New to forum


#43

Hi Rosy
I have been diagnosed for 6 years and had it at least one year earlier.
Like you I have coped ok but also now struggling with balance,stiffness and walking.
I had a chat with the consultant and have to increase selegeline from 5 to 10mg.
I am on Madopar and selegeline .I am on a high dose of Madopar.
Hope this info helps
Cheers Anne


#44

Hi Keith,

There is some good people out there and talking does help. If I can help just one person to smile and feel better then it’s all good. Here’s a couple of jokes for you:

Having sex with someone with PD is like having a human vibrator. My husband’s consultant told him if he increased his medication he will get involuntary movements. My husband said fantastic I’ve always wanted to play the piano.

Keep smiling,
Take care Keith


#45

Hi Rach
once again , thank you evey joke you tell brings a smile to my face , even my wife found that funny
since this started , sex crossses my mind but no motivation, which is unusual , ( typical man )
god knows what will happen when i get the meds , looking forward to that side affect , dont know if the wife will feel the same way

joke for you
how do you know when your dog is unhappy with you ?]

it sits in its bed licks his arse , then comes and licks your face ,

glad i dont have pets

take care , have a good weekend , best to hubby
keith


#46

Hi A1YMO

Sorry to hear about your father’s problems., particularly with Sinemet. I was diagnosed only in January this year and put on Sinamet Plus. I have had no side effects whatsoever, fortunately, and my hand tremor has almost disappeared. Everybody seems to react differently. Sending you my best wishes for a quick answer to this problem.
Good luck
Knine


#47

Thanks for your comments. It does seem that everyone reacts differently to the various drugs. It’s so frustrating not being able to find anyone else with similar side effects. Our PD nurse says he should try and stay on Sinemet in the hope that things get better but as he’s tried to explain he feels worse than ever on this drug compared to all the others he’s tried. The side effects are listed as everything he’s taking the drug to prevent/help! Crazy!


#48

Hi rosy
My dad is taking Sinemet and feels so much worse on this drug than any others. Problem is since starting medication 3 years ago he’s had a muzzy head problem -like permanent head cold/hangover- which makes him feel so bad. It’s not dizziness. I’m trying to find out if others have experienced this with PD as neither consultant nor PD nurse have and therefore draw blanks regarding any advice or help. He’s tried several drugs but since being on Sinemet symptoms have got worse and he now has slight tremors in hands (again something he never had before). PD nurse thinks he should persevere but his quality of life is virtually non-existent at the moment as he can’t go out due to feeling so poorly. To say we’re frustrated is an under-statement!


#49

Hi Rosy

Sorry to hear you have been struggling lately. Hope things may be getting a bit better now. I was diagnosed in January, but have probably had PDf or 5 to 7 years, and put on Sinemet plus straight away. I have had no obvious side effects and my hand tremor has more or less disappeared. I still have the other problems I had before, which, to my mind, are caused by the chronic arthritis I have had for many years. It is really difficult to know what is causing what! Things don’t come with labels.

Exchanging views and experiences on this Forum really helps. There are so many different drugs avaiiable, and we are all so different. It must be a nightmare trying to select which will be most appropriate for any individual. I guess it will always be by trial and error.

I have just taken delivery of some Urban walking poles to see if they will help me get about - I haven’t been able to walk far for a long time, and hope to get out into the garden once we have some better weather.

Kep in touch and let us know how you are progressing.
With best wishes for s speedy solutrion.
Knine


#50

Thank you for your interest in side effects of Sinemet. Like your dad I do not go out much, the ‘wearing off’ periods are getting longer. I wonder if my Sinemet is over-prescribed, I think I’m on the maximum dose, although it is difficult to get the facts from my consultant. Everyone seems to have a different combination of tablets. At least this forum allows communication with others of similar problems.


#51

Hi I to am on sinemet having tried all the others even tried Apo go injections and pump. They all were no good just made symptoms worse and added a few more to the mix… If i could rewind my life back to 2013 i would try all complimentary medicines from life style to exercise and going chiropractor, physio ,vitamins. Also listen to a man on you tube that explain most of PD comes from some part of issue within the spine could even be 10 years prior to getting Pd symptoms… For me this is true for me cos for years of care work and bad posture, and 3 years prior to Dx i had MRI on my back the results being that i had spondythosis pars defect on l4 l5 of my lumber and a budging disc with exposed nerves. Now with multi health issues i’m
trying to deal with symptoms with all complimentary meds to hopefully then reduce the sinememt or even come off all together. I have to say it’s a real struggle some days when u just think oy symptoms can u not just back off an give me a break an still try an be a wife, a mum, a nana, a friend an somewhere in it be myself… anyway i waffled enough to send any of u having trouble sleeping to sleep…Lol…


#52

#M3
My Husband diagnosed 2yrs ago after hip replacement Surgery 75.He has always been an introvert. Now he has shut down completely. Rarely answers the phone or door. He’ll make himself Breakfast/Lunch but that’s all, I want to encourage him to do as much as he can. He can put bin out if I ask, won’t unlessI do. No chores whatsoever. I don’t know wether he can’t or just won’t. He’ll make the effort to go to support his football team that’s it. Played golf was Captain of his club it’s all gone no interest sleeps a lot. What can I say at Dr appointment soon. I’m at my whit’s end.


