Hi everyone


#1

Hi all,

Just thought I'd say hello to the forum! I've recently been diagnosed with young onset PD after almost 2 years of problems with movement and tremor in my right arm and hand. I'm a 33 year old Londoner, doing my best to stay positive!

Best wishes,

T


#2

Hi T and welcome to the forum.

You have come to the right place. There are lots of people in the forum who have experience of everything that Parkinson's brings. There are quite a few who were diagnosed young. (I was 39 at dx, that was 10 years ago).

Its important to stay positive and to try and keep control.

Some people find that getting involved in research or other volunteering activity (fund raising, etc) helps them to engage with the condition and by stay active and positive.

Keep posting!

Elegant Fowl


#3

Thanks for your reply Elegant Fowl,

It's reassuring to feel that there are people in a similar situation that I might be able to ask questions, and hope that I can also help others in the future as I learn more about it.

I'm definitely going to try to get involved with research and fundraising.

Best wishes,

T


#4

Hi T welcome to the forum . I have recently been diagnosed too after a few years of problems . Mainly a frozen shoulder but now problems with right side foot and leg and walking a bit of a problem . Have been busy today usual Saturday jobs so thought I'd take a break and post a reply to you . I too am trying to be positive and feel better than I did a fortnight ago . I have started on azilect but apparently it takes a few weeks to see effect . Are you taking anything ? This forum has been a tower of strength to me . I don't know what I would've done without it . People in the same position who can offer advice support and their own personal experience . I hope you find it helpful too . Exercise seems to be a big help so I plan to get moving more . My friend has said about joining a class . I am on the go all the time as I work full time and have two children the youngest is 12 so that hopefully will help. Best wishes


#5

hello t ,i was dx at 34yrs now 43yr also have dbs doing really well.the key is to stay active swim,sauna & steam room helps me !


#6

Hi Maddison and gus!

Thanks very much for your replies. My probs started in my right hand, and now affect most my right arm, and does seem to vary a bit from day to day. I also definitely seem to find that exercise helps, and it seems to aid the positive thinking too.

Maddison - I've just started on Azilect as well. Only a week into it so no changes yet, but let's hope it helps!

Best wishes,

T


#7

Welcome to the forum t_g , you will find plenty of help and support here you are in the right place

i was diagnosed last August with pd  i was 47 yrs old when i was diagnosed , much like yourself had a tremor in  my hand  for about 5 yrs which has got a little worse over time then develpoed  stiffness when getting out of bed and chairs and a painful left shoulder which sent me back to my gp who referred me to a neurologist who diagnosed pd  x


#8

Maddison and t_g  --

Both of you mentioned starting on Azilect (rasagiline), and I wanted to share what I've experienced and what I was told by my doctors.  For some pwp, it counteracts symptoms.  For me, that is not the case.  I noticed no changes whatsoever from Azilect.  However, it supposedly slows the progress of PD, so if you have no side effects to consider, don't give it up.  I have been taking it about 10 or 11 years now, and although I cannot say positively that it is responsible, I can say that my case is still in the first stage of PD after 17 years!

There well may be other factors involved.  I do exercise and I am a positive-thinking optimist.  Then there is the factor of good luck, perhaps, but I do credit Azilect with some delaying power.

Best regards to you both,


#9

Hi j how are you ? Sounds like you had a great time on holiday . Thank you for your message . I have been on the azilect for a fortnight . I have noticed my foot is not as swollen and quite as numb and seem to have a bit more dexterity in fingers . I hope this is down to the azilect time will tell . My leg is painful at the top of thigh though and walking about the same . Had a bad day on Sunday and didn't feel so great but have been ok since . Phoned pd nurse and asked her to refer me for physio as not seeing neuro until oct 6 th . Have also got the DVD and exercise  booklet from puk but have not looked at it yet . Have been going Ito work and managing . Feel better when I'm at work - distraction I suppose at moment as still trying to get my head round things . Trying to carry on as normal and have been really busy as my accountant wants my books as I'm self employed . Wish I'd been a bit more organised with all that and done them ages ago ! My gp phoned today and said I was low on vit d so got to take supplement . Said it may help pain . Had a nice weekend away with some friends by the sea a couple of weeks ago and the weather was lovely . Take care j thanks for all your advice and support . Have not had any side effects from azilect so intend to stay on it . Apart from a dry mouth but I can cope with that ! 


#10

Hi Shelly and J - thank you for your replies!

Thanks for the reassuring comments about Azilect J - I was told too that it was more about the long term affect. Lets hope!

Maddison - I've not noticed any side effects yet either. I wondering if my arm might be swinging slightly more, but a bit early to expect any changes I guess. I'm also self-employed, so probably share some concerns with you about that!

Best wishes,

T

 

 


#11

Hello t-g and all

I think I am about 50 but in fact I'm 68 

Was on sinemet plus for early staage PD - dx 2 years ago and now off Sinemet and on Co-Clareldopa - v. similar.  Left hand does not tremor but judder.

Wanting to send best wishes to all - keep on supporting each other

x

 


#12

Hi aberwells good to hear from you . Hope you are ok and have had a good weekend . We went to a friends today for lunch so that was nice . Took my dog out for long walk before we went to a lovely country park we go to . My right leg hurts at the top have first neuro physio appt on fri so hopefully they will be able to give me some exercises and advice . Have been looking at buying a treadmill . Thought it would be good in winter . I also went swimming for the first time in ages . Felt less stiff afterwards but only thing was it was so cold in the pool . Gonna try a different pool next time I think or look into membership at a better one . Symptoms seem to be helped with azilect at moment . I had many symptoms and things are better . Couldn't even butter a bit of bread without it being a problem . How are you getting on ? Why were your meds changed ? Has it helped ? It helps to talk to other people in the same position . Was looking at support groups - a working group but my nearest one is quite a distance . Sometimes I feel ok then I read something negative and get anxious . X


#13

Hello Maddison

I see you are up early - and it is good to have a clear blue ky here in London.

