Husband just been diagnosed, hoping to find hope on here


#1

Hi,

Harry was diagnosed with Parkinsons less than a week ago, I was expecting the diagnosis but he took it badly, hoping and hoping there would be another explanation. He has been fighting bowel cancer since 2008, spread to his liver and lung, but currently in remission for three years after  several ops and months of chemo. It was awful as our triplets were only nine when he was diagnosed, full story on my profile. A year ago he developed a slight tremor in his left hand, the oncologist told him it was probably a benign tremor caused by the trauma to his body. The tremor got worse and other symptoms appeared, leading to a confirmed diagnosis last week. Another big hurdle for us all. He is angry, upset, scared, is cruel after everything he has been through. He is a very private person, doesn`t mind me joining forums/groups for support but he won`t. I joined the Macmillan site and it was my life line, so much help and support not only for Harry but for me and the kids. He has just started the medication and atm its making him feel slightly nauseous, he is used to that with the chemo. Hoping to find words of hope to help me cope. Thank you.


#2

hello

you have come to the right place. Compared to what you have been through, this shouldn't be too much trouble. Its not as devestating as the loss of a child, its not as dangerous as advanced cancer.

If you are lucky (!) the medication will work well. If he is on Dopamine Agonists (eg requip) keep a very close eye out for unusual sexual or gambling behaviour.

Hopefully for you Parkinsons will be a very slowly developing disease and treatments are improving rapidly.

best wishes

t


#3

Hi Triplet

I was saddened to read your heartfelt post. It seems so unfair that some people sail through life from birth to very old age, taking risks, eating & drinking all the unhealthy things, with hardly a blip, while others, like yourselves seem to have one misfortune after another. Understandably Harry feels angry, upset and scared. I expect you do too.

You posting makes me wonder how much input stressful life events and chemotherapy have in the onset of Parkinsons. I too have had these in my life, although the chemo was about 17 years ago, and over the last year have developed a "movement disorder". A recent DAT scan showed reduced dopamine cells which my consultant says indicates it is "probably Parkinsons" but is doing a "time will tell" diagnosis. I asked at my last annual cancer checkup about possible longterm chemo effects and the consultant researched this, but came up with no factors. But, I still wonder, as there are so few long term studies. 

Anyway, this doesn't help you currently - regarding nausea, if the medication is Madopar this can be taken with an antisickness drug (domperidone, I think), or eating a small biscuit with it often helps. Do you have a Parkinsons nurse in your area, who will give you all sorts of invaluable advice, or some other person you can turn to for counselling. Or contact the nurses on this website. 

I do hope that your triplets are able to bring some joy, laughter and positive thinking into your house and lives at this difficult time.

All on the forum will be thinking of you.

S

 


#4

 

Hi Triplet

I know its devastating for your husband to find out he has PD on top of the cancer, but you also need the support to cope with all thats happened and with children to care for also. On the website you can find out who your local parkinson support worker is, also your local parkinson nurse, both of who are a mine of information and offer a lot of support. If you need to contact parkinsons for any advice on any thing just phone the number at the top of the page and they will advise you on a lot of things. But otherwise still keep posting someone is always on here to talk to.

 

Regards Sheffy x


#5

Hi and thank you for posting back to me, don`t feel quite so alone now! The drug he is on is Mirapexine? Probably spelt it wrong, he is taking 1 twice a day for the first week, then 2 x 2 then 3 x 2 by week 3, 18mg dose. It all seems abit confusing atm but I expect we will get used to it. Tonight I detected a small change in him, he is not a talkative person normally but from 5pm until I went to bed at 10pm he chatted non stop, it is not like him! Could that be a side effect? We were told the Parkinson nurse would be in touch that was a week ago today but nothing so far. There are apparently three PD nurses at the hospital he attended but it is over 30 miles away. Our nearest local group is about 10 miles from here, shame as I thought there would have been one in our town. Is there a lot of difference with the medications, I haven`t read it all yet!  Thanks again. smiley


