 2s to 4s and while the postive effects were...miraculous...the sideeffects have ranged from sleep attacks while driving to totally turning my sleep-wake cycle upside down while making sleeping more than 3-4 hours night..impossible. In my estimation based upon intensive research... I gather from the collection of comments above that the effect of dopa-agonists such as ropineral and rotigitine can lead to what is refed to as a "honeymoon effect" where energy levels return and physical symptoms are controlled leading to congitive improvements such as reducing apathy and regaining executive functioning...The after effect ...is with time a marked increase in on-off periods and duration/severity and return to pre-medication or lower dose statis...I try to remain hopeful in attitude and spirit and put on a masked but happy face but find every area of my existance...held hostage by this rubbish disease..

I try every moment of every day to resist giving in or up..but reality makes clear that everyone around me pays a increasingly dear price with the really nasty stuff still..god willing...years off.

Sorry for my overshare....I often ramble and overstep bounderies which is problematic..and embarassing more often than not..but know I feel and hear you all...I offer best wishes and appreciate your unique struggles...


#12
Dear Oceansong, No need to apologise for being honest on here. If you can't do it here where can you. Although you have to remain positive. You also have to have days where you rant at the injustice of this disease. I hope you find a happy medium in your life with PD. That's the best we can do. DivineR

#13

I appreciate your overshare Ocean-song. My husband is newly diagnosed this year, we were planning his 50th birthday which has had to be seriously curtailed while he adjusts.  Frustration is one of the strongest emotions for us both. 

Am I truly a bad wife?  I want PD to go away, most days we muddle on, and I have learned to be MUCH more patient and believe me that is a massive improvement and hard work, but I am so angry for both him and me, and I am so frustrated and worse I am so emotional, is this it? our future was meant to be fun, him and me doing all the things we said we would when we got time.  It's just not fair. 

On top of that the mortgage critical life cover we had, has refused to pay out as the medical notes have outlined how my husband didn't attend an appointment at the hospital for tremors in his hand in January of this year, as he was in denial there was a problem, so when we signed up for the insurance in March and he didn't mention the appointment (because he had forgotten about it), he also wasn't diagnosed until June, however, they have put it down to him deliberately omitting it and lying, now I am worried sick he will need to give up work (he has a very physical job) in the next five to ten years, I may be needed to care for him and how on earth are we going to cope with the mortgage.  I am sick with anger, frustration.......Why couldn't he have admitted there was a problem and been honest, and why can't the insurance company pay the genuine people like ourselves?

I know....think how he feels (I do honestly), but is it so wrong to be angry for myself too?  Having re-read this I sound so selfish, and I truly love my husband and I will be there for him because I want to be, but I just need to vent, and can't say that to family or friends they would be so shocked.....


#14
Margate, You sound like a great support to your husband. I feel bad for my husband and kids having to look at me go through all the things that comes with PD. I'm 51 with 3 teenage sons and there are lots of things that we had planned and you know what? We're going to do them! Don't shelve any plans but maybe alter them. Maybe your husbands consultant could write a letter on your behalf to the mortgage company? I know mine has offered to write to my work on my ability to continue to work. Good luck. DivineR

#15

Thank you DivineR, it sound like you have a great attitude and a lovely family around you.  I know you're right, and we will manage, and I should continue to plan our future, sometimes a big black cloud just seems to settle over you and I get so cross at PD.

You're also right about my GP she did say if there was any problem, to call her, and of course I haven't so I will do that and see if she can help at all.  Then maybe I'll try the consultant too, although her secretary is not the best at getting back to you or sending any type of letter out!  Thank you


#16
Margate, Does your partner have a PD nurse assigned to him as they can get in touch with the consultant quicker. If he doesn't, find out if one in the local hospital. Mine is very good at that. I do have a positive attitude but like everyone I have my black days, DivineR

#17
Sorry MargotH! !!

#18

ha ha no worries.

Yes I believe he does have a P nurse assigned to him but we haven't met her yet, I think we are due to first week in January, thanks for the tip I'll try her