Just taken my ferrou glutonate (iron) try to take an hour pre PD med and that will at 7.30am

Right now I need to take treasure of a little dog to the grass.

Speak in about 40 minutes.

warm regards

AberW


#14

One happy dod now back in her bed!

Meds taken - I need to double check that it is okay to have a banana close to the PD med, someone was writing about this recently.

So much that I learn here - ie a useful reminder to take meds with at least a whole glass of water.

I changed from sinemet plus because the oval tabs kept breaking as I took them from their packaging.  My GP and Parmacist say these Co-Careldopa have exactly the same ingredients.  Gus believes they release diff at diff times.  Will need to check.

I think they are having the same affect.  But do intend to return to making brief daily noes on the state of my boy, mind and spirit!  I think it was last Thursday evening my ankles really hur because they were so ight and I kept doing stretches.  Then there was a day when I fell asleep late morning and took the pd med 2 hourrs late!  Since then the ankles have been a lot better.  Who knows what really causes what ...

.I have a friend staying and asked her to take a video on my phone of me walking.  I wanted to see my posture.  I watched it and wept!  I just do not walk tall, but seem to remember I was a bit round shoulder in my youth.  Finding the energy and motivation to do all the eercises I need is hard work.  I have just done ten stretches - standing on my toes and then on my heels.  The foot clinic told me that the 2 toes which have gone rigidly bent are in this state because of the PD!!  Muscles and ligs in my left calf not working so well affecting my toes!!  Oh yes and on the video my left arm just was no swinging - I thought it had been getting better.

Dog walking is wonderful exercise.  I never let her off the lead - not confident - but this friend does and I do believe she is the fastest dog in the park and has taken to leaping through the flower beds!!!  We found a wild flower meadow and she had a wonderful romp.  

Now, I think it is time for me to have another sleep - this is somehing I do - another hour then on with the day!!

Wishing you and yours a lovely day and thanks for your response - it is good to get some feedback,

AberWells

 

 


#15

Good morning aberwells . Yes it is a lovely day . Just getting ready for work leave in half hour but only working until 2 pm today so not bad . Have a nice day enjoy your time with your friend x


#16

Hi i'm new to forums and fairly new to my diagnosis, october 2013. It was a very scary shock, although i had been visiting gps for nearly 3 yrs with various difficulties,ie painful legs and shoulder, foot dragging, handwriting, teethcleaning etc, etc. I lost my sense of smell though 9yrs before that when i was pregnant. I have 2 young children which increases problems in one way although keeps me busy and determined to stay well for them. So yep I am a YOP diagnosed at 51 and doing my best to stay positive. Sometimes i struggle due to lack of dopamine, fatique and frustration.

would be pleased to hear from others with struggles of balancing life with young children (my youngest is 5) dealing with pain, medication, other healthy peoples opinions, emotions etc. It feels sometimes that you have just sorted out pd and am being really positive when bang pd throws another symptom into the equation. Then people say stay positive, do your exercises, you will be ok. There much worse out there. Your lucky.

Sorry for that. I really am a very positive person. I meditate, am a trained reiki practitioner, i love life and am grateful for my world. I still need to other pd likeminded people who sometimes struggle with their reality though.

Hope to hear from you.

Sunnybear, from Cornwall

 


#17

hi sunnybear and welcome your pd nurse or gp can help with the pain,and yes excercise is a main factor with pd and also have a strong mind,also pd is yes it does throw new things at you just when you thougt got meds right for pd then you have pain problems ,but would advise you never feel that your wasteing gp or pd nurse time & jump on the symtons fast good luck !


#18

Welcome to the forum, Sunnybear! 

Cornwall is one of the parts of England I've not seen and want to visit.  I live in Oregon, which has a climate quite similar to southern England and northern France.

Although it's very annoying to hear when PD is giving you trouble, all we can do to fight it is exercise, stay as positive as we can, and work with our doctors and nurses to find the rihgt combination of medications.  Over the years, the meds will probably change as your case progresses.  But if you are lucky, it will progress slowly.  I have had PD at least 17 years now and am still in the first stage!  My doctor told me at my last visit that no one could diagnose Parkinson's from my discernible symptoms.  I wish you the same sort of luck!

Whenever you feel discouraged, rely on the forum for a sympathetic ear from those who understand. 

Best wishes,    J


#19

Hi j and Gus

Good to hear from you. I am really a strong positive person. I was just having a moment. This first year has just been a major learning curve to me. I felt poorly and weak for along time before diagnosis and although a shock and a smashing of plans at least i know whats up. I began to feel a little mad because the symptoms sounded small and progressed slowly but adding them they were buillding. Getting the right meds seems hard. Requip was brilliant in one way but not so good in another however neupro are the opposite good in areas requip is weak but weak in areas requip is strong in. Its a shame i cant take a little of both.

The pd nurse has suggested i go back to see my neuro but he may start me on l dopa. Not sure im ready yet. Has anyone used mucuna powder. Thanks again guys for welcoming me.


#20

I am new to this so here we go had pd four about 4 years now took a good year to get my head around it but with help from the bristol branch were i live . I can talk about it as i now know there is lots of help out there but still fine days when i just had enough just want to say leave me along i just have no get up and go on a good day i am good but on a bad one not so