I sit here amongst an amalgamation of various papers, scribbles, notes barely readable. All that’s left of my years of methodical bookeeping, my well kept neat records of a forgotten era. I cannot seem to function in that mindset any longer, instead days start as they end... little bundles of my endeavours everywhere unaccomplished and incomplete.
My right hand has locked into its own agenda and my left leg continues to go round and round simultaneously, the inner muscles twisting and turning until I feel as if they will soon snap.
My medication, that awful time consuming affliction is due and my body cringes at the thought of having once again to release those multi coloured tablets from their sealed confines , not one, two, three but four ……each doing what………… I don’t know but yet I swallow them.
I feel no immediate difference but after a while the twisting stops, my hand unlocks and stiffly stretches and I am able to walk without dragging my legs, I can enjoy momentarily working in the garden, the sun on my face the peace and tranquillity of being on my own. I am myself again if only for a short while.
I am tired now. I sit and sleep takes me unexpectedly. Awakening then in the same position I stand up slowly, gently loosening the re-stiffened joints as I arise. I can do no more today yet I found great contentment in those special moments at one with myself and nature.
I drag my feet indoors my left ankle turns outwards and it pains me as if it were twisted. I find it hard to walk….but wait …now its fine. What message is my brain relaying to my unsuspecting body and where next will be its victim.
The day moves on and night draws in but no sleep passes my way, instead my misinformed body is convinced it’s daytime and I stay up through the night moving from one task to another. My only consolation being from past experience that I will sleep the following evening.
And then in the morning when I awake, stiffly arising from the bed, slowly dragging myself to meet the needs of the day, I will begin to strip those multicoloured tablets from their confines and wait….and wait …..until they give the green light to go and I move forward…….
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marmaduke123
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That was so moving Marmaduke123 - you write for so many of
us - thank you.
I am still, after 11 years with the beast, exercising - even boxing training (in my 70th year I must be mad) - but am finding that it is getting harder.. I will not give in, of course, but I won't (can't?) take any more drugs and I am already at maximum effort so, I am now taking Coconut Oil (day 3 today).
It's not a journey of hope I am embarking on - it's one of positive optimism. If Placebos can work, why not CO for me? I still have Nicotine Patches in my arsenal anyway!!
froggatt55, Can you tell me what the maximum of drugs you take? I am finding that the amount I take does not last and I am on the "off time" more than the "on time". I do not want to take more. I am seeing my neurologist next week and I KNOW he will tell me to take more levodopa/carbidopa! What happens next if these drugs don't work any longer? Is the CO working for you? Are there any other alternatives? Thanks.
Hi Puddlejumper - remember that although I have 11 years of experience and knowledge of the beast, I am still a lay PwP. That said, I am happy to give you my views on medication I take:
2 tabs of Sinemet (25/100) 4 times daily. I don't reckon to taking any more because of the risk of Dyskinesia - which is controlled (as I and many other PWP believe) by
1 Capsule of 100MG Amantadine twice daily (I know of PwP taking 3 capsules daily but my Neurologist advised against me taking a third because of potential problems with Sleep - which I can understand because of the boost each capsule gives me)
1Tab 1MG Azilect once daily - I was recommended to add this to my cocktail about 6 to 7 years ago and it literally changed my life - it made everything work!
2 Tabs of Requip XL 8MG - 16 MG in total once per day. I have been varying the timing of these as I get a dip in the early evening but get a second wind at around 23.00 so I am aiming to take them around 15.00 to see if that helps. I wouldn't wish to take more of the Requip
I don't usually start taking my drugs until between 09.00 and 10.00 depending on the plans for the day (I actually start at 08.45 on a Monday because of Boxing training at 09.30) because I always waken "On" albeit not too fast!!
I was prescribed Madopar Dispersible (50/12.5) to take 1 or 2 as and when by the Neurologist to see if they would help during my evening "dip" but I haven't started with them - I am trying varying the timing of the Requip first
I guess that in prescribing the Madopar dispersible, the Neurologist reckons I can tolerate more Levodopa but I would prefer not to - I would rather fade for a bit in the evening than risk dyskinesia
I always say to PwP "Do you exercise as much as you are able because exercise has seen me this far?" This and a good sleep are the best alternatives in my book
I really don't know what I would do if the drugs started to lose their efficacy. I wonder if Stalevo is an option? I am watching the DBNF trials with interest.
I intend to keep exercising and trying out the Coconut Oil. I have just started so I can't say whether it works for me but I will post immediately if it helps! I'm giving it a 6 months trial
Hi froggatt55, Thank you very much for your detailed reply and taking the time to do this. I really appreciate it.
I am, in fact, on Stalevo now, but I am finding that I am having unusual side effects. I will discuss these with my neurologist as I am also keeping a daily log of my symptoms. At the moment I am doing a lot of research on the PD drugs that are available here in Canada.
As you mentioned, I also exercise as I understand that exercise helps to use the dopamine more efficiently and improves your symptoms.
Marmaduke123, Yes, you do write for so many of us, who are not able to express our thoughts as you have. Thank you from the bottom of my heart. Wonderfully done!
Got that right! I have to ask for help for the stupidest tasks--otherwise it takes like what seems all day! Opening containers. Filing bills. TAXES?? Help!!!
everyone....thankyou so much for all the lovely comments they're very much appreciated. its the first time ive shown anyone outside my family so i was a bit apprehensive. im glad you enjoyed them...
are there any writing groups near you? It might give you confidence to continue. The local Council on Aging has a writing group and they can be a help. Writers often need other writers and can be supportive.
Thankyou so much quirky me for your lovely comments and encouragement. I will take your advice on board as when I'm sitting down in front of my computer writing I'm at such peace with myself...
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