Young person support group in North london


#1

I was looking for a group in North London and was surprised that there isn't one

Im not sure what age the other young groups out there are aimed at. ID guess pre retirement age

Im in my mid 40 s diagnosed last summer

id be interested to hear from others of a similar age.

J


#2

Hi jack I was diagnosed four weeks ago . From what I gather there is not one for my area either -  south east  . I've found it helpful talking to people on here . I am 45 . I have had problems for a few years mainly shoulder and then had trouble with my leg quite a few months ago now . Handwriting was an issue and things that required fine motor control . I am taking azilect and vit d at the moment as bit low . I work full time and have two children one of 19 and one of 12 so the 12 year old is still quite dependant . How about you ? 


#3

Hi Maddison

its nice to hear from you though I'm sorry that you have been diagnosed. Did you have the brain scan? That was awful for me!

I've also got 2 kids aged 3 and 5 and work full time

my main issue us with my left hand...the shakes cramp and loss of motor skills. I'm right handed thankfully!

Sleep isn't great but that may be due to something else.

I'm also on azilect plus simenet and amitriptallyn ....(I'm sure I've spelt that wrong!)

i got quite depressed initially.... I went through the classic shock denial depression route. Now I just try to grt on with it but it's nice to have people to chat to who are in a similar position. Family try and understand but they can't know what we go through. 

 

J


#4

Hi jack how are you ? Are you feeling any better ? I saw one of your other posts .i must say the thought of the DA's scares me cos of the possible side effects and I am quite OCD already although consultant says that's often associated with pd anyway ?? Have only been on azilect four weeks . Pd nurse says they take six weeks to work . Some days I feel better than others . Today my leg has been a pain . I have been limping at work and  my right leg and arm / hand has felt really cold at times although it has been wet and cold today . I'm trying to keep positive it's difficult sometimes . I am worried about work as I work for myself and I'm right handed . Consultant did suggest going back to working for an employer and less hours -not that simple . Gonna wait bit longer on azilect but know I may have to take something else too .  Although not my local hospital I have been referred to kings too as they see a lot of younger people . There is not a young persons group in my area but I am quite happy to travel to another one . Kings will have one I'm sure . I know what you mean about the stages you go through . It's like a bad dream isn't it ? Consultant was talking about genetic testing .  There's no one in my family ever been diagnosed with it but it doesn't mean they didn't have it I suppose . My nan was very shaky . I had a head injury when I was nine . They have seen a link between this loss of consciousness and pd up to 40 years after event . I was hit by a van . Could've been anything though couldn't it ? That's what I don't like about this illness ( don't like the word disease ) nothing is clear cut is it ? It's all a case of time will tell and uncertainty about this and that . Sorry if I've droned on x


#5

Hi Maddison

 

drone away -!! its nice to have people to talk to who know what im going through

Im doing better this week thanks. I didnt find that azilect made any difference. I would strongly advise against DA's. Ive felt awful since i went on them stopped kick boxing and going to the gym, put on 2 stone and been a misery which isnt me. 

im hopeful that the change to sinemet will be for the best.

Im thinking about going to kickboxing again next week. Physically it will be as bad as the 1st time I went (could barely manage stairs for a week  - not coz I got kicked, we only do 5 mins light sparring all padded up) its 2 hrs of intense cardio though. 

ive been genetically tested but dont have the results yet. My g g grandma had PD apparently

i know what you mean about nothing being clear cut. its like your get shown a shopping list of symptoms and you know youll get some not others but its all up in the air.

i know im a little bit further down the line in terms of getting used to the idea that im stuck with it. Ive concluded that the best way of dealng with it is part denial part acceptance by which i mean there is no escaping the daily reality but there is no point fretting about 10 years time or however long as it drives you mad.

im self employed too but i have partners staff offices etc and im tied in financially until i retire

Anway, Id better go as its late

Keep in touch

 

J


#6

Hi John glad you're feeling better . Hope the drive to and from work has been easier . With my job sometimes I am seeing people at home and driving all day which can be hard . Other days I am clinic based which is a lot easier and only twenty mins drive away . The kickboxing sounds great . I read its a good form of exercise for this . Need to start doing something myself  and thinking of different things . Maybe some aerobic exercise swimming . I have a dog so take him out every day . I know they say tai chi Pilates is good but I've never fancied that . Did try tai chi once but didn't enjoy it . Have been referred for physio so see what they say . Also thinking of buying a treadmill thought that would be good in the winter at home . I see what you are saying about part denial and part acceptance . I think that's why I feel better at work because I actually can forget this is happening to me sometimes . Apart from today when I saw a 85 year old lady who has pd and who has the same pd nurse as me and I started feeling sorry for myself again thinking I could cope better if I was old . 


#7

Sorry jack that message was for you . Just left a message for John and got confused . Not difficult at moment . Ha ha x


#8

Middle aged people in North West London

I am 52 and live in North West London and was diagnosed October 2012.  I too am interested in groups for middle aged people.  I have gone to a meeting of the group local to where I live which whilst informative the attendees were primarily pensioners.

I too am interested to hear from others of a similar age

Valerie

 


#9

Hi Valerie there is not a younger persons group where I live . I am going to look into where the nearest one is as I think I would benefit from meeting people in a similar position to me . There is a group but I was talking to someone who went along last week and he said everyone there was elderly and they were doing old time dancing . Plus the fact I feel I don't want to tell everyone yet . I work in clinical practice and some of my patients go there . I have been referred to a different hospital - kings which I think will be better for me at the moment . I am recently diagnosed and trying to carry on as best as I can trying to be positive and go into work every day . Some days better than others but to be honest not feeling too great this week and tearful . Took my dog out earlier and I was so slow . What medication are you on ? I'm just taking azilect at the moment . This is sixth week don't know if this is the maximum response from this now ?? 


#10

Hi Valerie there is not a younger persons group where I live . I am going to look into where the nearest one is as I think I would benefit from meeting people in a similar position to me . There is a group but I was talking to someone who went along last week and he said everyone there was elderly and they were doing old time dancing . Plus the fact I feel I don't want to tell everyone yet . I work in clinical practice and some of my patients go there . I have been referred to a different hospital - kings which I think will be better for me at the moment . I am recently diagnosed and trying to carry on as best as I can trying to be positive and go into work every day . Some days better than others but to be honest not feeling too great this week and tearful . Took my dog out earlier and I was so slow . What medication are you on ? I'm just taking azilect at the moment . This is sixth week don't know if this is the maximum response from this now ?? 


#11

Hi Valerie

I am a young at heart 61. I also live in West London . I was diagnosed in August and still not able to accept this disease. A local support group in this area would be helpful.