I have young on set Parkinsons


#1
I was diagnosed in 2008 at age 38 years old after being misdiagnosed for nearly 3 years. At first it didn't seem so bad and I carried on life with break neck speed- finger firmly on self destruct - 4 years on I am single mother to a beautiful very active 1 year old, my career pretty much destroyed and symptoms that seem to worsening on a daily basis - I am struggling more now than ever to come to terms with my condition, I hate it with a passion, I google with horror and live in fear of what will happen - I had such courage and bravery but this freezing started and it has crushed me - i read it only happens late in the illness and when the drugs don't work anymore - stress, lack of sleep, loss of appetite, anxiety, pressures of life, working full time as a single mum I am told is making it worse and I am addressing all these issues but can anyone offer any help or advice - I feel inconsolable about my life with parky but must keep on fighting and need to find my mojo again x

#2
My heart goes out to you.

It is easy for me to say but difficult to do especially in your circumstances. Try to remain positive and demand help from your GP, your Welfare Officer and your PD Nurse.

I am sure you will get lots of advice from the knowledgeable PWP's that populate this site. Hopefully someone with similar experiences to you will point you in the right direction.

My reply is mainly because I am touched by your predicament and I wanted you to know that someone cares and I know a lot more will when they read about your plight.

#3
Hi welcome to the forum!!

It's not easy living with PD and it's harder still being a single parent! You have my respect just for that. But do yourself a favour don't read all the things in books and on the web like they are your future! The way to use such information is reference the other way just provokes anxiety and nightmares!

We all experience PD uniquely and whilst we share symptoms presentation and timing differ, exercise and relaxation helps ( I know your a parent!) Use the services around you, your employers have a duty of care under the Equalities Act and you can request assessment for assistance/adaptations from access to work at the local job centre plus. They assess your needs and then pay 50% of the costs your employers meet the rest, can even help with transport.

We all hate it by the way your not alone! But we accommodate what we must and life can still be good if not the same! I am 4yrs post dx and working full time in a stressful profession but it helps balance me.

See what is available to support your parenting from local children's centres if your normal support isn't enough.

I wish you happiness/hope/Love and more Also the Bogman is wise and advises well as do many here your not alone.

BJS

#4
Dear mariposa,
I have been there - what am I talking about - I am still there! Freezing is one of the most frightening, demoralising, demeaning, diabolical experiences. I cringe at the thought of the times I have been stuck in toilet doorways or caused an obstruction in supermarket aisles. How many times have I sunk to the floor at home and crawled to where I wanted to go.
But, you have got to smile - later, of course. You can't lose the condition but you can't let it beat you either. Live for the day - and if it is a bad one - if you can - have a shout and a swear and undoubtedly a cry, but then do your best to get into bed and sleep. I find a large swig of Baileys a pleasant reward for suffering all the CARP - re-arrange the letters.
I'm lucky, my children are grown up and I have a great husband whereas you sound to be alone. But I'm not OLD! I was diagnosed sixteen years ago at the age of 41.I object to my life being ruined but there's no way I could have stopped the pesky condition. We are all in the same boat.
Talk to other pwp's because they know much more than anyone else and have great coping strategies.
I have rambled on as usual but I do sympathise and if I could do anything to help you - I surely would.
Oh hell! I sound so patronising and school ma-am ish. I mean what I say in the kindest terms.I am thinking about you.

Lin
x

#5
Hi Mariposa
I can only agree with what everybody else is saying it must be so hard to deal with being
single and having a little one I felt desperate when d x 2 years ago aged 47 with a supporting wife
and family but your not alone theres lots of caring pwp s on the forum to listen
Ive also had lots of support from friends and my daughter (11 going on 22) keeps me going
for me things improved when I met my new pd nurse
All the best to you and your 1 yr old Adrian

#6
Hi mariposa... there's me, mooching around the forum... no particular reason, just at this time of night with the rest of the household in deep slumber (including the cats) there am I, with the usual 'can't sleep' thing, looking for a bit of common ground/reassurance as you do.. Those that have replied already are great people, and BJS and I have corresponded much previously... you've come to a good place, believe me - we can't offer miracle cures but we can give you our reassurances encouragement and a listening ear (things we can't do for ourselves) - again, believe me, we all know the feelings of anxiety.. and let's be honest... fear sometimes... you are so very much not alone... especially now you've "signed up"...

