Hello, I am looking for fellow sufferers to talk to


#1

Hi I was diagnosed with Parkinson's in 1997 and had had it for some time before being diagnosed. I was a nurse for many years and eventually took Ill health retirement in 2003. My most resent concern is getting out and about as I gave up my driving license as I felt I was no longer safe. 

I am a member of Parkinsons groups but this is my first time on an online group. I'd like to hear about other people's experiences with Parkinsons to compare and to aid my knowledge.


#2
Hi squash, I was dx three years ago at stage 2 mine is quite aggressive now at Stage 3.5 and taking in total 33 tablets a day. I also get Distonia which is aggressive as well hoping to go for DBS this year. For the Distonia I use the Apo-go injections and i loath it with a vengance. I am only 50 the thought I could have to deal with this disease for another 40 odd years really does not please me in any way shape or form. Anyway enough about me how are you doing where was you nursing from and how much experience did you have with regard to PD prior to your dx. We are all on here as we can be the voices of knowledge more so than the medical professionals as we have it or care for someone who does so and live with it everyday. There is a free online course through future learn called GOOD BRAIN BAD BRAIN PARKINSONS I took it and score 84% really chuffed with that considering I was not a good little school girl who soaked it all up. If you need support just ask that is why we are here and one off us will get back to you. Take care and hope to speak to you soon BB xx

#3

Hello BB, thank you for replying it's lovely to hear from you. I travelled around the county working in orthopaedic wards so had only dealt with Parkinsons on general wards. I'm sorry to hear things have progressed so quickly for you, what medication are you on? I am on stelevo and madopar. I used to take mirapexin for many years but had to stop due to hallucinations. I have also started a low dose of quetiapine to help get rid of the hallucinations. I use a special stick with a laser beam to help with the freezing. I also have distonia.

I am not married and have no children. I have moved to Essex to be nearer to my family. 

My physio says when I'm good I'm very good, when I'm bad I'm awful :)

regards Squash x


#4

Your laser stick sounds interesting...how does it work?

 


#5

http://www.livingmadeeasy.org.uk/walking%20and%20standing/walking-sticks-with-non_standard-features-p/laser-cane-0102579-1973-information.htm  

Hello Keld I have posted above a link for the lazor stick. I find it very helpful


#6

The laser stick looks really good.....My Mum used to 'freeze' and counted to 3 and said Go and then would generally 'unfreeze.'

She read somewhere other ideas to get going - throwing torn paper on the ground in front to step over - which sounded like you'd get a penalty for littering! and another suggestion from a man who had tied a ruler to the bottom of his walking stick for him to step over.....sounded positively dangerous!!!!

Your stick sounds like a much better solution to the problem.....!!!

 :)


#7

Hi. I've been diagnosed for 11 years and am lucky my pill count is sill only around 18 a day as the dosage levels and controlled release types were introduced.

My specialist summed me and my attitude up in his recent letter to my GP.  It referred to me as being one to live life full on and aside from my intention (today) to abseil the Spinnaker Tower have shown No Other signs of increased compulsive behaviour.

I'm still laughing at that summation of my attitude.  It's what keeps me going and looking forward to making the most of the time I have.

Always look on the bright side of life (of Brian not Brain).

Ken


#8

I wrote on another post that my only takes 4 sinemet a day. But she is so weak and weary is there anything she take to help her with this?
     

                                                  Billy


#9

Hi Billywhizz,

I just wanted to say that our Helpline team would be more than happy to chat to you both. They can offer medical advice and information that may help with this issue. If you would like to, please call: 0808 800 0303 on weekdays from 9am-7pm and on Saturday from 10am-2pm.

Take care,

Edwina

Moderation Team

 


#10

Kendo,

Hope your abseil went well today...I'll look out for the photo's!  

I am doing the abseil off Guildord Cathedral in June - but yours was a bit of a longer journey than I'll be doing!!

Brave!


#11

kendo never a truer word has been spoken no matter what this condition does to us we all need a bad attitude towards pd.

much respect bb.