Newly joined


#1

Hi out there!

I am new to the group and not sure what i'm doing!

I am 49 diagnosed in Nov 2015 after a year of symptoms developing;a DAT scan finally showed deteriorating brain cells on my left side.  I struggle with balance, walking is laboured, I've developed a stutter and have this shake on my left side im constantly tired. My whole world is upside down, I plan to do loads in a day and usually manage one task! I feel guilt my husband is running his own business and running the house! I still drive but dont like going out alone, I feel like i'm apologising to people all the time ! Has anyone got any tips on how to combat the stiff leg muscles? I fall over easily infact I stumbled this morning fell on the toaster and burnt my arm. I feel so alone and sad.


#2

Hi nittyboo,

I'm sorry to hear that you're feeling alone and sad, it sounds like a tough time at the moment. Please do remember that support is out there, and you don't have to face things alone. This page lists some of the support available: https://www.parkinsons.org.uk/content/support-you - and if you want to talk things through please do give us a call on 0808 800 0303.

Take care,

Joanne

(Digital team) 


#3
Thank you Joanne I'm hoping when I get my Parkinson's nurse she might be able to put me in touch with local groups I can join. That's why I joined on here to talk to. People going or have gone through this as well. It hasn't helped in me coping as mum died suddenly last august admist my diagnosis, we think she wouldn't have dealt with me being like this.

#4

Hi nittyboo,

This is definitely a great place to talk to people in a similar situation - I'm sure other forum members will be along soon.

And if you want to have a browse for local groups in your area, this page has some more info too: https://www.parkinsons.org.uk/content/local-groups 

Best wishes,

Joanne 


#5

Hi nittyboo

Youre Definately not alone on here and so many folk have the knowledge and experience of handling and dealing with this awful illness. I too was diagnosed last November  after finally having a dat scan. I'm on madopar small dose three times a day.  The tiredness is hard I know.  I suppose it's just a case of doing things when you are able and resting other times but pacing yourself.  My limbs seem on a go slow at the moment. Not sure really what helps that. Perhaps other members can suggest helpful answers. 

The forum is very helpful and the team will help too if you phone them. Meanwhile take a day at a time and keep positive. Wishing you all the best

sue


#6

 

Welcome to the forum nittyboo, as Sue says you have to learn how much your body can take, we are all different, we all react differently in how PD effects us as individuals. Once you have a PD nurse she will give you numbers of professionals you can contact for help, alternatively you can phone the helpline number at the top of the page at any time and about anything, or ask anyone on the forum. It takes a little while to accept the diagnosis, I have had PD for six years, and  to be truthful I have only in the last two years come to terms with it, also once you have the right medication, you can start to live life again, in moderation,

All the best - Sheila


#7

Hi nittyboo.

It is hard to balance everything when so tired. I go by the old mantra of make hay while the sun shines but still have to remember to pace myself in case I over do it and make myself worse. Try not to feel guilty. It takes a while to find the right pace and adjust. Feeling guilty will only bring your mood down over something you have no control over. I too don't like to go out alone, I have memory issues and don't always know where I am. But it is important to keep in touch with your friends and enjoy life. You might find a Parkinson's group in your area that can give you support? The forum is very helpful to.

If your husband feels he needs support, there are family and carers of pwp on the forum as well.

Take care


#8

 

Hi


Fatigue has been a major part for me, I try not to plan, there are days when im stuck in bed, what needs doing can be done another day, days when i can do a bit, and days when i push my self and my limits but mindfull that too much and i pay for it in the following hours and day(s)

a local group has been set up in my area for working age adults, i dont attend everything as some things arnt for me or i have other things to be doing, but once a month they have doggy walks whether or not your a dog owner, a walk or 2 or 3 miles then a pub lunch, and cinema too, they do other stuff like yoga,dance,bowling ect they meet for a chat/social about every 3 weeks.


#9
Thank you all. It helps to know I'm not alone in this. I feel Im in denial...I wake up and as nothing is shaking or hurting I make the decision not to take any meds ...to rule the world...run a mile ..then I get up.! Different story! I'm trying to take each day as it comes but I struggle I find myself explaining to my 2 westies why mummy can't walk today! Maybe I should make myself walk not matter how I shuffle and struggle? I find as I have for a while a 20 minute sunbed warms me through the girls put my shoes on for me and adjust my tops as my left arm doesn't comply with my head! My hubbie says we need to migrate to Spain! Once again thank u for the support. Xx

#10
Hi sea angler I thought it was me being ...well me ...not getting up some days I thought I was as my son said having a " oh wow is me " moment ! What I hate most is the not being able to walk properly I sort of set off n stop if that makes sense? Thanks for your support. X

#11

Hi nitty

did you find the shop sign at the top of the page for bands and cards , don't know if it will help you but try a metronome or head phones with music that has a beat that you can keep time to when you walk it seems to help but we're all different just try anything keep busy good luck 

Ian xx


#12

Hi nittyboo

husband has got parkie and now on meds for the past 3 years. Aches, pains, sweating, drooling and the ever tiredness are still there. He has found it works for him to have a afternoon nap straight after lunch and that keeps him going for a while. But everynow and then he needs another rest in the morning and late afternoon again. You can never tell if and when. We don't plan anything these days, just go with the flow! Keep busy and don't get too down. Exercise does help, so keep taking your westies for walk as often as you can.

take care


#13
Hi Swiss miss Thanks for the comments I haven't been on the site much so have just seen it. I'm doing a lot better these days my medication keeps being tweaked so some days I'm ok others I'm knackered all day. I think it's starting to sink in that I have this problem and am trying to live with it best I can. It's the fatigue that gets me down more than anything. Like you say you can't plan anymore it frustrates my husband so much and I'm not sure he gets the fact I can't help it. !