Keep being part of us now and you won't feel so alone - ask questions (but don't forget the "professionals" on the HelpLine - honestly, they do exactly what it says on the tin... They are brilliant).... For now, as BJS says, be assured of our thoughts, concern, even prayers (if you're into such)... Hope the immediate responses go a little way to showing how we care for one another.. (by the way... I'm part, or should be, of the English Olympic Team for fretting/worrying- we're all there in some form!!)... Hope you may be able to relax just a bit
now - somebody will always be here..

Keep in touch... tomorrow is always a new day.... and now you've got a bundle of new, and understanding, friends to talk to.. warmest wishes....

Bursardavid

PS typical my luck - iPad battery ran out- should have been sent about 2 am - but hope today is a better day

#7
Freezing, which I have not experienced yet and long may that continue, tends to come later on but is not necessarily a sign of advanced pd or that the medication is wearing off. There are lots of things people do to overcome it some of which are in http://www.parkinsons.org.uk/PDF/FS63_FreezinginParkinsons.pdf if you haven't read it yet.

ps A one year old - aren't children wonderful at that age?

#8
Hi mariposa

Welcome to the forum. You will get excellent advice and help on here. It is very difficult to come to terms with the dx of Parkinson's. Not that we ever do except it but have to cope the best way we can. Try not to think about the future ahead just take one day at a time. Yes, you will have good days and then the next could be bad.
I was 48 when dx and that was 6 years ago now, live on my own. still working full time and although it is hard I keep pushing myself. Fatigue is the thing I get so tired and the stress does not help at all.
Can not be easy for you as a single parent with such a young child, but try to remain positive, chin up!!
Keep posting and let us know how you are doing.

take care PB x

#9
Hi Mariposa

Sorry to read of your increasing problems. I think that at one stage or other, we have all hated this illness - many of us still do. Problem is that until some wonder cure comes around the corner, we have to live with it - easier said than done ! Keep your spirits up lass and always remember that you have many friends on the forum who are only too happy to help and cheer you up.
Best of luc k to you
Chunky

#10
Thank you for all your wonderful and supportive replies - I suppose I keep hoping that someone will be able to give me a prognosis but that is not possible with parky and I just have to, as many as you encourage, take each day as it comes. I took my daughter to the swimming pool this morning - we had to sit in the car outside for 20 minutes singing nursery rhymes until the freezing passed but I was determined and in fact in the water my freezing goes... we then went home and did some gardening together and i cooked a roast - I am like Julie Walters in the two soups sketch when I freeze http://www.youtube.com/watch?v=Z6aYLOf8CUQ
[Apologies for removing this. We're in the process of reviewing our links policy. -Ezinda]

- at least I hope it makes you all laugh. Tomorrow I shall go to work in high heels and red lipstick X

#11
I reckon the high heels and red lippy great idea add a smile for perfect outfit :laughing: Swimming really helps too the strangeness will pass remember the saying 'accommodate but no surrender'

BJS

#12
Hi Mariposa,

So sorry to hear that you're having such a bad time. I was dx end of 2008 when I was 56, I think I'd probably had PD for about 2 years by then. I've been having a lot of trouble lately with my medication seeming to just switch on and off. I am very lucky that I have my husband to support me (literally at times!) It seems that when I'm good I'm really quite reasonable but when I'm bad it can be as though someone's tied me in a knot and I can barely move, I can't bear to think about it.

I have to agree with the person who said don't take everything you read too literally as we are all different with our own unique set of symptoms and what happens to someone else won't necessarily happen to you even if you seem, on the face of it to be similar.

