An interesting sort of day...
Went to Great Notley Country Park, where there are plenty of tracks in good enough state for the scooter. Unfortunately there are a couple of sandy play areas that you have to cross. From previous expeditions on foot I thought the sand was no more than an inch or two deep so I set off full of confidence. But halfway across it hit four inches, which is the scooter's ground clearance. Firmly stuck, couldn't go forwards or backwards.
Several spectators rushed to my aid and with some difficulty managed to push me out,with maximum power assistance,prompting Sue to observe that there are still good people around. Quite so,and many thanks to them.
By the time we finished at Great Notley the charge level in the batteries was well blow 50%, which meant time for their first charge.And that, according to the place we bought the scooter from, meant taking the batteries out and putting them into the separate docking station. All very well until we found that the crescent-shaped bar clamped around the seat tube (which is the bit the hoist attaches to) didn't give enough room to get the batteries out.And we can't move that bar because the piece clamping it to the seat tube uses some unusual fixings which need a specialist tool that I haven't got. That isn't very clear but some photos and a video might help:
I posted this earlier, possibly in the wrong place. I hope you and anyone looking in can see this...
ReplyDeleteI am currently 72 years old and I was first diagnosed about 19 years ago by my gp. My memory is vague on this because of what has happened over the years. My hematologist in Vancouver put me on a regimen to preserve my bones and delay my chemo/stem cell treatment. Then it became clear one day due to extreme weakness that my time had come. So full court press on blood boosters, Dex, the full on nuclear bomb of chemo. Usual hair loss, weight loss, weakness...pretty typical. Had a year respite because of this. Gathered my strength. Doc then put me on the hated Dexamethasone. My wife followed a blog by an American woman in Venice called Margaret. She followed a regimen of high dosage Circumin, monitored her blood and was living a close to normal life. So after a year of Dex and all the dreaded weaknesses and accompanying grief, in discussion with my doctor, I said f*ck it to Dex and went on Margaret's Circumin regimen. Best thing I ever did. I now live a pretty normal life. I hike in the mountains. I travel. I drink alcohol. I am not suggesting anyone ditch their doctor's advice, but a discussion of this might help. I believe their is an English study of Circumin in which a MM patient was treated with it as a Hail Mary and if saved her life. I saw the study years ago, but you would have to look for it. But, for me, living with Dex was making my life a living hell. So it was an easy decision to damn the torpedoes and move on. I am more than willing to share more of my story if you are interested. I know there are no magic bullets and many kinds of Myeloma and no one size fits all. But if my experience can help, please just reach out. BTW, I think I got MM from high dose radiation.
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Thanks for the interesting comment. More coming later.
ReplyDeleteFirst of all, delighted that you're doing so well. Long may it last! My only direct experience of curcumin is in a daily turmeric capsule that I've taken for years. It certainly hasn't been a miracle cure for me so far - anyway I've been told to stay off it in the run-up to major surgery next week.
ReplyDeleteWe are, as you say, all different, and there are such things as spontaneous remissions (rare!) which can coincide with a treatment change that can get undeserved credit. Only proper double-blind trials can really tell what's what. I've done a bit of reading and the verdict so far seems to be "not proven" - and if it were better than that of course the big drug companies would be all over it - either to jump on the bandwagon or to avoid losing sales of their established drugs to curcumin... "Follow the money" is usually good advice!
May I ask what dose you took and for how long?