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Pip

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pippi
Pip

Hello all.I am awaiting results for MR I and datscan but my  neurologist is pretty sure it's parkinsons and started me on leledopa. I do feel better walking much better and writing almost back to normal..trying my hardest to stay positive as only 49 with 3 childrent but feeling very alone as the reaction I'm getting from well meaning friends and family is one of shock and pity  and acting as life's over.feel I don't want to tell people now.don't know anyone with parkinsons. Does anyone else feel like this.also waited for diagnosis for so long scared results maybe worse than parkinsons .my anxiety is definatley not helping my symptonson. Sorry to moan

DivineR

Hi Pippi, 

It can feel like you're alone but telling people I feel is a good thing. How they react is their problem. I found in the beginning I ended up comforting them. 

I'm 51 with 3 boys so I can relate. Waiting for formal diagnosis is Nerve-wracking but once that's out of the way get on with your life. You're living with Parkinsons not dying from it. Keep yourself healthy and exercise. Get support from a young parkinson's group (if available) ad find out who your local PD nurse is. It's alot to take in but ask or rant or inform on here. Someone will answer eventually. Good luck 

pippi

Thankyou for your reply.nice to hear some ipositivity!!will ask about a parkinsors nurse.how olold are your boys?

DivineR

Hi, 

Don't get me wrong there's lots of ups and downs. I'm only 15 months into diagnosis. Like everyone symptoms were there a few years before. Also everyone's symptoms are not quite the same which makes diagnosis hard. 

My kids are 17 and twins 14. They are a great support as is my husband but I worry about them too. Hopefully we can keep communicating and get through it as best we can. 

pippi

Mostly I feel positive but I get the odd day when anxiety takes over a bit.I have 2 daughters 18 and 13 and a son of 15 and also a wonderful partner..they are my reason for staying  positivie.also keeping a sense of humour too.I work in a special school for children with disabilities which is a bit  ironic but at least I can empathise.I'm hoping I can continue to worrk and drive.

DivineR

Very similar ages to mine. It is a big change in the kids lives but hopefully they also can learn that life throws things at you. It's how you deal with it that counts. 

Inform dvla after diagnosis and they'll send you forms and contact your neurologist and gp. As long as they support your driving, you will get a 3 year licence. This is reviewed at end of 3 years. You can still drive during process. 

You're job must be hard work but very rewarding. 

SkyeBlue

Hi Pippi

I'm also new to all this. Mid40s with 1 small child. I'm not on Levodopa but trying rasigiline. Not sure it had much effect, but think I'm going to try and delay further meds for now. Though I think differently on tough days. 

As DivineR says, stay positive. You're not alone. 

Best wishes to you both

SB

 

 

pippi

Thanks didivineR and hello skyblue!  I'm not sure why the neurologist has put me on ledopa so early maybe part of trying to diagnose. A bit concerned as I hear it only lasts 5 to 10 years.which takes .me to 59 at best.could I ask what are your main symptoms? It's so nice to be able to talk to people that understand!

DivineR

Hi Pippi, 

Symptoms started a few years ago. I had a neck problem and was concentrating on that for a while. My right arm was affected but attributed to neck. Then when my right leg started dragging I was referred to a neurologist. Then scans and diagnosis. I went on meds about 6 months later. I got Voluntary Redundancy from my airline job after 25 years at same time. I was lucky there as couldn't have continued. I'm doing 20hrs a week in a large department store, I love it.  Tiredness is the main thing as I get weak and a heavy pain in the back of my head. Weakness on right side. I may go on to levadopa in autumn but holding out. 

There are two schools of thought. 1. Hold off meds till really need them. 2. Why suffer needlessly if meds help with symptoms? 

As you know sometimes the side effects of meds are worse than the symptoms. Getting the right fit can take a while. 

pippi

Thats interesting as similar symptons to me.meds have really helped my walking and general slowness but instead have loads of tingly feelings in hands and feet.still also have neck pain and a general feeling of uneasyness.its a very strange illness.go back to work next week after summer hols.at least i will be able to walk down the corridor without people saying pick your feet up!!!good to hear your enjoying your job.hope youve had a good bank holiday

Divine1

Hi Pip and skyeblue,

DivineR back as Divine1. Tech issues. 

Pip did you say what meds your on? I find my right hand and leg are more stiff than before. I'm on Ropinerol 8mg at mo. 

Hi skyeblue, it must be difficult with a young child as I find the fatigue can affect my interaction with my kids sometimes. I try fight it tho. 

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