Ruby 1 , Give yourself time and you will accept it. My wife said when I was diagnosed that if it had been cancer I could have been gone in a short time so as the saying goes there is always someone worse off than you. I suppose the main problem is the disease affects everybody differently so no one can say where you might be in 5 years I must admit that reading some of the blogs of people taking there meds horrifies me. Newly diagnosed people being put on huge doses of meds. I obviously can only speak for myself. I have had 10 good years. Now at this stage I can say the one thing that we all do without thinking is walking normally and its the one thing I really miss. I have no misconceptions about how I may end up. I watched my wife’s father suffer pd. I shall be up at 3 tomorrow morning, chuck the fishing rods in the car and go and watch the sun come up by the side of the pool. Another great day to be alive. DONT let pd ruin tomorrow ! enjoy each day as it comes. Hope this helps to get it in perspective a little.
Hi, I’m a new member. My husband has recently been diagnosed with PD and getting linked up with the relevant services. After the initial shock of the diagnosis, I started reading about PD and the treatments available. To be honest, this is the scariest journey ever… I’m watching my 52 year old husband slowly give up. Once so full of life, he’s struggling to come to terms with this new phase in life. I’m struggling. I’m looking forward to gaining further insights and swapping tips and ideas. Not sure if I’ve done this right… if not I’m certain someone will put me right.
Hi Yes you have done the right thing.
Just by saying what you have has started you on the right path…
I was 55 when.i was diagnosed.and also I have had rheumatoid athritis since ii i was 40.
Every day is different.
For me I’m.just happy I’m.alive.
Hi @Ladybird52,
A warm welcome to the forum.
I’m glad to see that you’ve already received some lovely advice from babswood. I’m sure you’ll receive a lot of support from other members but in the meantime, I thought you’d be interested to know that we have a newly diagnosed section on the Parkinson’s UK website which answers a lot of commonly asked questions that will be relevant to both you and your husband. You can find the page here, https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.
You can also contact our helpline and speak to one of our advisers about any concerns that you may have or get advice on a medical queries that you may have in mind. Please feel free to give them a call on 0808 800 0303.
Feel free to come to back to me with any questions and I hope you find the above information useful.
Best wishes,
Reah
Hello
I’m new to this forum…I was diagnosed with PD 3 years ago at the age of 57, my Neurologist said I would have had it for 4 or 5 years already. The diagnosis came a couple of days after I’d left my lovely home of 30 years - I was in the process of divorcing my husband, what a nightmare time it was - I was shellshocked and couldn’t believe this was happening - I am still in denial. I was lucky to fall in love again a few months later but horrified and embarrassed at having to tell my ‘new man’ that I had this incurable ‘old person’s’ disease - I still do my best to hide it from him. I do exercises every day to try and keep supple, pace myself because of the exhaustion and take my medication (Sinemet and Pramipexole), but it is steadily progressing.
My Grandad had this disease in the 1970’s, it was terrible having to watch him suffer and I dread having to go through that. Sorry to be so negative but sometimes I find it hard to stay positive…
Hi @milltowngirl,
A warm welcome to the forum.
It sounds like you’ve had a tough couple of years which couldn’t have been have easy for you. It’s great that you’ve found love again but if you need support with dealing with your divorce, it might be worth revisiting one of our threads on the forum which has a lot of great advice on how to cope divorce and Parkinson’s. You can find this here, Divorce and PD.
I’m sure you’ll receive some warm welcomes from other members in no time, but feel free to explore the thread above if you think it’ll be useful in the meantime.
Best wishes,
Reah
Hi All
Just joined the forum so though I’d share my experiences with you. I haven’t had a diagnosis yet but am sure it’s just around the corner with a visit to neurologist next week
I’m a 57 year old male that has always been very active. Ex military, played county Rugby and was a regional athlete so have been fit all my life. When in my early 20’s, I suffered a groin & lower back rugby injury which I didn’t rest enough that has come back to haunt me in later life with bouts of siactica and posture problems. Whilst the problems with this have been real and treatable, denial I guess has seen me use this an excuse for not accepting where I am today!!
