New member


#1
Hi, I'm Luby and new to the forum

My husband was diagnosed with PD, aged 55, a year ago and we seem to be moving backwards instead of forwards. He is now on his 3rd trial of medication; starting with ropinirole, which brought about addictive behaviours, then onto amantadine, which another consultant didn't think appropriate, now moving towards azilect. He has had almost constant pain in his right leg for the last 2 months and talks of having to give up work. If he stops working, I worry about him being socially isolated, as I work full time, as he doesn't have any hobbies and isn't an outgoing person generally. I know he is scared of his condition as his mother was seriously effected by PD and dementia. It's like he is giving in to PD and I don't know what else to do to help him, and feel the loss of my strong man.

Thank you for listening to my early hours concerns

#2
hi luby,welcome to puk forum,im ali i been dx for 11 half years,im 43 years old.i understand your situation so much,and im sorry you feelin low cus of it big hugs to you,and also to hubby:smile:i had to give up work when i was 32,and felt like my life was over,i was extremly shy person,and dint socilize wit other people.but since havin pd,its made me become adifferent person,i used pd to my advantage,i do lot fundraising and leep my self busy with pd related things.now i no thats not everyones cupof tea when they retire early,but hey least im not sittin on me butt feelin sorryy for me self,thats when the depression sets in.now i totally understand if hubby has to give in work,how u both would feel,we dont think things will happin to us.the best thing for him and your self to do now is join a local pd group,and socilize with pd sufferers and carers,you will be welcomed open arms im positive,and then there you will find you can learn more about the disese as well as make new friends.now best thing is not to leave work if it can be stopped now,change of meds could be the solutionagin.im on sinemet and you will find that is nown as the gold standard drug for pd,may be a good idea. of mentionin this drug to his neuroligist and see how he goes with it.he only been dx a year,and im sure like others have got few more years of work left in him with the correct medication to help him.there lot of surport here on puk,and a very good helpline[number top of this page]please keep in touch and how things go,good luck to both of you x:smile:

#3
Welcome Luby,

It is indeed a worrying time for you and I can relate to some of the things going on in your life.
First and foremost getting the balance of medication is a bit of a lottery but in my experience they will/ did get there in the end.
Beware of the side effects and be watchful but don't let that rule your life. My advice is for you both to join a branch of PUK and attend meetings. Many enduring friendships start there and it was a great source of comfort knowing I did not have to do this alone. Besides the exercise classes we also have talks and events and other social activities.
Perhaps the most important piece of advice I can give you is to focus on the positive and concentrate on the good that this thing brings with it. Believe me there are good thing!
Giving up work is not easy but it comes to all of us sooner or later, it's just that we did not think it would be quite this soon. So adjustments have to be made, insurance policies checked to see if the have Critical Illness cover and perhaps a chat with your local Information Support Officer. PUK offers access to loads of information and the Forum provides the PWP/ Carer personal take on things.
Anything that we can do to help we will do but the rest is up to you!

#4
So DAs are out.
Amantadine may have had a depressing effect on him - see if he cheers up now he is off it. I know I did.
Azilect might help or might not.
Sooner or later he will be on levadopa. It will be interesting to see if he perks up then. He might be give an antidepressant too at some point which might help. Dont think that his current attitude is permanent. It must be worse for him than others knowing his mothers experience .
Give him time, it takes several years to adjust and get the meds right. You can't speed up the process, just try and be supportive but as normal as possible. Let him go part time if he needs to.
You are lucky, as my wife and I are, that you have your own career and an income.
cheers

#5
Thank you all for your welcome and helpful responses; it's good to feel your not alone with these things. I've found there is a weekly PD support group at the local church across the road from us and am going to go along next week. Hoping my husband will come too. I've told him about this forum today and he is going to have a look; maybe he will join.

Luby

#6
Luby
A warm welcome to the forum. I can sympathise with your husband feeling low and scared especially as he has experience of the condition. I was dx 7 years ago aged 39. I got scared and went into a sort of denial state for several years. It is important to stay positive and in my experience other people in a similar situation are crucial. The inmates of this forum and other people of working age will be very helpful when he is ready to talk to them. As Turnip says it can take time to be ready.
I work near full time for a super supportive employer. There are many things that can be done to make work adapt to the needs of PWP. In most cases you only have to ask. If an employer is unaware of what to do there is a great deal of support available. As Ali says there is a helpline staffed by superstars. They look like normal people (I have seen them) but they give superhuman advice.

I hope this helps and that you & your husband can draw as much support from the forum as I have done

Elegant Fowl