PD UPDATE: KEEP ON ROWING, BUT IN THE RIGHT DIRECTION

Sorry to say my condition is still extremely unpleasant. It is vicious, devious and manipulative. Unfortunately at the moment I seem to be going backwards not forwards especially with my moving around the house. I'm doing far too much tottering and wobbling brought on by festinating, freezing and having initiation difficulties. I use my rollator all the time downstairs but it has been taking me a long time, sometimes as long as 10 minutes, to totter from the kitchen or cloakroom to the lounge.

As well as being hugely debilitating my moving around can be utterly exhausting physically and mentally. This is because I have to think about virtually every move and subconsciously I am anxious about falling.

However I can record a few successes, the main one being that I can now stand up at night to relieve myself. It is a wobbly process but most of the time my waste water ends up in the nearby receptacle I keep for this purpose. And the number of “spillages” when I can’t get out of bed in time seems to be reducing.

Nevertheless it is extremely annoying and depressing that I cannot do some of the things I was doing a few months ago. I began to notice a decline before the heat waves we have had so I don't think they were the cause of the problem. I was using my indoor rollator and my outdoor rollator quite confidently, the latter  to go up and down the cul-de-sac outside.  I was driving which meant Sylvia and myself were able to have little outings in the local area. Why and how the decline began I don’t know, but one clear sign of it has been my inability to walk properly across the landing to the bathroom and back.

So the main purpose of this short thought is a request for help. If there is anyone out there who can suggest how I can put one foot in front of the other rather better than I do at the moment to enable me at least to walk properly across the landing,           please get in touch.

 I don't mind whether you're a neurologist, care of the elderly specialist, GP, or anyone at all who has had experience of Parkinson’s  if you are able to suggest something that works this would be great and very much appreciated. It could be to do with my medication, physiotherapy, neurophysiotherapy, psychology or it could be just plain common sense.

I hope to write some longer thoughts in the fullness of time but thank you for reading this and please share it as much as you can in order to raise awareness of this disabling and nasty condition.

NOTE: The medication prescribed by my consultant is: Carbidopa/Levedopa 25mg/100mg, 2 tablets 4 times a day. As I was rather concerned that this was considerably more than the Co-beneldopa (Madopar) I had been on: 50/12.5 , 3 tablets 3 times a day, total, 450mg, plus night-time Sinemet, and  I had read about the American FDA's (Federal Drug Administration) warning about Carbidopa Levedopa I was reluctant to change. After considerable , unnecessary difficulties I managed to return to the Madopar.

My aim is to try to return to where I was before I caught Covid, toppled over my settee and wasn't able to move. (November 2023) This put me in hospital for a month where I managed with the support of a tremendous team of healthcare workers to recover from being at more or less Stage 5 PD to where I am now - about mid stage. Nor could I have made such a recovery without Sylvia's love and  care when she came over to look after me twice, the second occasion being two years go when I had another topple and sustained a compression fracture; a broken back which was excruciatingly painful and kept me bedbound for a week, bedroom bound for about a month and housebound for three months.

I'm now living on my own again and am extremely grateful to Abbie and Fay for the excellent work they do to assist me and to Yvonne my neighbour for seeing to the bins and recycling each week.

BUT AM  I RIGHT OR WRONG?

ADVISE ME, PLEASE, YOU NEUROLOGISTS OUT THERE. AM I RIGHT OR WRONG TO REVERT TO MY ORIGINAL MEDICATION?

IS IT THE CORRECT MEDICATION FOR ME?  IS IT THE CORRECT DOSAGE OR TOO MUCH OR TOO LITTLE?

PLUS AM I RIGHT OR  WRONG TO HOPE THAT NEUROPLASTICITY AND CREATING NEW PATHWAYS WILL KEEP THE PD AT BAY AS MUCH AS MEDICATION?