Hubby has been diagnosed


#1

Hello, this is my first ever forum post anywhere on the internet......

My husband was diagnosed recently with Parkinsons at the age of 50, his osteopath just referred him to his GP thinking he had might need some minor surgery on his shoulder!  Well you can imagine the shock we had  :(  By next week he will be on 2 lots of tablets.  He keeps fit by doing karate and walking the dog.

We have not told our 7yr old son and trying to keep life as normal as possible.  I am the one who is struggling with the diagnosis and been put on betablockers but know everyone has to be strong. 

Can anyone tell me if they have been to local support groups and are they worthwhile [hubby won't go but I would].

I sound really miserable writing this, but am hoping our life will settle back to some normality once medication is working, any advice is very welcome.


#2

Hi I was diagnosed in sept  aged 56 . Now on 2meds , requip xl and sinemet . Takes a while to get to effective dose but now getting back to normal ( if I was ever normal! )  I'm back at work and going to gym . It was def shock and future is worrying but it takes time to get use to it . Support group is v helpful  although most are older than me they were v welcoming and it's good to talk to others in similar position 


#3

Hi saintsmum

i am so sorry you and your family have to face this diagnosis.

My husband was diagnosed 14 years ago at 57.

Despite huge problems caused by RequipXL he is now on a Sinemet and Azilect regime and his mobility is fine.

He walks with a stick and not long distances , he suffers from depression from time ti time and is a bit forgetful.

But life continues in a near-normal way.

We enjoy holidays, time with family, meals with friends, cinema and theatre trips.

When he was diagnosed we both felt shocked and could not cope with the idea of our ruined future.

But here we are 14 years later still pottering on in a vaguely uptimistic way.

When life has been terrible, particularly in the DA years, I have found great comfort and advice on this forum.

Hopefully you won't face crises but we are always hear to listen and offer a shoulder to cry on and just share our experiences of this soon- to- be-beaten condition!

Love

GG


#4

Hi saints mum i am so sorry that you have to face this diagnosis. I have been accessing this site since I begun to suspect that my husband had early onset parkinsons. He is 43 years old and for the last 18 months has also been under the care of an orthopaedic consultant due to a shoulder problem. I have been increasingly concerned about his resting and postural hand tremor and have been told that I was an internet freak by the ortho consultant however as this has become increasingly worse we have been to see a neuro who has referred my husband for a Datscan. We are awaiting a date for this test. We are also very concerned iemotionally, health wise and financially as my husband is a hgv driver and the loss of his licence would potentially mean no job with a lot of working years left. I have found that using the parkinsons website has given me support during this difficult period and I have realised that there are a number of other nuero conditions that could be completely devasting. I hope that some normality returns to your family life soon.

Klou


#5

welcome saintsmum1,i take it your southampton fans ,well i was 34yrs old my life was not affected much for the first five yrs then pd got a bit aggrresive but i know many people have led a normal life for many years,i also went to a support group but no one my age not into rich tea biscuits & cup tea ,but you might be lucky  there are some young support groups,but give your hubby time & let him decide,and make the most of your life ,try to stop worrying your make your self ill ,got to be strong i know its hard my wife was the same but we just go with the flow ,keep your hubby active as this is good for pd also takes your mind of it.welcome again


#6

Many thanks for your replies.  We are just waiting for the pd nurse to send through the letter for our GP to be put on Sinemet and hopefully the tremours will then reduce.  From some of the feeds I have read it does make me fell more positive with all the support that everyone gives and will try to find a younger pd support group and go along, probably on my own and hubby is quite an introvert :( 

Klou, I hope you get the date through for the DAT scan soon, my hubby had that for a formal diagnosis.  Hubby did see the pd nurse last week and she did say she has patients who are HGV drivers with pd - there is hope.

Gus, It's the other shape ball I support [the Premiership Leaders lol]. 

Thanks to you all again for your words of kindness and positivity.

xx

 


#7

My husband just turned 51 and I have suspected he has had Parkinson's for about 6 months now, I noticed how slow all his actions were first maybe a couple of years ago and just put it down to tiredness, he does a lot of nightshirt overtime. But now I notice how stiff he is getting off the chair and also his gait has definitely changed over the last year and a half. He has always had a tremor, I think it runs in the family, so can't really say if it's down to PD. When I fret about it he says he's fine and thinks the stiffness is coming off his back. 

He has been to the doctor and she referred him to physio saying it sounds like a pinched nerve and he's has just recently went to a sports physio who said it's coming from his pelvis. I know he hasn't told him all his symptoms and has only concentrated on the stiffness and his walking, can physios tell the difference between PD and other causes of stiffness? I hear of misdiagnosing of PD on the Internet all the time but my husband just shrugs it off, saying the doctor knows best, should I keep pushing him to go back for a second opinion? 


#8

Hi Tarbuckle, it is really hard I know.  When my husband's osteopath referred him to his GP and he went for the appt, the GP was honest and said that he thought prior to him attending the appt he thought he would be a 50 yr old man who is just getting stiff/arthritis but could see that he had a tremour.  We were lucky enough to go private and because of that process is why he was diagnosed qucikly firstly having an MRI with a neuro surgon, which was clear, and then referred onto a Neurologist who made the diagnosis.  Remember you can always have a second opinion on the NHS.  Good luck and keep up informed.


#9

Hello Saintsmum,

There are two things that have helped to sustain me since being dxd in 2007 and they are having a specialist nurse to communicate with and joining a branch within weeks of being told. I was 58 at the time and felt I did not want to go on this journey alone. I also thought that I would like to try and help others for as long as I could because at some point in the future it would help me to accept assistance from others, which is something I am not that good at!. There are usually two groups for want of a better word, one are those that have retired or are available to attend daytime meetings. These meetings consist of a whole variety of activities, for instance our branch offers talks, exercise, quizzes, singing, planned outings, fund raising and hopefuly this year walks. The second group are usually people with Parkinson's (PWP's) who have been diagnosed whilst employed  or at a younger age than usual. Sometimes referred to as early onset or working age groups. This group in my experience prefer to be independant of the main group and like to run things on an informal basis. There are those of course who do run as an official group but the two groups I have run  preferred to remain autonomous. I have asked why they will not attend the other meetings and almost all have replied that they do not want to see PWP's who have had Parkinson's for a long time. Each to his own and so it should be. It would be grand to have the energy of those young prople to encourage and help especially with branch fund raising but I do understand and sympathise with their point of view.     

I can only speak well of the branches I have been a member of and I am sure they will welcome you with friendship and help you with the answers to the many questions you will have.My advice would be to at least try it by attending a few meetings because at least then you will be making an informed choice.