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Hi All,

My hubby 64, has just been diagnosed on 14th of December, we are in the dark as we were just told, given meds then sent home to return in Feb. Is this normal ? As I read info on the net it seems there is a network of extra's for PD. Does the other care and support only kick in when the PD is further down the line? Should someone be advising us or are we too early into it? He is semi retired anyway and as it is winter does not work much till March, but will he be able to go back ? This PD is a mine field for us newbies to it all. Anyone got any advise

19 Replies

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  • Hi,to begin with Happy New Year.At the moment you may not think so but there is help out there.As you are from the UK,go to the parkinsons website and look for a group near you.They offer fantastic support and are good for chatting to carers and parkies.

    On the website you will also find a number that you can call and speak to a PDNS(Parkinsons specialist nurse.

    Make an appointment and go back and see the doctor ask to be referred to a neurologist,they will be able to answer any questions.

    There is also the Parkinsons magazine you can subscribe to,it is on the parkinsons site.The address for the site is ---

    parkinsons.org.uk --- they also have information you can download or order to be sent out.Also you can ask any question on this page and you will get an answer.

    My husband was diagnosed in 1998 at the age of 35 .He was given meds that did not work for him so he saw a neurologist and he prescribed different ones that worked and then just adjusted the strength until he was on an even keel.It can sometimes take a while to get the meds right but persevere .

    Don't be afraid to ask questions as sometimes this is the only way you will find anything out.Hope some of the info above will help.

  • Thank you for a prompt reply, Happy New Year too! I am serching any website that mentions Parkinsons, there is a lot to take in. We have been to a neurologist who diagnosed my hubby within 5 mins as he walked down the corridor to greet him. He was given a script for meds told he would see a PD nurse and give this slip to the receptionist to go back in Feb. I was just wondering how long it would be before the PD nurse got in touch, what was the time frame for others? Is it just as christmas approached that we have heard nothing? We are guessing but we think my hubby may have been showing signs for about 3 years but would do nothing about it. Nice to hear from you.

  • Hi,you will either receive an appointment for your pdns or you will get a call from them ,they are fantastic,they become like a friend who if you have a worry or a problem you can pick up the phone and call them.I would think because it is the christmas and new year that this is the reason for the delay.

    PDNS's are there to help not just your husband but you also,they should go through everything with you,have a list of your questions you want to ask and they will answer them for you.My husband has had a PDNS for 11 yrs now and she is fantastic.

    There is alsorts of help available from physio to speech therapy if needed.

    I met my husband in 2001 so did not know him when he was first diagnosed,we married in 2002.He was not taking his meds properly so I went with him to see his neurologist and I just asked allsorts of questions as I didn't know a lot about Pd,he answered everything and we were a lot more knowledgable when we left.

    I am someone who is a doer and so I asked about trials that were taking place,who could go on them and what was available to help my husband.I found that if I didn't ask I wasn't told.

    My husband says I am just nosey ,I say I am inquisitive.

    If your husband still wants to work there is no reason he cannot continue.If he works for an employer then i would say tell them about his Pd.Keeping up a fitness regime,bt that I mean going for a walk,doing some gardening,helping around the house,helps keep the symptoms at bay.

    Hope this helps.

  • Ooooh! thank you so much for info, my hubby is a gardener for his work so we are hoping he can continue, so that will kill 2 birds with one stone then, exercise and work in one. Glad I stumbled across this site I think it will be useful. Thank you so much.

  • Dear Percy-Parkie,

    Hope this will be of some use to you. My Husband was diagnosed 5 years ago and did the usual computer search before I got home for work. He found and focussed on all the most dreaded symptoms. He had clinical depression, a non motor symptom of Parkinson's, and It took a lot of reassurance to get him back on track.

    The internet is a wonderful tool but there is an overwhelming amount of information and many different opinions about drugs, the role of God, the causes of Parkinson's and the likelhood of developing different symptoms etc. It can be very confusing and depressing if you focus on the worst case senarios especially in the early days when everything is so new.

    parkinsons.org.uk/local_to_... is the link for the support groups and local branches near you. Most areas have an Information and Support Worker (ISW), employed by Parkinson's UK to do exactly what their title says. They can meet you locally or come to your house.

