Hey there, this is my first post. I may not make other posts. Im hoping to use this site to learn from as its the best Ive found yet.
Heres what has brought me here. A year ago a met a guy who has PD. My first experience with PD. We have been seeing eachother over this time, and I was well aware of his condition from the start. He was diagnosed 12 years ago, but his condition has been a very slow form indeed. I read every definition on PD I could find online, surfed MJ Fox site and read his bio etc... Purchased a book about PD and basically tried to understand and learn about what he was going through. about 2 months ago he let me see the ugly side ( his words) he always tried to hide. The morning side when his meds hadnt kicked in. I reacted as I expected I would, not bothered, and joked about how he just didnt want me to see his pillow hair. Since then he has opened up to me, and started to talk about things and share with me. It then occurred to me that he had no one else to do this with. Once he started to share his feelings and emotions on things I saw a whole new side that I never knew existed. I also realised I knew nothing about PD, even after all I had read... I hadnt yet spoken to anybody else, all my knowledge was garnered from books and websites. I then contacted the local Parkinsons Group and had alot of info sent to me, and found a support group in my area that I will be going to so I can meet other people who either have PD or work with people with PD. So I can grasp more strands of information. This is what got me learning about PD. What brought me to this site???
Well last night I met up with a friend, we havent known eachother very long, but long enough that he felt comfortable to tell me he had PD. So I started asking him about it, questions that showed I understood a little about it. He instantly relaxed and we talked. He showed me a sad, frightened man, who was blocking out his loved ones as he has a sense of burden... He was diagnosed 4 yrs ago and told me he is still in denial. When he had to finish work he set goals of things to achieve, he has done none of them. He is also blocking out his partner of 20 yrs and his 2 kids from the turmoil he is dealing with. Hes 54 and is also in the early stages of Dementia.
Why am I at this site, well we had such a good night talking, it went for hours, he enjoyed it immensley that he wishes to do it again this Sat. So I agreed on the condition he starts one of his goals he set when he left work. His partner will inform me when he starts it and does so much of the work I set for him to finish. What I need to know from other people with PD is how can I motivate him to embrace the quality of the time he has... he seems content to let it slip by. I tried to use some examples from MJ Fox's book, but he didnt bite. I also even suggested by not doing anything is living like youre beat. I was really at a loss for examples to try to motivate him to bite back and take control of what he has and not try to control what he feels hes losing.
Can anyone suggest ways I can motivate him. ? I never knew there were PD chat sites till I read the MJ Fox book.
I hope my post makes some sense to who reads it. Its now 1.45am, and I shouldve been in bed hours ago . Any suggestions or advice will be taken on board. Also any suggestions for further reading? please send.
Many thanks in advance.
LLW
Welcome to healing well.We are all here to learn and gather support from each other.You might suggest a support group ,such as this one for your friend.Motivation is a real problem when you have PD,and no amount of discussion with your friend will change that.It is often a symptom of Pd as a direct result of the disease or medications.I was dx with PD in 98 and a major problem I have is total lack of motivation and procrastination.You see this in a different perspective,and have a hard time understanding why he can't achieve goals.This is a saddness of PD those that don't have it usually don't understand it,and try and impose their values on those with PD.You can either accept this condition or move on I don't think cnange is in the cards.This is not a criticsm,and I believe you are a caring individual.Wish you the best.Ed
Ed
Welcome to healing well.We are all here to learn and gather support from each other.You might suggest a support group ,such as this one for your friend.Motivation is a real problem when you have PD,and no amount of discussion with your friend will change that.It is often a symptom of Pd as a direct result of the disease or medications.I was dx with PD in 98 and a major problem I have is total lack of motivation and procrastination.You see this in a different perspective,and have a hard time understanding why he can't achieve goals.This is a saddness of PD those that don't have it usually don't understand it,and try and impose their values on those with PD.You can either accept this condition or move on I don't think cnange is in the cards.This is not a criticsm,and I believe you are a caring individual.Wish you the best.Ed
Ed
LLW,
Two excellent books Liberman-parkinson's Disease,and Arque The art of moving.Be sure and check healing Well'sresources if you haven't already.Ed
Ed
Two excellent books Liberman-parkinson's Disease,and Arque The art of moving.Be sure and check healing Well'sresources if you haven't already.Ed
Ed
Hi Ed,
Thanks for the insights. I know what youre saying, but in a way I think if he can just start on one of his goals he will keep it up. The fact he hasnt started to do it depresses him. So I feel he does wish to get in and keep moving. I wont try to lay any heavy vibes or guilts on him if he doesnt, I can hear what youre saying.
I will look up those books youve mentioned, but I think first off this site offers alot of ansewers for me , and I will start slowly working my way through it.
Ed, with leg and foot cramps, Ive read that massage can sometimes alleviate the symptoms ( sometimes the cramps are due to the meds, i know) is there any particular masssage that can help ease this. Im sorry if my questions seem immature, but Im really out of my depth here and trying to learn to swim as I go.
LLW
Thanks for the insights. I know what youre saying, but in a way I think if he can just start on one of his goals he will keep it up. The fact he hasnt started to do it depresses him. So I feel he does wish to get in and keep moving. I wont try to lay any heavy vibes or guilts on him if he doesnt, I can hear what youre saying.
I will look up those books youve mentioned, but I think first off this site offers alot of ansewers for me , and I will start slowly working my way through it.
Ed, with leg and foot cramps, Ive read that massage can sometimes alleviate the symptoms ( sometimes the cramps are due to the meds, i know) is there any particular masssage that can help ease this. Im sorry if my questions seem immature, but Im really out of my depth here and trying to learn to swim as I go.
LLW
LLw,
Foods with Calcium and potassium like orange juice and Bannanas help me with cramps .Some people use quinine but it is definitely not recommended with mirapex.The Neurologist could help you here.I use an electric foot massager.seems to help but I still get them.Ed
Ed
Foods with Calcium and potassium like orange juice and Bannanas help me with cramps .Some people use quinine but it is definitely not recommended with mirapex.The Neurologist could help you here.I use an electric foot massager.seems to help but I still get them.Ed
Ed
hey Ed
Thanks for the fruit tip, will try it. I didnt know about quinine etc.. I have yet to meet my friend neurologist etc, as I said hes only just started to open up to me and talk, so I have to go really slowly with him. But Im a patient person.
Ive ordered that book off the net, the Art of moving. I will read it then give it to my friend to read, He doesnt do any kind of exercises for muscles, but is very active in daily life. But recently has mentioned muscle weakness and lack of stamina being more noticeable. I have suggested we find certain exercises that may help him, and give them a try...
I appreciate your time Ed. Thanks alot for the pointers.
L.
Thanks for the fruit tip, will try it. I didnt know about quinine etc.. I have yet to meet my friend neurologist etc, as I said hes only just started to open up to me and talk, so I have to go really slowly with him. But Im a patient person.
Ive ordered that book off the net, the Art of moving. I will read it then give it to my friend to read, He doesnt do any kind of exercises for muscles, but is very active in daily life. But recently has mentioned muscle weakness and lack of stamina being more noticeable. I have suggested we find certain exercises that may help him, and give them a try...
I appreciate your time Ed. Thanks alot for the pointers.
L.