Please be comforted by the fact that people on this forum do understand, I'm sure it must be so frightening for you and extremely difficult to come to terms with because that's how it is with me and you're so much younger than me. I think there must be the right medication and routine for me out there somewhere, it's just a case of finding it.

I'm pleased to see you've still got a sense of humour, I too often think I must look like Julie Walters in that sketch.

Keep smiling and applying the red lipstick.

Best wishes Leogirl:smile:

#13
i know how u feel was also 38 when diagnosed not nice

#14
you are doing well to get censored in only your second post! it took me ages to reach that level. (just joshing E!)

#15
I am 64. Was a single parent and found weekends difficult with small child, used to go to the pool too. My PD developed at 57 so my child is grown up. I can only offer a tiny thought, try and relax at weekends. I used to be quite lonely as my friends seemed to be occupied with their own families. With hindsight, I would have been better to be around my ex in laws and their families. (My family was far away). For me, I found it much easier to be with friends or family when you have a small one, even for a short break. Hope everything works out as well as possible.

#16
On reading,you had a lovely day. Anyway hope my tip comes in useful from time to time.

#17
Hello again

I haven't been swimming for ages - I used to go regularly - but lazy old me can't be bothered to undress/dress etc. However, I am going to make a real effort to go this week.
I read somewhere, that for your safety, you should tell the lifeguard on duty to keep his eye on you, just in case you have a freezing attack in the pool. I know it is a pain advertising your condition, but I think it is sound advice.

Now, where's my latest lipstick? High heels - how I wish!

Have a good day

Lin
xx

#18
HELLO LEOGIRL

I am having the same problems as you. What medication are you on? Every stalevo I take sends me 'off' almost immediately. The answer from my neurology team seems to be - take more stalevo!

I'm having a real struggle.

Lin
xx

#19
Hi all - well i made it into work in high heels and red lipstick -guess what no freezing today - just a bit shaky as had to face out someone on a situation that was tricky. But no freezing today - all my meds crossed over and I took them slightly later than usual which meant breakfast was a bit stiff. This year in October will be four years since I got diagnosed, I got pregnant in June 2010 and had ill advisedly carried on taking all my meds but luckily my little girl is perfect, but during my pregnancy I was symptom free - has anyone else experienced this? There must be some hormone therapy treatment in this? It was about 4 months after i had my daughter that the real big problems started - until that point i was doing great - the things that all coincided were 1. I went back to work full time as a single mother in TV (where they take your pound of flesh) 2. I kept moving house and away from my friends hoping a new start would somehow eradicate parky 3. I was put on Stalevo which I am convinced triggered something in me as I was like a mad woman, really manic, and wired - it was this exact week freezing started. It takes no form some days good and for a few weeks, some days hideous, some weeks hideous 4. I used to run in 10k runs, do pilates, swim nearly every day but in my pregnancy i was huge - 5 stone heavier with severe water retention and stopped and just haven't got back to that level or anything near it - i lost the weight and then some but i think that is the meds so now i am determined to get back to that level of fitness again as actually in a freeze i can drive the car, swim in the pool and run down the street - i just can't walk -actually easier in high heels strange no? Also I seem to be very young to be on the drugs i am on and to be experiencing freezes - does the freezing ever stop? Or is that it for ever? so many questions i have and will keep on posting as finally i have someone to talk to who understands - thank you xx

#20
Hi mariposa
I've been dx with pd last nov.the pd has hit me bad just lately.ive been dx ith stage two and yes I freeze nd have all the non motor symptoms and pain.id say you can get any symptoms at anytime so don't try and work out how long you've got left.thats what I did when dx.im now living one day at a time(literally I have three hours sleep if I'm lucky).i find keeping busy stops me worrying.but if you have problems don't sit on them come online someone will quite often be experiencing the same or pester your gp,pd nurse etc.
All the best twins 99