About a year ago my wife noticed a tremor in my leg when at a family funeral which we put down to the emotion at the time. However, within the next few weeks I awoke to ‘internal tremors’ and more leg tremors when anxious or stressed. A visit to a consultant last August diagnosed Essential Tremor (which my Father had) but other symptoms now evident, albeit intermittent, have led me to believe me otherwise:
Tremor at rest in left leg
Left foot drop & walking problems
Unable to wriggles toes
Leg cramps
Softened voice
Stress and anxiety bring on the symptoms but most of the time I seem to be okay at the moment so am hoping to have caught this early on.
I’d be interested to here any of your thoughts
Cheers in advance
Rick
Hello, you can call me Queenie. I was diagnosed with PD seven years ago. I have had some challenges but have continued with normal activities, with just a few more rest periods! I am 63years old and lucky to be retired. I’m a very optimistic individual but since being diagnosed wit a rare form of guillian barre my optimism is waining.i gets kick out of the people that tell me they could get hit by a busanyday, what they don’t understand is that I have already been hit by the bus! And otjust once but twice. I was looking for a place to go where I didn’t have to explain everything. So,as I went looking, I found you!
Hi Queenie ,Welcome to the forum , where have you been all this time .(I don’t need an answer!)
I confess I will need to look up guillian barre (sorry to show my ignorance ) 
Fancy, waiting all this time for a bus, then two come along together 
Now Queenie not all my posts are like this, please dont think im am treating your condition lightly, you obviously have a lot to contend with my only wish is to restore that positivity and make you smile . LOL.
Thats enough from me , im off before the “fun police come”.
Hope we can talk soon (without the nonsense)
Best wishes,
Mal.
Hi there
I have had PD for 5 years and a few years previously I had Guillain Barre.which was the most frightening thing ever.
Speak soon
Babs x
I have been diagnosed with pure sensory GBS which is even more rare. It is kicking my butt some days, and between that, PD and meds, it has got me on the ropes! I’m a fighter and I know I will fight back but right now I just want to whimper a little bit while I lick my wounds!
Hello, I’m Sue and my husband has recently been diagnosed and we are just getting used to everything. He refuses to speak about it and has ordered me not to tell anyone. He has only a light tremor, but his mental facilities are more affected. He is vague, bad tempered, forgetful and ignores me most of the time. He flatly refused to visit our family and grandchildren. I knew there was something wrong as he seemed to change over the last two years. I am so sad for him as he never smiles or laughs anymore and we are becoming very isolated.
This forum is so lovely…very reassuring and helpful.
Hi @Mrsc58,
A warm welcome to the forum.
I’m really sorry to hear that your husband has been having a hard time following his diagnosis. People with Parkinson’s can experience a range of mental health issues alongside their physical symptoms so your husband is not alone. However, there is a lot of help and support available to your husband.
If your husband needs help for a mental health issue, or if you have any concerns about your emotional wellbeing, you should first speak to a medical professional, such as your GP, specialist or Parkinson’s nurse. They will be able to offer you advice based on your own personal circumstances. There’s more info on this here - https://www.parkinsons.org.uk/information-and-support/parkinsons-and-mental-health
We also have a ‘newly diagnosed’ page on our website that has of information about our support service and local groups which may be helpful to you and your husband. You can find more info on this here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons
Lastly, if you would like to have a chat about this with someone about this in more detail, our helpline is available to you on 0808 800 0303, Monday-Friday: 9am-7pm or you can email [email protected].
Best wishes,
Reah - Forum Community Manager
Hi Ckendzierski
I know wat you are saying not not sure where the worse place to fall, I Have fallen down stairs i the road and gardens and even off the dinner chair during dinner.itosso hard, my fight is with sleep and drooling right now, Well I wish you all the best and try and keep safe.
