welcome sleepless, im 42 had pd for 8 yr hope you find this site helpfull ! gus
Hi, I was diagnosed last year at the age of 44, it was a shock but as there is nothing I can do about it so I kind of go with the flow so to speak, I do worry about what the future holds and wether or not it will affect my children. Trying to keep a positive attitude helps as none of us know what is around the corner. 
hope you're able to come to terms with your diagnosis soon x
Hi there
im 3 years in now and apparently had along time before. All is ok I try to gods
to the gym, some days I fly some days I flop. But I to try to laugh but that's because I deal with
it that way. Really it sucks but I'm getting there. I try to get out with friends etc but I know I need
to check things as feeling so tired
at mo. Keep chin up try enjoy what u can :)
jules
My advice to anyone with PD, is to enquire about Conductive Education in your area, and if possible get started with CE asap after diagnoses.
Thanks guys and sorry for the radio silence. Been sorting a few things out and haven't really been on the computer.
Had my first appointment with a new Neurologist / movement disorder specialist who has a special interest in PD at Southern General Hospital in Glasgow last Saturday morning.
It was my intention to tell him I would rather keep off the meds for a while longer if possible, but during the course of our appointment we both agreed that the time was right for me to start Levadopa treatment.
I haven't started the treatment yet. My prescription has been delivered and is staring at me from the kitchen cupboard. I'm sure I can see it looking at me. There were quite a few questions I forgot to ask during my appointment and I have decided to go and see my GP (who is very supportive and easy to talk to) just for some answers regarding side effects etc prior to taking the first pill.
To be honest I'm bricking it. Finding it a challenge to accept that once I take the first pill that's me for life.
On a positive note I have taken a year off work to get myself in order (if possible), and so far I feel a relief from some symptoms. Spending my days working in the garden and on the house (some what slowly, but I actually quite like it that way) and it is so good to feel the stress of my business oozing away.
Hi ,everyone, I 'm returning to the forum after a few years. Not many changes in the general comments,we're human I suppose and tend to react in the same way when presented with so little concrete information re. the disease.Some people say we.'re fortunate,we don't have cancer,though why they should think having PD excludes us having multiple problems surprises me.
Initially we are told. - get yourself interested in a new activity- good idea- mine was and still is chickens also,gardening and when I have the energy I can see the point.My beloved dogs cannot be replaced because I cannot commit myself to always having the energy to give them the daily life they deserve,I miss them dreadfully.I was diagnosed .5 yrs ago and ,yes,there are positives,but let us be under no illusions that life is irrevocably changed.I know that my 83 yr old husband and the rest of the family chose 'not to see the elephant in the room' and this translates into things being as they were,which of course they are not,but how to tell them how it is without being brutally honest?
Polymyalgia rheumatica is probably adding to the stress level ,I understand this is not an uncommon combination.I have had the two concurrently for 3 yrs now.
The maxim has to be 'keep taking the tablets on time' and realistically approach each day with guarded appreciation.There are some good days but PD wears you down by slow attrition don't you think?
Hi Wee Jock
i understand it can feel like a life sentence - but concentrate on the "life" bit. PD is a chemical problem, and it's only manageable by taking chemicals. everyone's different, but my view is that i'd prefer jam today and who knows what will be available tomorrow? By taking meds now i'm able to work, sleep, behave pretty normally. It may be for life - but I now have life.
Practical note: have you discussed the possibility of not starting on levadopa but on a dopamine agonist? You have to be v careful of side effects - but it may feel a better compromise for you. Of course, your neuro may have already ruled it out for you.
Whatever, enjoy working on your house and garden.
Best
Semele
Hi folks
Haven't posted here for a while so thought I'd check back in. Just to say this is not a post that is terribly positive so if you are having a wobbly day perhaps it would be a good idea to stop reading.
I think my diagnosis is finally sinking in but having said that I'm discovering that a grieving process creeps up on you sometimes doesn't it? I'll feel ok and then one morning...
My main symptoms are problems with gait and balance with moderate tremor/stiffness... all in my left side, and fatigue. I've also suffered depression and anxiety along with sweating a lot facially ( that'll get you a date on a Saturday night ) and memory problems.
I guess my problem with walking is the hardest to come to terms with as it is so very fundamental to day to day life ! It's really affected my confidence as when you can't carry yourself around with ease it leaves you feeling vulnerable. I used to be a full time yoga teacher and had a strong daily practise including handstands. I've gone from a fit 35 year old to a 38 year old who feels considerably older than his years !
It's also REALLY hard to see other people's reaction to my walking. I had no idea people could be so insensitive, cruel and rude. I'm a pretty shy person and before PD, when out and about I liked to go unnoticed, but now this is not an option. It's the hardest adjustment for me.
