I am new here

I am new here

Hi i am 57years old. I live in the UK and I eork as a sales assistant in a dept store. I have been diagnosed with pd 3yrs ago.My hobbies are reading and sewing . I am an outgoing person and love travelling ,meeting people and very chatty and friendly and I am also very spiritual.I found this website accidentally utility I am so happy that I did because it is nice to know that I am not the only one with this horrible nd debilitating condition.I hate it as it has made me feel like a circus clown especially when I M out because for my slowness and mobility I feel like every body looks at me probably thinks I was drunk.Pd has definitely knocked my morale and taking my confidence away. I don't even feel like visiting family gatherings where I have to hide my hand due to the tremor.So I was very happy to find this website and now I know I am not alone.I do get a lot of support romantic my pd nurse and my pd support advisor.The sad part of this debilitating condition is its taking over my life I may have to give up my job that I love so much.

21 Replies

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  • I, meant from my pd nurse not (romantic )

    Niludi

  • Dear Niludi - I am the same age and diagnosed in July this year but have had the physical symptoms since January of 2015 that started with just an ache in my left forearm. I can relate to your experiences and feel the same myself sometimes. It took me so by surprise, like it does for many. Don't be hard on yourself, I can tell you have a heart of gold from your message because of your honesty. I know PD can take away the things you enjoy, I guess we have to try to find things to replace them. PD is a humbling experience as you come face to face with your own weakness and vulnerability. But we are not old and have many years left. Robert Kuhn of positively parkinson's says the big challenge for pwp is to decide how they will use each day to the max. I don't have the answers but together we can share ideas how to make the most of life. Some people paint, some write a book, some start a business, some climb mountains, some people support others with deeds or words. However I am conscious that PD can be a self isolating condition through loss of confidence and I believe we have to say sod it I am going out, I am doing stuff. Besides people who might react strangely to us there are many people like me and you too. Boredom is the danger with PD but talking with others helps. Try the chat room I mentioned in another post, I am there alone often lol but one day I hope there will be a critical mass of people to chat with, especially for those moments we are down or feeling alone. Call me out if I am not there!

  • Thank you so much for your encouragement . I love to sew a nd I will start again.I have always been an active person but the slowness is really getting me down.anyway thnks u once again

    Niludi

  • We can still have goals. What about being marvellous at sewing?

  • Do not be discouraged, we must always fight. Early symptoms of PD I got them in 2010, with a large depression.

    At the end of 2015, lae my conditions were not good.

    After a visit with a neurologist "different" in the first days of February 2016, I started a new treatment, that of vitamin B1, which involves making 3 intramuscular injections of Vitamin B1 100mg a week. After 3 months I started feeling a lot better. My face, my balance, my walk, everything had changed for the better. Today, after nine months still me 3 injections a week, and I'm fine. The care with Vit. B1 Replaces not the one you are doing, but it adds to what you do. If you want more information you can write to me on mail: enricomoraca@tiscali.it -

  • Please tell me how can I talk to my doctor what kind of test i have to have

    are you in us

  • Dear John,

    I send you the links concerning 3 patients with parkinson's disease.

    For each patient there are two links, before treatment and after treatment

    with three weekly injections of Vitamin B1 100mg.

    -------------------------------------------------- ----------------

    Andrea patient before treatment Vitamin B1:

    Andrea patient after care Vitamin B1

    -------------------------------------------------- ---------------------

    Bruno before the patient care Vitamin B1

    Bruno patient after care Vitamin B1

    -------------------------------------------------- -------------------------

    Joshua before the patient care Vitamin B1

    Joshua patient after care Vitamin B1

    -------------------------------------------------- --------------------------

    It is not necessary to know the Italian language, just carefully watching

    movies to see the improvements obtained with this treatment.

    I'm at your disposal for any clarification.

    Enrico

  • Enricao, are you connected with this therapy?