#6
Hi The Mirapexin is a dopamine agonist in that it mimics the effect of leva dopa which usually gets prescribed later on. All drugs can make you feel nauseous. I'm lucky in that respect but I take mine on an empty stomach or they don't work as well. Now onto the side effects... It sounds like he's experiencing the loosening of his inhibitions, great for conversations, until he starts saying what's really on his mind. Our inhibitions or self control are really what everyone else sees as our outward personality. When the shields come down it can be quite alarming and the words can turn into actions like taking risks with money alcohol drugs libido food etc. You and close family/friends must channel your feedback on the changes so that he gets a reliable consistent message on how he's acting differently. It can be kept under control With regards the future the younger you get it generally the slower it seems to progress. Definitely time to see the triplets make you prouder year by year. The body seems to let PD take over the role of the worst condition you have. Take care

#7

what!!!!!!!! i hope you are mistaken. the max recommended dose for mirapexin is 3mg. I take 1mg.

please check out his medication and dosage.


#8

The dose per tablet will be 0.18mg

 

http://www.drugs.com/uk/mirapexin.html 

Not an unusual start dosage

Apologies, just realised Harry must be about 73 now.  Still, PD progresses at different rates for everyone.  I do hope it takes longer for you.


#9

Hi yes I meant  0.18mg. He is ok today, fed up he can`t go to his allotment as its raining. Tomorrow is another big day, back to the hospital for his latest ct scan result for the cancer, fingers x`d.


#10

After what you have been through this diagnoses is only a blip in your lives, medication is good, PD can be managed well. I would normally say it could be worse but you know that and lived through it.

Be strong, brave, positive (vital) and dont forget to be there for each other.

Good news must be close by, tomorrow I hope.

 

xx


#11

Such a kind post terrific, thank you.......x


#12

Hi good news today, the ct scan for the cancer is all CLEAR! Such a relief, she talked about what they would do if it returned whilst he is taking the meds for Parkinsons. Fingers x`d it won`t come back!


#13

That's brilliant news! So pleased for you all.

S


#14

is there a setting so that new posts show up in my hotmail box please?


#15
I had been thinking about you, wanted to know but didn't want to be nosey. I thought you were due a little good luck. You must feel a lot lighter after all that worry has been taken away. So pleased to hear it. xx xxx

#16

Yes it was a huge relief, enough to be thinking about atm, another 6 months reprieve before the next blood test. Still no word from the P nurses, is that usual? Would be nice if they just called to say we are in the system!


#17

 

Such good news for you Triplets on both aspects I'm please for you, and sincere good wishes to you and your OH. With regards to the parkinsons nurse, I'm afraid I had a very long wait before they contacted me because they are so busy. My physio intervened in the end and set the ball rolling for me,so good luck with that.My GP was no help at all. 

 

Regards Sheffy


#18

Hi Triplets, thanks for your question. There isn't a setting for email notifications for new posts (although there are email notifications for any personal messages if you choose to use that option any time). There are a few things that can help you when you get to the forum though:

  • When you log in to the website you can see 'My latest discussions' on your personalised profile page - that means the latest updates to any conversations you have been involved in.
  • At the top of the forum there's the 'Active topics' tab, so you can see more easily in date order which topics have new comments.

I hope this helps.

Sharon


#19

My experience of pd nurses, even if you have to wait for an appointment, it will be well worth the wait.

Not every area is fortunate enough to have a specialist nurse, I know that is not much comfort to you today, but like the catchphrase that Miranda says 'bare with'.

 


#20
Hi Im new to the chat room but my husband has had Parkinsons now for nearly 2 years. I looked on the Internet for the local Parkinsons Nurse and rang them and the support worker. I then went to a meeting where I found everyone very welcoming. A speaker came before Christmas my second meeting and I had the opportunity to ask questions about her research and findings.She told us all that they are close to putting a new drug out that could halt the disease in its steps. It was a very reassuring visit . I intend to go every month now and am collecting for the charity this month to try to give something back.