I was diagnosed in 2011 and have mainly carried on with my life as before. Im 69 and retired so dont have to worry about work. I have slowed down quite a bit and suffer the usual problems of constipation, unable to turn in bed, loss of sense of smell, insomnia etc. My worst problem is my legs. They ache so much at night. Ive tried magnesium oil and find it works sometimes but not others, also it makes my skin itch for days afterwards even after having a shower. During the day I find I cant walk far as my legs feel like jelly. I have a wheelchair but only use it when things get really bad. I wonder if anyone else has problems with there legs.
Hi there you are not alone. I can’t turn in my bed and can’t walk very far and always need to sit down. I also have a. Wheelchair when. I go any distance
At present I walk with a stick after having back. Surgery.I just feel this is all. Part of PD so I will need to just get on with it.
I wish you well and hopefully a few others will be able to offer advice. Babsx
Thanks for the good wishes. I dont use a stick yet, but always hold onto my hubby when out walking, I dont feel very safe walking on my own
You are the 1st person , with pd, I have spoken to since my diagnosis. Ive thought about going to a local pd group but have been afraid of what condition the other people might be in, knowing that I will be like that one day… I hope this doesn,t offend anyone, I just think it might be upsetting coming face to face with the reality of PD.
Hi there that is exactly how I feel and why I have never been to a PD group. I have had PD for 5 years now and know that in the last couple of years I have got worse.I hope you are doing okay just now. What meds are you on for PD.?
Take care Babsx
Im pleased Im not the only one afraid of what i might find at a pd group, Id rather not know what the future may hold.
I,m on levadopa, 6 times a day and a slow release one at night also rasilagin in the morning.
I also take a magnesium tablet at night to help with the pain in my legs.
We just have to grin and bear it I suppose
I was concerned about going to a PD group too.
But I went anyway.
I discovered that my area (North West Tasmania, Australia) has two lovely PD nurses who made me welcome.
I also discovered that there is a lot of support available for me when I need it.
(No neurologist, we have to travel to see them)
The main thing I went away from my first meeting was - There are a lot of people around my age or a bit older who are managing quite well. Sure, when you know what to look for, the signs are there but they manage to have a reasonable sociable life. I came away heartened by my prospects.
I am glad I went to that first meeting and will attend whenever I can.
I will just concentrate on the positives I see there.
Give it a try.
Thanks Jim, for your reply. I might be brave enough to try it one day, but not just yet.
It’s a hard one for sure. Friends of ours who knew my husband before the arrival of PD see the person he is and not the condition, but people meeting him for the first time go away with a very different impression of what he is like and I hate that. There is no getting away from the symptoms but I guess it can be helpful to see and hear how others are coping with theirs ( not that our local group seems to go in for such discussions but I am workin on it!). No right or wrong , just what is right for you. Groups seem to vary a lot too.
Adjusting to a new way of life after being diagnosed with Parkinson’s is not an easy process, so I definitely sympathise with you and your husband. It’s clear to see that you’ve received a lot of support from the forum which is lovely, you may also find it helpful to join one of our local groups to speak to other carers and family members that are going through similar experiences to you.
The groups welcome family members and carers, and some involve health or social care professionals. For more info, feel free to visit our website here, https://www.parkinsons.org.uk/information-and-support/local-groups.
Hope this is helpful.
Take care for now.