Hello I'm new..!


#1

Hi there!

I'm 48 and was diagnosed last year. My Mum had Parkinson's and while I am very familiar with the disease through caring for her, it has to be said, its very different when it happens to you.

It can feel very isolating sometimes and I'd love to chat to others as I navigate this rather complex journey.

Best wishes

Sue

 


#2

Hi Sue, 

Welcome to our online community! I'm Kat, I work for Parkinson's UK and I help moderate the forum. It's great to have you here, I hope you enjoy getting to know the other members.

If you need any advice on how to use the forum then feel free to ask me. 


#3

Hi Sue and Welcome to the forum,

You have come to the right place to learn more about life with Parkinson's. I'm sorry to hear that your mum was affected. 

You will have spotted that it is Parkinson's Awareness Week and the news and social media are full of personal stories of people living with the condition. The forum is also full of similar people. I hope you get as much support from the forum as I have.

Elegant Fowl

 

 

 


#4

Hi Sue, Sorry to hear about your dx but we will do what we can to help you. There are a lot of different characters on this forum, I am very straight talking I know of no other way.

I was dx at 47 and been in study mode ever since, there will be good and bad days but don't let it control you at the end of the day you are the person who controls your life so don't let the PD win.

If you want to talk all of us are on here so we can learn and help others all you need to do is ask.

Take Care BB x 


#5

Hi Kat

Thanks for making the time to say hello; I really appreciate it. I'll be sure to ask if I need help and no doubt will!!

Best

 

Sue

 


#6

Dear Elegant Fowl

What a beautiful 'name'!

Thank you for reaching out and saying hello; its always difficult to start these things!

Despite being diagnosed for over 6 months its taken me all this time to face up to the fact I have Parkinson's and a bit longer to recognise that I need all the help I can get.

I have so many questions so I apologise in advance if I bore everyone and drive them crazy with my ramblings!

Thanks again for being there.

Best

Sue

 


#7

Dear BB

Thank you for being there and for being straight talking! Life is complicated enough as it is so I could do with someone who will tell it how it is!

I'll be back in touch with my questions and I hope we can chat some more.

Thanks again

Best

Sue


#8

Hi Sue

I'm fairly new on here and although very practical and matter of fact i am not like BB, I'm more on the side of not knowing until you have to then i will cope with it when it happens. This is my way of managing the condition and sometimes i forget i have it especially when exercising. We are all different and i think the condition affects us all in different ways.  Unfortunately you have have had to care for your mum so that knowledge you have of Parkinsons is very clear in your mind. I hope this forum is the support you need, as i have discovered by reading various topics, there are some lovely people out there.

Regards


Barnowl!


#9

Thank you all so much for your words of support.

I'm probably hoping against the odds that i don't suffer from some of the mobility issues associated with Parkinson's but just in case..I'm going to the gym, have taken up running and have set myself the challenge of running the marathon next year - must be mad!

My concern at the moment is a general feeling of being unwell and not knowing if the multitude of symptoms are Parkinson's related or just old age! My GP is lovely but no expert on Parkinson's..so in addition to the terrible anxiety which I try to keep at bay I suffer from:

  • difficulty sleeping
  • excessive sweating day and night
  • weight gain ( I've been the same weight all my adult life until I started taking the meds)
  • bloating
  • exhaustion

I take Citalapram and Co-Beneldopa. I was on Ropiniorole but had to come off it as I had sudden and very scary sleep attacks.

My other question is whether anyone has attended the self-management groups run by Parkinson's UK and if so, how they got on?

Any comments on any of the above would be greatly appreciated and if I shouldn't post these questions here then do feel free to point me in the right direction!

Thanks again

Sue

 

 

 


#10

 

HI

And yes fatigue is a major problem for me I have to work within my limits but still try to test the boundarys of those limits, but i recognise when i have had enough, over doing it for me i pay for it plus the following hours or following day(s).

difficulty sleeping is too, i have worked hard to time my meds, too late and i am just staying awake to take meds and my mind wont switch off if my body is trying, too early and my body wont switch off if my mind is telling me i wish it would lol, i also suffer vivid dreaming, that was before diagnosis or meds.