Parkinson's UK have been supportive and obviously do great things, however I was really upset when viewing the DVD they sent me on living with PD. As a young person with the disease I was shocked that nobody featured on the dvd was under 40. As a single person I was shocked to see that nobody single was represented. Based on the dvd it would seem that PD only affects older people in established relationships ! Primarily white middle class people in relationships...with gardens. I can't help feeling that the rest of us are ignored because it doesn't make for good viewing. Having PD at any age, in any situation can be rough and I'm not suggesting anything makes it easier just that there are some of us who face it young, single, broke, no job, no home, no family support at all....and no bloody garden.....I know it doesn't make for a happy ending but we are here !
Sorry folks but had to get that off my chest. I hope this finds you all on a good day x
Scott
scott its good to get it of your chest i was a bit like you when first dx at 34yrs went to my local pd group sat there all they were interested about was there day outings ,rich tea biscuits & pg tips ,poems not my ideal of tackling parkinsons so decided to go head on at it & get the best treatment going pd ,gp and neurologist were right with as they could see the determination i had to deal with this condition! . i do get my weepy moments but snap out of them quickly i also have bought a walking stick from the pd shop !! bright blue with writing on it saying parkinsons had this about a year now & people look at it and give me time & space.chin up scott & fight it go to gps ,im on amitripyline there antidepressants but also good for nerve pain! talk to your pd nurse say what your problems are ,see your consultant there are meds out there & pd physiotherapist to help you with walking & balance.!
Hi there, haven't been on for a very long time. It is now three years on since my husband was diagnosed at 52. We have alot of bad days and not so many good I'm afraid... He is fine physically, still plays football twice a week when home, goes to the gym most days and takes the dogs on long walks he also still works offshore and has been told has a job for life and if he gets worse he can work onshore. However, the problem is my husband has Crohns Disease and had a Rodent Ulcer removed from his forehead last year, however, he thinks every little ailment is life threatening.. He is always looking for the worst outcome, if he has a new spot (which are frequent as he perspires quite alot) an ache from the gym, or his urine is dark because he is dehydrated he makes it into a big drama. He has been tested for absolutely almost everything, we have been to specialists through the NHS and paid for them privately aswell, and has been told he does not have skin, kidney, bowel, lung or any other cancers but he is so insistent that there is always something wrong, he is also not convinced it is PD he thinks he has motor nuerone!! He has been for counselling and we are no further forward we are looking for a CBT Pshycologosit just now... My question is, is this it forever forward, the minute he gets up in the morning to the minute he goes to bed he will ask the same questions over and over, his answer is its understandable. As his wife I sympathise and understand to a certain degree with the once outgoing bubbly man I married to the so insecure needs reassuring constantly person I am living with. He says all he needs is reassurance, which he gets but doesn't believe a word we say or any doctors tell him, he will give himself a heart attack if he goes on like this. He only has a very slight tremor but it becomes very obvious when he is anxious and at the moment is constant. Maybe hypnosis is the answer..... I have had the depression tablets and actually went for a weeks holiday alone recently (well to see my daughter as she was in OZ with her work) and that is where she was born and I grew up, and when I got back I felt I could tackle mount everest and all would be great..... Well 6weeks later and i feel like I did when depression hit and I can't seem to pull out of it.... We don't have conversations anymore, its all about my husbands ailments and what he may or may not have... He doesn't ask how I am getting on or feeling, if I am having a conversation with our kids he thinks its his god given right to butt in without saying excuse me... he has become the most selfish and self centred person I have ever met and he never used to be like that. Don't get me wrong he is a man and that comes with its own pitfalls lol but I am at my wits end on how to tackle it from here on in. I'm sorry to have written a long winded letter, but nobody else seems to understand what I and (we) are going through. I did think that after 3 years we would be past the hard part of acceptance/denial etc, but everytime things are looking up its like 10 steps back..... Any other Carers/Partners have any suggestions, because at the moment I feel like walking away.. Linda
Hi Scott
So sorry to hear of your problems. I can really sympathise with you in one area, that of walking - I have difficulties with gait initiation, freezing and shuffling. I am not "young", being 64, but have always been extremely fit & active - walking everywhere and cycling hundreds of hilly miles for holidays etc. until a few months ago. Now I feel like 108 most days as I stagger around the supermarket, can't move when somebody cuts across my path, can't turn when I pick something up from the shelf etc etc. And cooking at home is a nightmare, takes forever as I stand stuck in the middle of the kitchen trying to get to the cooker to turn something off that is boiling over. As for the cycling, I have lost all my confidence and strength on my solo bike, the life saver is the tandem that my partner and I can still use, the only time I feel at all normal - until I get off at the coffee stop and I can't walk through the doorway . . .
