Hi everybody - long time time no post and I hope that you are all as well as van be under the circumstances and I wish you all a beter 20008. Hi Ed, how goes the fishing? I wish you well.
Hvae been dx'x pd for 2 years and probably had it for 5 or more. Been on neupro patches for 16 months.
Had surgery for hip replacement last September and am returning to work in 2 weeks.
Observations on how my recovery has been with pd a factor.
Because of the anture of my particular type of op I had tostay off my feet as much as possible for 8 weeks post op and only gradually mobilise over the succeeding 6-8 weeks before rehab physio could begin. This is the time my pd APPEARED to worsen but with the benefit of hindsight I believe that is hasn't for the following reason. As I am still normally working full time for RSVP in England, pd on a day to day basis takes something of a back seat as there are other more pressing issues to deal with such as resopnsibility for 12000 volunteers and staff etc and this takes ones mind off the trials and tribulations that pd sometimes causes one to have. What being off work for 5 months has done is to 'allow' me to focus on pd more than I normally would have done and in particular the way in which it has affected my day to day life. Before the op my main problems were tremor, 'walking thru treacle' on particularly tiring days and difficulties using my right hand - messages just not getting thru.
Having had all this time on my hands the more subtle difficulties have taken on a greater significance but only because , i believe, I haev had the time to notice and then dwell on them. This did concern me somewhat at first bt I now have them in proportion but it has taken time. Muscle wastage has been a problem as pd does hinder ones physio particularly on energy levels when using exercise and muscle toning equipment and this why my recovery has taken longer than with a previous hip replacement prior to dx. But, all in all, recovery has been steady and positive but ym awareness off what pd has been and is doing to my body [and mind] has improved for it.
What has also happened is that I have changed neuro when my consultant left the hospital. The new guy was very thorough but surprised me when after two eyars oof 'having' pd he asked me if I would go for a series of tests he felt should have been done as part of my original dx. He was also at pains not to appear to criticise my previous neuro no question his dx. He merely felt that I should have had MRI scan, bloods and 24 hour urine sample to eliminate other conditions such as Wilson's Disease.
However well and carefully he may have explained the sitaution it did throw me somewhat and made me ask 'what if...?' questions to myself. I have hhad the tests and scan - which was an amazing experience, I enjoyed it so much I fell asleep inside for over 20 minutes - and will have the results on 15h Feb.
Has this sort of re-evaluation a couple of years down the line from dx happened to anybody else and if so I would be grateful for your thoughts and experience of the matter and also if anybody has had similar or otherwise experiences of post op recovery.
I now understand the 'stay active and mobile' adage of feisty. Inactivity is the friend of pd.
Finally can I point you to a UK based forum that is set up managed and moderated by pwp as an antidote to the bear pit atmosphere that can be the PDS forum in the UK. The forum is called PDUK [google it] and has a few of our American freinds visit and join in. It is a very busy forum of over 120 members [only started in August last year] and would welcome observation from the US side of the pond.
Sorry to go on for so long. Thanks for reading and resonding.