Its a subtle change in thinking but for me has been the most powerful resource I have in managing my life with PD. Around the 10 year + now I am told I am remarkable those are not my words but certainly I seem to have found a way of living with this condition with some balance. My days can be exactly the same as yours, and yes things can be a struggle. My strategy is to focus on Wellness .... sounds easy enough? well no it requires discipline and commitment. Just start a shift in behaviour Instead of looking up something to do with being 'ill' on the web, look up something to do with being well. Don't look up Parkinsons stiffness for example look up Yoga classes, Dance classes, e mail a friend and go for a cycle or walk whatever you can manage, can't afford a massage ask someone you trust if they would have a go, run a hot scent filled bath.... and then there's cake ....
I am being extreme here! I don't mean don't find out about your condition nor am I advising you not too, but for every time you do something in your PD world perhaps an idea is to balance it with doing something to do with 'wellness'.
Being positive always makes one feel so much better if you can
get out f your poooooor me atitude and switch to lucky me.......! THERE ARE SO MANY THINGS IN THIS GGRAND OLD WORLD THAT WE ARE BLESSED WIITH..........TAKE A CHANCE .....LOOK AROUND, YOU WILL BE IN FOR A BIG SURPRIZE!! take it from me.........the original moaner and groaner and ppppoooooor me person!! B GODS BLESSINGS upon you.............ellie/TUCSON AZ]
I have been very positive about my PD and have done quite well. However. I am now at the 25 year mark and everything seems to have suddenly fallen apart. My symptoms (mainly freezing in place) have taken over and my hands are becoming increasingly difficult to use. For instance, I can't hold a pen, or a fork, and this is very distressing. My normal up-beat personality is gone, and I can't find it. Any suggestions? I'm approaching desperate.
What is this DBS operation / implanrt? Would it be something they would use on a 73-year-old woman? One thing I have noticed is that the medical profession treats everything much less aggressively as you age.l It's as if it doesn't matter any more if they can "fix" your problem or not, they just want to put a band-aid on everytrhing and send you home.......and one of my sons is a Nurse Practitioner and I norice it even wiith him. I always feel I am being chucked aside, both at home and at the doctor's office or hospital. It isn't a real obvious thing, but enough to give me a bad feeling; I'm trying so hard to be positive, but it's difficult.l Sorry, I got off the subject.
An item rather akin to a heart pacemaker is inserted into the patient around the front of the shoulder with a couple of wires / electrodes fed in to the relevant part of the brain. Electrical pulse are fed down the wires and have the effect of counteracting the wayward activity resultant from the PD. The signals from the DBS gadget have to be adjusted and re-adjusted over a period to find the optimal setting. Some people report this taking anything up to a year.
I have no idea if age would be a consideration for someone your age.
Apathy is a side effect of PD. I'm feeling it (?) at the 10 year mark. I know i have feelings but can't access them. Seek occupational therapy, any kind of exercise that is fun. Google JCC Parkinson program in NYC -- we have all stages and we all have fun.
I can truly see why that would be so distressing and it is something I don't under estimate. Please make sure you have all the options you should so you can make the best choices if you don't know what they are then be firm about getting them. Music always brings me around! What was the first record you bought?? go do a nostalgia trip! And I hear Dragon is a good voice recognition system on the PC. in the meantime put some head phones on and get someone to click this....youtube.com/watch?v=FSi-7lx...
Hi there - I think we once had a conversation on the I have Parkinson's page on Facebook (it started on with my comments on the Glasgow WPC and you almost made it to our online group at Cheltenham
Anyhow I am also at the 10+ year point and couldn't agree more with your sentiments. I can't do my weight lifting anymore due to pressure in my eyes but I do lots of other exercise - I am about to cut the lawns because it is a beautiful day here in the Peak district
and maybe chop some more logs
I am currently in a Pd choir and we are giving our first public concert in the Winter Gardens in Sheffield 13 May
Although it is a Pd group, the emphasis is on singing for pleasure (we enjoy life) and we have great fun
My group Bold Moves of the JCC PArky program in NYC performed at the Parkinson's Unity Walk last Saturday. There are pictures on Facebook. I wish I could figure out how to post them. I had a blast. We all did. Some of us can barely move, but under right circumstances we can and do!
I hear you all, and its good to know that there are so many wonderful spirits... so in the spirit of that howabout some 'wellness'
First boy I kissed :: Duncan Pryce aged 5, gave him chocolates on valentines day in the play ground, did offer me one, did he heck. I heard he became a policeman... figures
A secret I told my Dad :: That the cuckoo clock stopped working because I drank too much scrumpy and fed it peanuts!!
Something I hate :: Men over 65, balding but with a skinny ponytail
Have just seen your post and could not agree more. We have to stay positive. I try to set myself a target involving something I cannot or find difficult to do. If or when I conquer this, I feel good. I never give up and push myself as far as I am able.. If it is something that I need to do in say the garden and don't feel like doing, I make myself do it in stages a bit at a time. We are all at different stages and have different abilities, but I try to make Parkinsons live with me, not me with it. After all, it is my body, when all is said and done. I know I can't get rid of it, but I will fight it to the end. I was here first.
Keeping positive is great advice but sometimes a dark cloud seems to land right on me and I can't shake it for awhile. Usually a nap helps and I wake up feeling better. My strategy for my days is to pick a goal for the week, then work as much as I can on the little steps to accomplish the goal. An example is I want to plant my veggie garden this week. So I broke it down into steps-clear the garden of leaves, rocks, etc and get it rototilled. Then to rake it out and go purchase the plants and seeds, plan where each is going, etc. So far since Sunday it is rototilled, raked, fence up, and 1/2 planted. The rest will wait until next week, tired, need to drive 2 and 1/2 hours to my daughter's house today so she can take me to my Movement Disorder Specialist tomorrow. Will set smaller goals for the next few days. Thinking about it, setting the goals and working towards accomplishing them makes me feel useful and competent, something I lost when I stopped working. Guess I'd better go finish the dishes and pack, maybe make a list for the dr appt tomorrow or maybe I'll just go without a list for once.
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