Kind regards
Raz
Hi
My name is Janee, just found out on Monday that I have PD. Not a total surprise but still takes some getting used to the fact that this is what’s wrong. Not just my age as my GP has said! I’m 61 by the way. I’m married and my husband is being supportive, I don’t think he’s quite grasped the full implications of this but it takes time.
I feel quite positive as life throws stuff at us to deal with and this is now my pile of poo to get to grips with. Knowing what’s wrong feels powerful, gives to strength to find solutions and move on, I’m currently learning to use the mouse with my left hand as my right hand shakes and it’s quite difficult to hit those little boxes, seem to be going well and far less frustrating
Telling people is my first objective and that’s going ok. Dealing with work is my next issue, I have a variety of jobs, mainly work with my husband, completing all the admin associated with our business, that’s not a problem as it can fit in with the weather and how I’m feeling. My other jobs are more physical and I am struggling with these but I’m not altogether sure if it’s being made worse by the weather? So my plan is to speak to my employers reduce my hours for now and take some time out to assess.
Hi Janee, welcome to the forum. Your positive outlook will be a great asset on your ‘journey’ with pd.
You’ll go through the gamut of emotions but keep interacting with people and exercise in some form.
Look after yourself, contact a pd nurse if you can. Great source of info and support.
Hi Jcszrh
Firstly welcome tot he forum, I have found this forum very helpful, and everyone are very surportive . Well you sound like you are a strong women and that you are very positive, you need to stay like that and as this Parkinson road is very emotional at times and you will need that to help you though. Also like Divine1 has said you get in touch with your Parkinson nurse as they will help you a lot. All the best and take care of your self .
Kind regards
Raz.
Hi! My name is Brenda. I am 51 and was diagnosed 8 years ago but had symptoms for several years…and I was misdiagnosed twice before finally being told I had PD. Mine is genetic on my mother’s side of the family. Grandfather and several aunts and uncles had it while I was growing up. Also had an aunt who lived with us and my sister and I looked after her whenever mother went out. I did not understand what she was going through at the time but when I think back and remember the expressions on her face, I now know exactly what she was thinking and going through. If only I had known then how much easier her life would have been!
This is a cruel disease at worst and frustrating at best buy I am grateful that when my medication kicks in I can walk, talk, dance and sing practically like normal. My symptoms have progressed. The off periods are much worse than before but at least there are options available. I was offered DBS and am undergoing tests to see if I am suitable for this. Personally I would prefer cell cloning or gene therapy but I am told they are not available yet in the UK. Hopefully they soon will be?!
I would like to attend groups and classes but suffer from anxiety, which I am currently working on. Panic attacks and dystonia are less frequent and I get out to the corner shop and hospital now. It is the off periods, they are so frustrating!
I live alone but keep myself busy sketching, writing songs and poetry, reading, watching TV. I like housework and cooking but do not do much of the latter - not as much fun for one and cannot stay up long enough to keep an eye on the oven or hob! Spend lots of time at the moment cooling off in the shower or in front of the fan!!
It’s nice to have somewhere where I can go say what is on my mind and also speak to others with, or that have experience of PD. I look forward to your replies and posting some more…
Off back to bed before data runs out!
Have a sunny day and until then, sweet dreams!
Brenda
Good evening to all forum members
I was diagnosed four years ago and will be 69 in October. I have been taking Sinemet and Rasagiline, have tried entacapone and stalevo but could not cope with the side effects and was due to add amantadine. Dyskinesia started to become a problem as did arm, neck and back pain. I decided to come off all meds and try Mucuna Pruriens, ordered the powder today,
I would be grateful if any member/s could advise if the are or have taken MP, have you had good results and what dosage you recommend. I intend to start low doses slowly. I wish you all well.
Minky
Hello. Kelvin James here. I am a caregiver who works at a charity center where we take care of people living with Parkinson’s and dementia. It will be great to share and learn from this forum