Hi, thank you for accepting me on your site
i am 43 years old and my best friend has Parkinson's
so I came on here to learn more and hopefully be able to understand more so I can support my friend
she is progressively getting worse and her meds are always being altered
I witnessed for the first time this week my friend having a full body cramp that lasted nearly 3 hours, it was pretty scary and I felt helpless.
now I see what she faces everyday and I can see her gradually giving up
i would like to hopefully learn from the forums ways I can help x
Hi and welcome to the forum,
I hope you find support to enable you to continue to be such a wonderful friend. I understand it is tough for those people who remain loyal by our sides , as Parkinson's is progressive.
My personal view, Parkinson's is a complex illness difficult to get to grips with, we all have a different set of symptoms, that can vary by the hour, medication tends to be tailored to individual needs.
I am really appreciative of friends who ask me what I would like them to do for me and when. This may be the best way for you to help/support your friend, as she will be the only one who truly knows how she feels and what she really needs.
Maybe encourage your friend to join this forum?
Your friend has dystonia, painful cramps , whilst I have cramping in my hands, feet and sometimes in my lower back I feel for your friend having a full body cramp for 3 hours, as you witnessed it is really painful and distressing for both of you.
There is an incredible woman on this forum who has struggled with dystonia and fought against it, having dbs ( deep brain stimulation).
Her username on the forum is bettyblue, she is inspirational. You can search on the forum to read her posts, she is a very supportive member of this forum.
Take Care and Best Wishes x
my friend goes into cramp after eating and developed this after a hysterectomy
she also had a bunion removed and had her toes broke for this due to cramps the bones can not heal
she has spondylitis and pars lateral
thank you for your advice I will look up the member you suggested, I think my friend is worried about DBS , it seems every time they change her meds she develops another symptom.
she is strong minded but I think now it is breaking her spirit to keep fighting
I had the DBS op recently and I was petrified as I’d never had an op before. I can say that the actual op where you are awake is painless and the drilling bit is weird. There are always risks even with the most minor ops but the risks in this particular op are minimal and to me & are far out weighed by the benefits.I can now get about with confidence and I hardly switch off and freeze up so I don’t have to keep cancelling appointments & meeting up with friends, also my medication has been halved & I’m not moving about like an imbecile with arms flailing about all over the place. I won’t lie that there wasn’t any pain at all as when the surgeon fitted the frame to my skull it was bloody painful until the local anesthetic kicked in but that was because there had been an emergency put in front of me & there was a slot I had to fill or my op might of been cancelled.so there my be no pain for someone else? All in all I personally think if offered the chance of getting your life back or staying the way you are I’d totally recommend DBS as I’m so much more confident plus my sleeping has improved 10 fold & dystonia is now minimal.
Hi im Keith
You are a true true friend , the courage you show to her is a gift only certain people obtain in this life , it wont ease or cure her PD , but her seeing you stand by her helps her in a way no doctors pills can and let her realise this isnt her fault
Im not at the cramps stage yet but ive had my share of falls some bad ones
Believe it or not i have lost who i thought were friends / mates when i told them , but my loyal friends stand by me , so the so call friends i lost i realise i dont need
Your biggest gift and help to your friend is the support you show and in all fairness thats all you can really do but you have no idea how much it means