  • That is amazing,from reading everyone's articles I think in the US pd is more recognised then in the UK . and I noticed there are lots of treatments and meds available. I am defin7tely going to mention vitB1 to my doc.thank you for sharing

    Nilu

  • Hi

    I am in the UK. but as doctors go you really need to persist until they listen to you,don't know in US but docs are quite sympathetic here in the UK . I m quite lucky I really have a nice doc very kind ,understanding and very sympathetic. I don't know about your condition you have not mentioned the symptoms etc.but if you feel it resembles pd then you must get on your docs back, and insist on tests etc.

    Niludi

  • Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot Study.

    ncbi.nlm.nih.gov/pubmed/265...

  • Thank you for your encouragement . it's just that the in the UK parkinsonism hasn't got much awareness the Parkinson’s support group is doing quite a lot so I M going to help by joining the group.they have helped me a lot. I think I should ask the doc for vitamin B1 I just want my legs back.at the moment I have a lot of back pain and it's excruciating pain.I have started cannibis oil hat helps with the tremor.thnks once again

    Niludi

  • I send you the links concerning 3 patients with parkinson's disease.

    For each patient there are two links, before treatment and after treatment

    with three weekly injections of Vitamin B1 100mg.

    -------------------------------------------------- ----------------

    Andrea patient before treatment Vitamin B1:

    Andrea patient after care Vitamin B1

    -------------------------------------------------- ---------------------

    Bruno before the patient care Vitamin B1

    Bruno patient after care Vitamin B1

    -------------------------------------------------- -------------------------

    Joshua before the patient care Vitamin B1

    Joshua patient after care Vitamin B1

    -------------------------------------------------- --------------------------

    It is not necessary to know the Italian language, just carefully watching

    movies to see the improvements obtained with this treatment.

    I'm at your disposal for any clarification.

    Enrico

  • Good morning Niludi

    Please do not let pd take over your life. You are young and full of life. You can control pd and enjoy a very long and active life.

    It is not easy to fight pd but you can do it. With proper meds and a good solid exercise program no one will be able to tell you have pd.

    You can easily make it to retirement. As for me i am 62 10 years dx with pd and living a very full life. Look over some of my post to find what i do to keep going.

    If you ever come to Texas let me know i could show you around Dallas.

    Good luck

    Bailey

  • Thank you Bailey I will take you up on that offer.But I have noticed there are lots more treatment and meds available then in the UK . I will take up exercise as I have justuck moved it is a bit difficult. Yes I would like to meet you and you too can come visit if you are ever coming to the UK.

    Thanks for your encouragement

    Niludi

  • Hi Niludi,

    Yes wise words from O z i e there. I've done more and achieved more meaningful things since deciding to life life to the full. Slow is not a bad thing in this super fast world. Keep on keeping on and be open to surprising yourself ... Because you will!

  • Hi macdòodle

    Yes ozzie is very encouraging I should follow in your footsteps.the good thing is I am still driving so I can be out and about.in M so happy that I have joined this website and making friends.

    Thank you niludi

  • If you are 57 .. I'm Father Christmas.

    How do you do it.?

    I'm 65 with PD and Live a full life. I am Church Warden. I play keyboard in care homes. Enjoy holidays . This year I've had a prostate op gall bladder op . I've got Sleep apnoea with a mask to wear every night ,helping me breathe .

    Oh THEYVE just told me I'm probably diabetic.

    Happy Days.

    Apart from all the meds an hospital visits I find the best therapy is Visits to Weatherspoons for a drink with my mates ,at least three times a week.

    Cheers. MH

  • HI MH,you sound like a very happy outgoing and positive person like I used to be,in have gone through a lot since five years following the breakup of very unhappy 20 years of marriage. breast cancer divorce etc just took a toll on my life but I carried on always smiling and in fact the last 3yrs of being diagnosed with pd I continued working as well but the last 3 month pd has taken over I just can't cope with the mobility.But thank you for your encouragement I feel much better maybe once I accept the fact I may have to leave my job I will do things I always wanted to do and start enjoying myself.And nothing like weathers pools coffee.by the way are u in the uk

    Thanks a lot

    Niludi

  • Welcome Niludi......:)

  • Yes I'm in Yorkshire. Eeby gum.MH 1

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