    Don't underestimate the support that you can get from other carers. Quite often, in our group here in Cornwall, it is he carers who want more information while the person with Parkinson's is either in denial or underestmating their symptoms, telling the consultant that they are 'fine',

    Your husband is still young and active. I would advise you to use the ISW and web site to try to find people who are nearyour age and stage with Parkinson's. With any luck there will be a younger group meeting near you. It can be quite daunting, walking into a room full of people who have had Parkinson's for ages and have other illnesses which might give an outward appearance of infirmity.

    Don't lose your sense of humour!

    Best wishes

    Sue

  • Thank you for your advise I am trying to take all in. Yes I know that all cases are different and that is what we are clinging to. Hubby has never had an illness and is not on any other form of meds for anything, he keeps active through his part time work but as you say he too sat with the consultant and said he had no problems and had not noticed anything happening so it was a good job I was there to promt if and when required but the consultant was no fool anyway and within mins had hubby sorted. I am going to register with the society and get 1st hand info as suggested. Thanks again.

  • Happy New Year first of all, sorry it had to happen on this site. What your first visit to the DR. is what most o through, what best helped me is being on this site and speaking with some very great people. Next join any parkinson's suport group near your home. Lastly learn as much as you can about PD you will be your best caregivers.

    Regards

    ERIC

  • Welcome and Happy New Year. You have a long road ahead of you both. We are here to listen and help as we can. Remember- you are NOT alone.

  • Happy new yr. Im in my 1st yr of being dx and this site has been brilliant. Parkinsons uk are great help. My only advise is keep on going to your gp and chase up hosital appointments ive not had best of care. It took nearly yr for my mri as they admitted they forgot about me. Buti stil work and drive life is pretty much the same just a bit shaky. .i wish you both all the best and as i was told by the great people on this site you have parkinsons it does not have you..

  • Happy New Year

    We are all here for you, and will help if we can.

    I reckon just carry on with life as normal as is possible. See how the medication helps, get it reviewed if it does not.

    Don't over tire yourself, keep a good diet, exercise if you can.

    I wish you all the best.

  • I'd say get in touch with your local Parkinson's uk information and support worker ASAP. They'll come round and help out you in touch with all sorts of help, get you DLA, blue badge etc. A real support

    Ron

  • I think most people go through a period of panic when they are first diagnosed. This is especially true if you are just told the news and 'goodbye'. Things may not be as bad as they first appear. A number of people on this, and other, Sites were diagnosed over 10 years ago and are coping well. You need to read all the information available and then just wait and see. There are a lot of different medications available which help us to live life as normally as possible. If you can't do something, you just find another way to do it, and so on. The Parkinsons Nurses are brilliant so get as much help as you want or need. Good luck and tell your husband to exercise as much as he can and FIGHT..Life is not over. it is just a different life.

  • make sure your doctor communicates better or find one that does

  • Thank you to all for your support and info I am sure we will get to the bottom of this thing and get sorted TOGETHER.

  • hi happy new year ot you and yoru husband

    is eh computer literate and would he join the site?

    it is so good to getg advice nad suppport on all the problems nboth 4 carere and the PWP OR PSP (which i have)

    dxd in dec 2010 and sitll here despite my dysledixc typgin ( 1 hand stronger than the other )

    lol jIll

    ;-)

  • Hubby not into computers at all but I will be his go between to all.

  • Don't get overwhelmed by the amount of info on the internet. Most of us did when we first heard the diagnosis. I found that I had to go through the stages of grieving, change drs a few time, try different meds, until I found what works for me. I try to keep current about new developments about Parkinson's and stay positive as much as I can. I try to think that I am not suffering from Parkinsons, I'm living with it. I can't do everything and can't teach anymore, but there is lots I can do, just differently. Exercise, exercise, and use some weights to strengthen upper body, in case you fall and have to pull yourself up. Have a great weekend everyone.

  • Hello and "Welcome!"

    This site is one that will help you in whatever you may need....just ask a question or state a concern, and you will most likely hear from a number of "Parky Friends" that know of what they speak.

    Blessings,

    CJ

  • Hi I'm new to this and just joined up. Anyone who would like to show me around

    would be greatly appreciated, I was told my password or name or what ever

    I call myself is sugar50 I don't remember signing up before under this name!!!!

    Your help would be greatly appreciated. Thanks

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