​I tend to eat smaller meals, not only because i don't like chasing peas around the plate and beyond because i think like everything our digestion is slower so i feel fuller for eating less, it is important too keep hydrated, dehydration(from sweating or physical effort)  = stress, anxiety,fatigue.
 


#11

Thanks so much Sea Angler.

Your comments make a lot of sense. I should make more of an effort to stay hydrated I think that might have a really positive impact.

Have you been living with Parkinson's for long?

 


#12

 

Hi

Problems came together 2013 diagnosed 2014, but i have had tremor for a considerable amount of years, so I may have developed or it was apparent that I had Parkinsons well over a decade ago, I first noticed tremor maybe 15 yrs ago, i suppose that says PD has been slow moving I'm hopeful that continues to be the case especially now i am receiving  treatment for it & that we often hear new treatments/leads/idea's/concepts are in the pipeline not only with parkinson's but other area's as well.


#13

My Consultant thinks I've had it for 10++ years as well but it was only last year that I could no longer hide the tremor and I had increasing pain in my shoulder and arm.

I shall put my energies into fund raising and raising awareness in the hope they do indeed get closer to finding a cure.


#14

Parks,

I supported my Mum for the 10 years she lived with PD. It must be hard facing the same diagnosis. Have any other family members been diagnosed?

Remember though that everyone has their own journey with PD. It is a very individual condition. Everyone has a different set of symptoms and issues. Different medications and treatments that work. And things are moving with the types of drugs, and the knowledge that the professionals have has developed over the last few years a lot.

This forum, the PUK website and helpline will all be a helpful to you I am sure,

Take care

Keld


#15
Hello Sue all the symptoms you mentioned are classic PD symptoms. I appreciate your dear mum had this but that does not means yours will follow a similar pattern. I found that any meds I take for PD if my sleep pattern is going to be at risk then yep that is the side effect that will effect me. I used to be able to sleep 14 he's straight through then I get dx with PD.and bingo sleep pattern goes up the wall. I have to take sleepers now otherwise I am lucky to get 2hours, on sleepers I get roughly 4 to 6 per night. I have tried all manner of natural methods without luck and there is something to be said for quality sleep as aposed to quanty. My 36 pills per day have made me loose weight. We need fat reserved to distribute the meds effectly. Are you only in one parky med? I am on 5 different types Joining you local support group is worth looking at I joined Lincoln and district branch 4 months after dx and I can honestly say without them i would have cracked up by now. I Also am the youngest member at 50. You have life b4 PD and life after it is your choice as to how you can manage all that you do. My advice is to take it day by day but most of all FIGHT it don't let it consume you. My PD KNOWS I will always fight her I have to. Best wishes BB xxx

#16

Hi Sue,  I have been quite fit most of my life but have 3 major health issues which cause extreme tiredness, its strange though, as soon as i was diagnosed with Parkinsons i wanted to do no end of physical challenges to push my body out of its comfort zone. Plainly speaking i was sticking two fingers up to it all and trying to cram as much in as and when i could. 5/6 years on from diagnosis i am still challenging myself, I completed the Tough mudder course and 10k last year, this year i have finished a 10k and now training for a 100k charity bike ride through London at night. We are all so different, but i have achieved more physically with Parkinsons than i did before diagnosis..  When the PD develops more i shall adapt and keep challenging.Fear is a terrible burden it blocks your potential to enjoy life. My philosophy but not everyones is not to read too much of what negative elements PD brings to you as a person, we are all different and what happens to one doesnt necessarily have to happen to you but you can be a long time waiting for it to occur. Rest when you can , listen to your body and do what you can to challenge the Norm.

