Newly diagonised


#1
hi, this seems very new to us, but want to be proactive, my husband was diagonised on Friday of last week, trying to understand what needs to be done now, and what and when we should inform organisations and authroties. hubby is 52, and has non tremor parkinsons, the neuroligist we have seen was lovely even when i started to get upset:), he has contacted the pk nurse and will meet her next monday, but has spoken to her yesterday and today,see our gp thursday this week, and see the consultant again in April.

#2
Is there anything we should do/not do at the moment?
filled out the forms for dvla, when they are sent off will phone car insurance companies. do others that he is a named driver on have to contact their insurance companies?
has anyone got any opinions of the drug mirapexin?

#3
hi
contacting the dvla is the biggy. shouldnt be a problem with insurance companies if dvla happy.let them know but shouid beok.
usually get a 3 year licence.
mirapexin is a dopomine agonist (acts like dopomine but isnt dopomine). there is a risk of unusual behaviour so. if your husband has a history of gambling be very watchful. other behaviours are increased sexual activity and widening areas of sexual interest, shopping, poetry (!)etc
on the other hand it might be very effective and put of levodopa for a few years.
cheers

#4
ps the fact that the next appointment is in april means nothing much is going to happen very soon. it can take a long time to get meds balanced.

#5
Dear - Wingnut love the name btw - Turnip has given sound advice but if I may add a little of my own :grin: get your heads together give yourself permission to be cross or any other emotion you want. This is all going to be very weird for a while, it's different for everyone I was dx 4yrs ago and my o/h came with me and yes she cried too! but 4yrs on I carry on working full time keep supple with exercises from physio's and swimming (although not going to win medals) I am on a D.A like your hubbie it's ok - haven't gambled did have an initial OCD bit shopping ( I never shop!!) but took some time out and it's calmed down, me and my partner now have understanding that if she thinks my behaviour is out of character she will tell me and if I don't listen she has cast iron authority to ring PD nurses, you can talk any of this stuff over with the nurse when she comes. Hope all goes well there will always be support here when needed.:grin:

#6
thanks for your support so far, my husband is a collector allready so i have no problems with that, wingnut was his choice, he has a hobby of collecting ww2 uniform, equipment, and we have 2 jeeps, this is where his concern really lies, cos he would be devastated if he canot drive his and i can drive mine. He drives 50 miles a day to and from work. So we hope the drugs that he takes will not cause him to many problems, he will start the drugs tomorrow as he has weekends off and can stay around the home with me. Doc prescribed him some anti sickness tablets today to help him through. He has a positive attitude and describes his medication as a engineering project, if they dont work he will try another one. He is much more calmer about it than I am.

#7
Hi Wingnut
I just want to agree with what everyone else is saying I was dx in 2010
I work in transport and really worried about the future I was given a 3yr licence but they removed my 7.5 ton truck
licence :frowning: with hindsight according to my pd nurse I could have contested it My insurers were fine and said
something along the lines of it was ok until my g p had a problem with my ability to drive safely
Regards Adrian
ps the jeeps sound great I collect old mini vans and motorbikes:grin:

#8
Hello Wingnut and welcome to the forum, but sorry to hear that your hubby has been diagnosed(dx, my advice would be the same as the others have already said. It takes time to adjust both physically and mentally, but it will happen. I have been dx for 11 years now and I worked full time for 8 years following my dx. Driving was a large part of my work and I managed ok, still do but Ive now changed to an automatic transmission car. I would say....just get on with your lives and take each day as it comes.You will find lots of support on the forum and if you have any questions just ask, there's always somebody around here that can and will help.

take care
Glenchass

#9
Hi wing nut
Like you I was 52 in nov last year when dx.i worry about the future.more for the childrens needs but I've been trying to find out how long have I been like this to judge my future condition.but it doesn't work like that.ive been told by friends I've been shuffling my feet 15 years ago(I can go back further)but this last year a tremor started in right hand although grip been going for 3year.choking when I eat.drag r/h foot.
I do my worrying for 5 mins at night when family in bed to sort my head.go to bed at 1-2 am.mirapexin on ..52mg slight headache and dizzy ness but still no benefit yet.
You have to live one day at a time and get your holidays abroad in just in case
All the best

#10
Mirexapin has helped me by speeding up my movements. It took me a year to get used you it, makes me sleepy during day, but for a long time caused insomnia at night.
As aready mentioned, it is a dopamine agonist which can break down the will power. I eat more and am tempted by sweet and fatty foods.

#11
Mirapexin , I mean.

#12
hi wingnut.

It must seem a shock to you that you've been diagnosed with Parkinson's, even though I suspected I had it, still a shock to hear those words.

I too was put on mirapexin, which although helped with the pain made me very ill,I tried to increase the dose but couldn't get very far because I felt so ill.like having a very bad dose of the flu. After six months. My neurologist conceded it didn't suit me and put me on Requip.

REQUIP does nothing for my pain but doesn't make me sick or feel dreadful.

my worst symptom is dizziness and a very weird head. Luckily I only work just down the road from where I live and although I drive for my work,visiting nurseries, I only go very short distances.
I go to Kingston University once a week, which takes about an hour there and back and I am finding it increasingly difficult to manage. Colleague shares the travelling with me and is having to do more and more when my head is bad. I don't know if it's the Parkinson's all the medication that makes my head weird, but as I've had the dizziness for years before I was diagnosed, I imagine it must be the parkinson's.
Good luck and I hope you get on well with the mirapexin.

#13
hi wingnut sorry to hear about being dx i was 35 when i found out now 45 tried all the meds just hang on in there you will have loads of ups and downs right at first feels like end of the wourld but its not believe me just the start of a new one its a pain takin tabs and stuff visitin hospitals docs its all new the main i main thing is dont stop talkin dont let him go into himself do it together its there its either live with or give up sounds harsh but there it is hope u 2 get threw this .don x

#14
ment to say if u want to get me by email no prolem

#15
thanks for all of your feedback, hubby gets to meet his Parkinsons Nurse tomorrow, we have to travel 25 miles to see her though as she has no nearby practise near us. Our doctor is referring us to the nurolical unit at a nearby hospital for physio, not sure how long that will take to get an appointment,
Rob started taking his medication yesterday was ok, but a bit sleepy in the afternoon and managed to go out for an Indian Meal with very close friends last night. He didnt sleep to well last night or so he says, but he was snoring as usual. Today he has been ok too, sos far only needing to take one of his anti sickness tablets, but he kept nodding off early evening, not sure if this was a symptom or he was just tired from lack of sleep last night. he is taken the next few days off work just in case the medication makes him tired as he can work from home, so if he has an afternoon nap someone will be home.
Have been looking at our local support groups but they are held in the afternoons and as we both work will find it difficult to attend, think he would like to meet other people who are going through the same thing as he is, so if there is anyone who lives in Ringwood or near by(hampshire/dorset border) would like to meet and talk with him it would be much appriciated,
Amanda

#16
Try looking for a Young Onset group - they generally meet at times to suit those of us still working.

I was diagnosed 6 years ago aged 45 and still work full time and drive - I do get extremely tired and achy, but its manageable.

I did find a local group, but unfortunately found it quite depressing. The upside though is that I found a couple of like minded local people and we have carried on meeting on a social basis. Its great to be able to talk to others about the condition and quite reassuring to know you arent alone.

Good luck - stay positive

#17
Hi wingnut

Welcome to the forum. I hope you are finding the space helpful. Do let us know if you need anything - you can contact forum at parkinsons.org.uk.

Take care

Luis
Moderator