So, what to do - it is really hard to make myself go out although I'm getting used to being embarrassed, as I feel really unsafe at times. And having to concentrate so much just to walk is sooooo tiring. I have started Madopar although my consultant warned me it probably would not help the walking. Actually I think it is helping, a little, as I feel a lot stronger in myself with better coordination and balance. But this only seems to last for an hour or so at a time and is far from a solution. Hope the effect will increase as I take meds for longer. Otherwise I have been taught cueing tips, such as moving weight from one leg to the other when frozen, or stepping backwards - all fine in theory, and I can do them all no problem when with the physio as an exercise, but using them in unexpected situations is quite different.
Not much help to you here, I'm sorry Scott, but I too had to get that off my chest.
All the best
S
Hello, Scott --
I remember your earlier posts and wanted to reply. Your diagnosis was less than a year ago, right? If so, of course you are experiencing periods of grieving! It takes a long time to accept such a devastating diagnosis as PD. And I suspect it is even harder for someone so young, still looking for that ideal life partner. I was in my 50's when diagnosed and remember telling my husband, who hated seeing tears, that I had to grieve for my health; it was the natural thing to do. He planned on being my caregiver. That was one of those "best-laid schemes." In 2012 he died of cancer. So I know something about how you feel at being alone, facing a worsening future.
But I think the key is to think about the present moment as much as possible, to be as optimistic as you can, and to keep exercising to your body's limit. That's about all we can do for ourselves; beyond that, finding the right combination of medications for your individual case is crucial. I don't remember whether you have begun meds or not. But if your gait is severely affected, it is time to consult your doctor. I delayed taking any meds until my symptoms (including gait changes) were noticeable and bothersome to me. Mirapex (a dopamine agonist) actually eliminated all my symptoms within a few weeks! Since then, PD has progressed and I've added other drugs, but I have had the disease over 17 years now, and I am still leading my normal life! It CAN happen. Like you, I tend to be self-conscious in public; but when symptoms are visible, I just keep going, knowing that the more I do, the easier it becomes to do it.
Sincere best wishes to you -- J
Hi J of Grey cottage.
Thankyou for your message, it gave me some comfort on a bad day.
I wanted to send a private message to you but couldn't work out how to, apologies.
That's terribly sad about your husband. I'm sorry, you seem to have been dealt some very unfair cards x
Yes, it was last September I was diagnosed, and I started 5 mg Selegiline just over 2 weeks ago. I go up to 10mg soon. So far no change to my symptoms. I'm just hoping it makes a difference.
Thanks again for your message.
Sending a big hug to you xx
Nostromo Hi... J is absolutely correct that grieving is part of the process. I was diagnosed 3 years ago after several years of miisdiagnosis. I went into my consultant as my cheery self and came out a wreck. I remember bursting in to tears saying " I have 7 year old child".
But I have come out the other side, after a long struggle and many demons, I have accepted I have to live with PD.
I had to give up work and slow my life down. Eventually we moved to Devon and live near the sea.
All is not perfect but it's better.
Now all I have to do is get everyone to realise when I'm having an off day..." I REALLY CAN'T DO ANYTHING"
Easier said than done LOL. Anyway I wish you all the best.
Neenag x
hello m8,
sorry to hear about your diagnosis, i was diagnosed with parkinsons myself in 2010 aged 29, if you would like to talk about anything, let me know.
nathn
Hi Nathn
Thanks for the message, I tried to send you a personal message in reply but the site didn't give me that option.
Sorry to hear of your diagnosis.
I'd be happy talk and share experience if you like?
Feel free to send me a private message.
All the best
Scott
hiya scott,
sorry for the late reply, i dont often use the site, plus been on holiday, yea im more than happy to share experiences etc..finally lol but same as you cant see a option to send private messages.
nathan
Hi reidn1
On the forum menu on the left of this page, you'll see an option for 'My messages'. If you click on this, you should go to the messaging system. Alternatively, you can click on 'My account' at the top of the page and you will find messaging, again, on the left-hand menu,
I hope this helps.
Ezinda
awww cheers Ezinda. thank you :-)
Morning guys
Been a while since I came on here, Well life has provided some challenges, disappointingly ones which have highlighted to me how stress really does affect. The need to eat healthy paramount, some physical exercise also, as the cogs become ridged and slow without the daily oil dose of pushing oneself to do something, no matter how painful. I'm looking to get something set up at home in the form of a mini gym as it's is unpredictable when I can exercise. So I need to take the opportunity when I can, I had a couple of occasions when I visited my local gym and frankly just froze. I think getting anxious does take energy out of me so the need to remove anything from my life that creates this is a focus. Unpredictability is a word that seems to rattle around for me.. But until my stresses are removed, I have some more challenges to face. Just hope the damage Is not permanent. Eg becomes the norm!
On a lighter note I want to thank the health support that is out there, I realise how lucky I am to have so many people who care. They are a credit to our national health service.
If anyone would like to meet for a coffee n chat be great!