Pip


#1

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


#2

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 


#3

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


#4

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. 


#5

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.


#6

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. 


#7

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

 

 


#8

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!


#9

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. 


#10

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


#11

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. 


#12

I find the same i feel i zone out alot and dont always listen to my children with the same enthusiasm that i used to which i hate and like you try hard to combat.im on madopar 50 mg/12.5 mg at the mo 2x3 times a day. which is levodopa and benserazide combined.not sure if i will stay on this or the neurologist has given me it to help diagnose.hope you are both well.im back to work/school tomorrow.back to routine and that morning rush trying to get ready and waking 3 reluctant teenagers!!!x


#13

Hi Pip,

Yes it's back to school Tuesday for us. A busy Sept I reckon.

Hopefully your meds will help you get through work. I'm sure they can be tweaked if not. I have an appointment in Oct with neurologist so may add something to help with stiff hand.

Good luck with your return to work! 


#14

Hello again!got my long awaited letter from my neurologist on friday.MRI all normal which is a relief but datscan revealed low dopamine levels on both sides.which confirms parkinsons or parkinsonian syndrome what ever that is?also need to have another blood test as my rheomotoid levels high.shes not sure what significance this shows.so a little further forward just have to wait again to see her!


#15

Hi Pippi,

That can't have been an easy letter to read. I reckon the 'syndrome' and Parkinsons are one and the same.

I've never had a test for rheumatoid arthritis, so can't help you there. Have the meds had any effect yet? Hopefully they are helping.

I've got a Pd specialist physio coming tomorrow to show me PD warrior exercises. It's expensive as she's private. She's trying to get NHS interest but that's taking time. I'll try a couple of sessions and see if they help.

Take care of yourself. 


#16

Thanks DivineR

that sounds iinteresting have heard those execises can really help.my meds do work but still have quite alot of symptoms.may need tweaking.good luck with the excercises!


#17

Hi.

I had 2xhour sessions the last 2 days with a physio who wants to promote PD warrior.

She taught me the 8 or so moves so it's down to me to practice. I can't make her class with work. It could prove expensive.

My PD nurse is keen to get it started in the area.

Give the meds time. Try finding time for yourself. I find that hard but am really trying to be a bit selfish. 


#18

Sounds good if your able to be disciplined with exercises.definatley worth a go.still waiting to see my neurologist and hopefully get a parkinsons nurse.went to see my GP just to touch base.he is lovely and very kind but a bit clueless when it comes to parkinsons!!!just kept saying youre just so young!!dont feel it at the mo!!a friend mentioned about a PIP benefit which could mean cutting down at work to part time.have you heard of this?good luck with the exercises.let me know if they helptake care


#19

Hi Pippi,

I don't know much about Pip assessment but think it can be a mine field. Maybe contact PD UK admin or post a direct question on here.

I've managed to do the PD exercises a couple of times but it's not the same as a class.

Finding a good PD nurse can be crucial as if they can't answer your questions they will find out. Also they can be a middle man between you and your consultant.

Can you speak to your human resources department to discuss reducing hours? It takes a while to get your work /life balance to where you are stress free.

Sorry I'm not much help with PIP. 


#20

Hi Skyeblue,

Haven't heard from you in a while. I hope you are well and that you are handling life with a baby and all that PD throws at you.