Linda


#1

Recently diagnosed with Parkinson and absolutely hating my loss of independence. Not fit to drive having driven for near on 50 years! Many of my friends are non-drivers so meeting up is not easy although keeping in touch is accomplished quite well with laptop, pad and mobile. It’s just not the same.
I had a bad reaction to the medication with screaming nightmares, migraine, sickness etc but have failed to find in the forum anyone with similar problem. Consultant said that the medication causing this is in all the tablet options. I see little point in taking something that make me worse.
I still work as a bookkeeper a couple of days a week and help with a family member’s craft business. I also volunteer for Alzheimer group and Dorset Dogs - mostly on the office side.
I guess that’s a general picture of current life which is having to change due to slowness and tiredness.
Am looking forward to ‘chatting’ and finding out about anything that makes managing this disease easier.


#2

Hi Linda,
My symptoms are not similar to yours but I too have had trouble finding effective treatment. I also fed up of the blasted PD and other health issues taking over my life especially loss of independence.
When younger and able to do most everything for yourself it’s crazy how now not able to realise how much to take life for granted and the saying u don’t make the most or what u got till it’s gone.

Sorry enough of the negative I now take hour of each day as new one and trying to replace any negative with positive. Also stepping out of comfort zone (scary as it is) and doing things I once would have not done…

Tonight for the first time Ii’m sleeping away from home at my sister’s which never have done before and not sure how i’m going to get home even though only 1/2 hour away. Looking forward to waking up and spending some time with my niece…
I feel that filling as much quality time building happy lasting memories with special people in your life is good.
If feeling down stick on a happy tune one of my nana 's fav’s was bring me sunshine… My fav at the moment is Ed Sheeran Perfect, an old one I like tommy roe Shelia… u can’t a bit of Kenny rogers and dolly parton…
Anyway better get some zzzzz before I get woken up by my neice.Haha…


#3

hi linda wonder if patches may suit you better ask your pd nurse
Petec


#4

Hi Ollyboo
Love the name. Much of what you say is true. I have spent a good part of my life helping others and my daughter & many friends say “now think of yourself” which, in essence, is probably what I would say to others but it’s always easier to give advice than to receive it. On the whole I am a positive person but how much easier to be positive when you are in control and not relying on others.
Good luck with the sleeping away and have a wonderful time with your niece.


#5

Thanks Peter - will inquire on next visit to hospital. All alternative ideas welcome. Linda


#6

Hi Linda,
I’m 48 years old I was diagnosed with Parkinson four years ago. Everything collapsed then. I’m also accountant, but because of several health problems I retired. I was slowed down in everything I did and had trouble working. Now I work from home and set up an association of Parkinson’s patients, “The Soul of the Tulips” that helps me feel as useful as possible. You have to have a lot of patience with you. Parkinson’s is different from person to person. Be strong.
With friendship,
Emilia-Paula


#7

Hi Emilia-Paula
Lovely to hear from you. I quite understand how “everything collapsed”. At the current time I’m trying to hang on to everything I can. . “The Soul of the Tulips” is a wonderful name and I wondered how you came to use it. Having now done a search I understand how it has been joined with Parkinsons. Ever thirsty for knowledge!
Fortunately patience is something I have had all of my life but it is easier to have it with others than myself. My grandson has aspergers which requires so much patience and I have several friends with medical conditions which are so much worse than mine.
The amount of time in a day in which I can be busy has severely reduced but I still wish to cram in all I ever did - and I can’t! Working out what to keep and what to lose is difficult. And have run out of oomph now so will close.
Indeed, in friendship - Linda


#8

Hi Linda,
Life offers us a substantial package of trouble. But we have to fight to survive. Now there has been hydrocephalus, which gives me terrible headaches. It’s very hard not to work, not to enjoy the results of our work. I have moments in which I feel an irrelevant person, I feel emptied of any joy in life. But I fight and get up every time, I help people with Parkinson and this color my life. I’m sorry about your nephew, it’s very painful, but you’re strong and you’ll turn any hindrance into a victory. Much power in the fight with life.
With friendship,
Emilia


#9

Hi Emilia
Thanks for contact. What seemed to jump out at me was your comment “I feel an irrelevant person”. Only days ago I came across something I wrote many years ago about how I was a mother, a daughter, a wife, a taxi service, a nurse, a friend - but where had Linda gone! We become so many ‘things’ to others but now it’s all about re-finding ourselves.
I have found myself clearing out anything that i can and making physical space to operate in. Not the memories like photos or the practical like sewing but all that clutter we think we may need one day - and never do!
May your terrible headaches calm and leave you. Friendship is a wonderful thing. Linda