New to forum


#1

Hi my name is Annette and has only just heard about this forum even though I don’t have pd my husband has and has been diagnosed for about 4years now. But he is still finding it hard to live with it. Hopefully on here I can find anyone who feels like my husband so he may come to terms with his condition


#2

Hi Nettie - surprisingly enough most of us on the forum had trouble with believing the initial diagnosis of parkinsons, so hubby is not on his own! Also it takes some longer than others in finding it hard to live with, I’ve had it for eight years now, but can still easily get upset on my off days, but soon pick myself up and soldier on. Life doesn’t have to stand still, we just have to take one step at a time and jump each hurdle as it comes along, stay positive and focused and he will get by. If hubby goes on the forum himself he will soon get ‘chatting’ with others PWP and realise it is not all doom and gloom, we have some talented folk who contribute to ‘entertaining’ everyone with their many poems, jokes, etc., in the Social Club section.

Hope he soon joins us, and all the best - Sheila :rofl::rofl:


#3

Hello Annette,

I have Parkinson’s and my wife is having a hard time with me as well. I find it hard to accept as I have always taken good care of myself. It seems not fair. I know this is not a logical approach.

I recently started keeping a blog (http://livingwithparkinson.com). I share some of my stories and it makes me feel better to express my frustration.

I wish you all the best
Niko


#4

Thanks for replying my husband is no good on a pc but I can always answer for him which will help him. It’s good to see he is not the only one who feels the way he do even though it’s not good for anyone to feel the way that they do. I try my best to understand how he feels but not he can see he is not on his own and can try to move on. Annette


#5

Thanks for replying and I will get him to check out your block may help him to move on


#6

Hi Niko, not wanting to sound feminist but I have noticed over the years that the men seem to be less willing to accept the diagnosis of parkinsons compared to the women, I don’t know if it is because of the male ego and masculinity. As I said sometimes I could sit and cry, so you have done the right thing starting your blog it’s such a good idea, I wish I could do one!

Take care and all the best - Sheila


#7

Just read your post,and can understand the unwillingness to accept the diagnosis. Personally I found the confirmation a releif, as I finally knew what I was fighting aagainst


#8

Hi speaking as a six foot plus and 16 stone plus bloke, yes it is hard to accept you have an incurable brain disease. All I can sort of likening it to is if I was a football player playing in the premiership and then suddenly being dropped to the Sunday league overnight is hard to take in. I was diagnosed in Jan 2010 when I was 53 and used to work as a train driver on the underground who were massively supportive. My neurologist told me I wouldn’t be able to work as a train driver again, which knocked me for six as I’d been doing the job for over 30 years but with the support of my manager and my determination I managed to resume my driving duties for a further year after about six months of light duties. I had to give up in the end as my reactions were getting too slow for my liking, it was hard to accept that was the end of my career but at least it was my decision. I think with older men like myself it is all about being used to looking after your loved ones and having control of your life. I always accepted I had parkinsons and I told all those close to me straight away, but I’ve always tried to be positive and will continue living my life as normally as I can for as long as I can.


#9

Hi, Nufcash,
I can see what you mean about any serious diagnosis being difficult for men. My husband was diagnosed with emphysema a some years ago. As an active man it knocked him for six. He’s had to make a lot of freestyle adjustments but all credit to him, he’s managing his disease well.

This is going to sound weird but I think my own PD diagnosis (2016) subconsciously helped him a bit in that he feels he can do his bit by helping me when needed. For my part I look at him managing his emphysema and find myself thinking - “at least I don’t get breathless like that, what am I moaning about.”. I had half expected my own PD diagnosis but it still knocked me sideways for a while.
And so we seem to be propping each other up, works for us anyway. We all have different coping strategies don’t we. D


#10

Your first dozen words describes me, so we are pd twins!! However, I found not knowing harder to accept, with everyone saying it will be stress, you’re redundant that’s all, get a job you will be fine.

With help I did get a job, actually a better one, but my foe is always picking fights, most of which I currently win or at least a score draw.

Positivity helps, as does faith in whatever you wish to hold as your baseline.

Cattle die and kinsmen die,
thyself too soon must die,
but one thing never, I ween, will die, –
fair fame of one who has earned.

That is what I strive towards, reputation of one who never gave up


#11

Hi Geordieparr, Love it! I now have a PD twin & he’s a geordie! I follow the mags (although I’m not a geordie) ever since the 70’s when me dad used to take me up to Middlesborough to see me battleaxe of a gran. I used to read the back pages of the gazette and see the reports of the magpies & the pictures of the lads in the famous black & white stripes & I was smitten lol! You are right NEVER give up to PD just get on with life as much as you can. People said to me after I had DBS “you are so f$%&ing brave” to which I replied " are you having a laugh? When the options are live as normal as life with PD as possible or become a miserable cripple sitting at home waiting to die and someone says here’s your chance of your life back it’s a no brainer".