As for asking questions, i dont think it matters where you place a question as one topic can drift into another but if you want a better response from more people possibly ask the question on the relevant topic i suppose. I guess any way.  good luck

Barnowl1 x


#17
Hi barowl1. You are not like me in a way there is. Similarity, Plainly speaking i was sticking two fingers up to it all and trying to cram as much in as and when i could. 5/6 years on from diagnosis i am still challenging myself. I do that with words you do it with actions I respect that greatly xx BB xx Action talks bull s××× walks xx

#18

Hi Sue

 

husband been diagnosed 3 years ago and he has trouble sleeping, is always tired and sweats like mad among other things.

He is also one that does not want to know up front what could be coming his way and apart from being tired and always needing an hours sleep in the afternoon, Sweating and only sleeping about 5 hours a night, he has been so far pretty lucky. I want to know what could be next, so I have joined the forum.

Hopefully you got lovely neuro and a even better parkinsons nurse in your area as the GP is pretty useless. They know how to identify Parkinsons but that is about their limit, at least in our surgery.

 

Welcome to the forum, but remember it is a very very individual journey. Seems like no 2 people are the same or react the same way.


#19

Parks.

I'm sorry you've had the double whammy of caring for you Mum and then the signs you've been trying to deny for years fall into enough of a pattern for the PD diagnosis.  What's worse in many ways is that what you've learnt helps your Mum can't simply be adopted by you.

However, it can be adapted.  Look back at how your Mum's symptoms were investigated, how the drugs were chosen and how they are meant to help versus how well they do help.  It the communication of your symptoms that's key in getting both the medication and timing right for you.

Sleep issues are related directly to your dopamine state where your body can rest.  Investigate your med timings related to day time drowsiness, then replicate near your ideal bedtime.

You've already identified the most important activity is being active.  A word of caution though, the key ageing factor is muscle mass loss, not getting your body fat below 15/20 M/F.  If you feel like your exercise is 'killing you' it most likely is.  You should feel toned and flexible within an hour of finishing.  If you need ICE baths or feel guilty for eating a small bar of 'whatulike', LIFE has become a chore. Simple body fact, if you crave salt, butter, cream etc. your body is telling you you've depleted the reserves too far. Like PD, everyone has their own 'comfortable' zone.  Just try to spot the 'I'm satiated' phase when eating when the flavour isn't as intense, then stop and plate up less next time.

I am 55 diagnosed 11 years now and my energy / fatigue levels are currently at their highest / lowest for at least 15 years.  Since the new year I have begun exercising much more and WALK (for Golf) about 20 miles a week.  I do NOT hideous amounts of unrelenting aerobic running, cycling, cross trainer.  I do 90% of my weight limits on the resistance machines as hard as I can for 30 - 45 seconds.  I then rest for 1 minute and go again on the next machine that uses the opposite muscles in the same limb.  I keep my heart rate up around 130 on average but if I'm out of breath I rest until it's below 100.  In a typical 1 hour inc. 5 min warm up and 10 min stretch I burn I burn 800 calories.  I have removed 4 inches off my waist, I'm a stone lighter and even more scary, I can say 'I'll have that choccy later or only nibble a bit , not the whole bar.  Not quite there on biscuits, which fall out in batches of 4.  Must be how I hold the packet...

Life has become a lot more 'opportunites' not 'limitations'.  I still have nearly half the day when I'm in various stages of OFF.  But when I'm ON I'm FULL ON. (getting carried away now).

What happened around the New year?  When your symptoms start appearing like they were 2 years ago and your meds are being reduced, something is going on.  It's becoming obvious to many that I'm really really positive.  There's a little while to go before more can be said.... 


#20

hello Swiss miss if you want to learn about this condition i can recommend the following FREE PC course it is run by future learn via the university of Birmingham and its called  GOOD BRAIN BAD BRAIN PARKINSONS.

I have learning difficulties  to the point I can not even spell the word that i am thinking of but I scored 84% and i am very proud of that. My PD nurse during a med review when my sister piped up who is in charge and who is the patient he told her Karen knows her thing.

Even my specialist has said my knowledge into my Parkinson is outstanding.

At the end of the day I have it they don't no one knows me better than me. 

If you need to talk message me and I will private message you my mobile number, just remember I am very straight talking I know no other way.  BB xx