#53

Hi @M3,

A warm welcome to the forum.

Although I cannot make a medical diagnoses nor am I qualified to do so, it sounds to me like your husband could be experiencing depression which is common for people with Parkinson’s unfortunately. However, with the right help, support and treatment your husband can overcome it. We have a lot of information on how he can get help on our website here.

In addition to this, I strongly recommend that he consults with his GP or a Parkinson’s nurse to make sure his Parkinson’s medication are working well. If you contact our helpline service, one of our advisers can arrange for a Parkinson’s nurse to call your husband back within 24 hours so that they can speak to him in detail about your concerns.

I hope you find the above information useful and please keep us posted on this.

Many thanks,
Reah


#54

My husband is newly diagnosied although I think he has had PD for sometime. I am struggling with the lack of face expression because while I understand why he shows little emotion towards me now. it feels like I am losing him when I need him the most. I have aleays been able to look at him and know what his is thinking and now - not a clue.


#55

Hi ChrisE
Im Keith im 52 yrs old
It doesnt matter about all facial expressions i have that problem to sometimes
But i dont need to wear my heart on my sleeve to prove i have one
When he says he loves you just believe him , because i know its hard for him to and you are NOT losing him , his love for you wont change
Take his hand , the expressions he cant show visibly you will feel them through his touch , its amazing
( Besides what husband wants his wife to know what he is thinking all the time i didnt )
My wife went through the same , she thought i was falling out of love with her because i couldnt always show it
But nothing was futher from the truth
You will learn new signs , my wife did
Dont feel dis-hearted, you may not see his facial expressions but he can see yours
This isnt an easy fix
Be there for him as he is for you
You dont need to see his face to know whats in his heart
Doult is the hardest thing to contend with
So dont doult his feelings because he cant show them
Feel them through him
Love is stronger than doult

Im here if you need a friend
Mesage me on here or private message
Keith


#56

I do know all that I really do its just that we are thr couple that have communicated non verbally for so many years a quick look across a room etc and now thats gone at the same time he has lost his hearing and I cant ask him anything quietly or without repeating it 3 times. We have to relearn our communication. Thanks for answering.


#57

Chris, don’t let Parkinsons be an obstacle to you, fight it in the way you know best, get your husband back, he is not a lost cause, find that new path to rekindle what you had. Take a positive stance and take the beast by the horns, where there is a will, there is a way and you will overcome the difficulties you’ve been going through. Think positive, you and your husband can beat this. There are plenty of people on here who will give you the support you need at this time.

Les


#58

Hi ChrisE - It’s not an easy thing to live with for both of you, it’s like starting off all over again, and you have to give and take a little bit more. It’s not easy to understand the problems that come with Parkinsons either. All I can say is be strong for each other. Anything you want to air on the forum or shout at, or question then we are here to give you support, so fire away :hugs:

Sheila


#59

Hi .just joined forum .not sure what to do ?? I suppose I just write whats on my mind. Im 49 diagnosed just over 3 years ago.having terrible time at moment with depression .no sleep . Walking gone again
n. Been on ipinniaXL 8 mg last 3. Years. Last 10 months also on et 12.5 / 50 mg sinemet .helped at first but now can’t walk most time get severe cramps in left foot screws up into. Tight ball can’t even out it down so frightened to go out on own because got stuck at side of road for 20 mins couldn’t get across so had major panic attack so put me back again.they have changed my ipinniaXL to requip XL because of supply problems wondering if it because of this change?? looking at my repeat prescription they changed it again to repined 8 mg XL so that’s going to upset things again .does anyone know if ipinniaXL 8 mg coming back to NHS? Also as anyone please got any feedback on my meds please please . sorry to ramble on not usually like this but desperate.going through menopause also & got menierres disease also .


#60

Welcome to the Forum Potter. You have done the right thing by initially writing down all that is going on in your life but if you look at the top of the Forum page you will see Information and Support, have a browse on there and there should be some contacts you can speak to who may be able to help you through what you’re going through. Sadly I can’t help you other than with what i’ve written, we are all different with different side effects but we are here to help you if we can. Take care and keep us posted with your situation. All the best.

Les


#61

Hi @Potter,

A warm welcome to the forum.

Firstly, I;m really sorry to hear that you’ve been battling with depression - unfortunately, this is quite common for people with Parkinson’s to get depression. However, we are help to you and you don’t have to go through this alone. If you haven’t done so already, I’d recommend you consult with your GP or a Parkinson’s specialist to make sure your medication is working. You can also check out the Parkinson’s UK website which has a section on depression - you can find this here, https://www.parkinsons.org.uk/information-and-support/depression. You’ll find a list of useful list of contacts which I’m sure you’ll find very helpful.

If you need additional support, feel free to contact our helpline on 0808 800 0303 and one of advisers will be happy to help you.

Hope you find this information helpful.

Best wishes,
Reah


#62

Thanks reah