#12

Hi All

My husband is a fellow PD Warrior diagnosed age 40 he’s 50 this year ! Managed ok for many years by ourselves struggling now in need of some help & support. We only get to see the PD Dr or Nurse every 6 months his condition has deteriorated and he is very down at the moment I need to bolster him up find a younger support group nearby to show him he’s not alone & get him exercising etc … any suggestions would be welcome . This is the first time I’ve done anything like this


#13

Hi @Luckygirl,

I’m sorry to hear that your husband’s condition has deteriorated. There is a lot of help and support available to people affected by Parkinson’s and we have this information on our website.

I would also encourage you to contact our helpline on 0808 800 0303 and one of our advisers will arrange for a Parkinson’s specialist to contact you with 24 hours. Many of our members have found our helpline service to be incredibly useful so do give it a try and keep us posted on your husband’s wellbeing.

Best wishes,
Reah


#14

I have tried ringing local advisor not heard back will try again later. It’s just so hard for him he has other health issues as well he is a insulin diabetic and has lower back disc degeneration to deal with too.


#17

Hi I’m A1YMO and new to the forum and looking for help/advice for my father who was diagnosed with PD jus over 3years ago. He was borderline for treatment as only had weakness in right hand but consultant thought it was worth trying. Within 2 weeks he had awful symptoms of a constant muzzy head - something he’d never had before. He’s been tried on Rosagaline, Madopar, Pramipexole, Amantadine and now Sinemet (this is worst one so far for symptoms) but all have given him this awful head. He’s tried stopping all drugs at various points but unfortunately the head problem has never resolved. I’m trying to find out if anyone else has this problem as consultant and nurse don’t seem to be able to explain why he’s got it as it’s not a typical symptom of PD. My poor father wishes he’d never started medication as only had hand weakness before. Any help/advice would be greatly appreciated. Thanks in advance.


#18

How come there is very little support for younger PD Warriors and their families Some have to carry on working and are not always available for day time meetings ! Feeling very isolated :grimacing:


#19

Hi A1YMO, i’m sorry to hear about your dad. The problem with PD I’ve found (besides being a pain in the neck) is that there are so many symptoms with PD some well known and some not so well known. I’m not sure what you mean by a “muzzy head”? Is it like a head ache or is it dizziness? I I had a problem with the room spinning round like I was in a spin dryer and it turned out to be an imbalance of the crystals in my inner ear called Octoconia. Has he had a scan? If the answer to the latter is no it might be worth asking the neurologist about having one. It seems to me ( and I’m not medically trained just another person with PD) that the reason the nurse & consultant are saying it’s not PD is that the PD drugs aren’t making a difference to his head because he’s still got a muzzy head when he does’t take them. You could always ask for a second opinion. The experts don’t know all the symptons of parkinsons as there are so many some common and some not so common the real experts are people with PD, well that’s what I think. Anyway I hope your dad gets his head and symptons managed soon.


#20

Thanks for your thoughts Nufcash. The muzzy head is hard to explain but like a hangover/head cold permanently. Not really dizziness although can be unsteady on standing at times. He finds sitting down the only way to cope with it and even then it’s still there, so spends most of his time sitting. Recently he has been going out for little walks (he’s 74) and copes well with these. He hasn’t fallen because of it but he doesn’t feel safe going too far from home. He did have a scan near the time of diagnosis, so over 2 years ago now, but that just looked for signs of degeneration regarding the Dopamine producing part of the brain I believe. We have thought about a second opinion but not sure where to go and our consultant said they’re all up on the latest treatments anyway so wouldn’t be much point. I agree, the best people are those with PD hence my joining the forum!


#21

Exactly my thoughts, no brainier…erm ok… make that partial brainer as the rest is refusing to cooperate…

Supported the Toon until Rudd Gullit arrived then saw the future and walked away as it was far too close to the past. Dunfermline are my team now, and the parrs b+W stripes are as close as you will see me to those at SJP. Not a glory hunter, just got sick of being taken for granted


#22

Hi ya, My husband was diagnosed with Parkinson’s when he was just 40,he is 53 now. I know exactly what you mean about lack of support for younger people. I’m 39 and we have basically dealt with it on our own. We were coping with it for many years too, but now our lives have changed significantly. His consultant is good but they just ask the same questions and make him do the birdie song as my husband puts it. Every six months is the same. My husband is getting worse as he is stumbling and having falls now. I know what you mean about feeling isolated, I am getting that way now as I’m worried to leave him by himself due to his falling. If you ever need to chat, please don’t hesitate.