Hi all at HU! Its been a while...PD and dystonia of the foot still causing lots of trouble. In addition to this at the end of june i had a very bad fall ( bramble attack my ankle). I fell on my face hitting also my upper lip with the gate( will need dental work too) and breaking my two humerous bones. Bit of a nightmare that landed me in Galway Hospital ( a surreal experience almost equal to be in a trolley for 36 hours in a busy market street). Advocating for myself to take my Madopar on time and avoid the added agony of dystonia to two broken shoulders every 3 and a half hours with whichever nurse was trying to avoid eye contact was a Greek tragedy. In addition as i live alone in rural Ireland i was sent for respite to a nursing home with people with alzeimers and one very advanced PD client. It didnt end there. Got covid in hospital so, had to keep advocating for my meds while in isolation. Most staff were angels but not used to lucid patients aware of their needs. Some, two or three staff though, not such angels and with very sensitive egos if i saw that how they were handling me was going to be pure agony. They became pubitive and decided to delay my meds for 45 min..My Pd symptoms multiplied. Pain, stress, isolation and lack of movement are not our friends and sometimes i had to wait a long time to be taken out of bed. I wont mention lack of showers toilet etc. As i said most staff were lovely. Problem was when i was a couple of days at the mercy of the not so lovely ones. The minute i could get out of bed without help i was walking all over the home and tried every strategy to wash feed and all the rest on my own. I have to thank Chi kung movement and Feldenkrais as well as prayer, intense prayer and meditation for healing fast and regaining enough mobility to go home. While there, i brought two members of the Pd choir where i sing and sang at mass and prayers. They too were angels. And i made friends with a 90 yr old lady that was recovering from an accident. She too was beautiful.Its lonely here at home and the experience has left me sore and with motivation to do every possible thing to never end there. But we never know. Its not in my hands but in the hands of the creator. The experience has been humbling and scary to say the least. Im still very afraid of my beloved garden...i move cautiously and take my B1, d3k2, C, and many other supplements without having to convince anyone that its what i need to do. 6 years on this path. I was unmotivated for personal reasons now no more options than kick my b** and move...move gently, walk, dance, pray and keep trusting that amid the nasties of this world there may be some angels. And a bit of assertiveness while i have a voice helps. The back of my knee still inflammed from the hospital days but soon i hope will be ok. With a bit of help. Forgive the long post. I needed to keep sharing. Thanks for being there dear HU parkies. Love from Ireland. Chelo
Long time everyone...two broken shoulders... - Cure Parkinson's
Long time everyone...two broken shoulders and a series of other disasters
What a nightmare! I'm so glad you're home and able to fend for yourself once again. Hope you heal quickly and thoroughly and welcome back. 💐
You're very brave and inspiring, a big warm welcome back hug.
wow. What a story. Amazing. Thank God you seem to be okay now? The fight I had in hospital trying to get my medication was a fight that I won’t forget in a hurry. But you sound like a fighter Chelo. Good for you!
Well done for coming through all that, and still retaining a sense of determination, and humour. Your strength is inspiring . ☘️
This has been more than a tough journey for you. I hope your recovery continues at a good clip. I don't know if the following would be helpful for you, but it might help in your continued recovery :
healthunlocked.com/cure-par...
Best wishes!
Art
Thank you Art. Yes, it sounds relevant. I may try to make it as i alteady take melatonin...
If you decide to test it, please let us know if it is helpful for you. No amount of oral melatonin could offer the same pain relief as melatonin lotion (ML) which allows for much higher local tissue levels of melatonin in the area of pain. ML also lasts in the body much longer than oral melatonin which is essentially done in about 5 hours whereas the lotion can stick around for about 24 hours. Some friends have reported that if applied in the late afternoon or early evening it helps them sleep, but that has not been my experience.
Art
I cannot avail of melatonin powder in ireland. My melatonin,( Bronson 10mg) can be ground i suppose and added to vodka and a ph neutral cream...i do a lot of potions with my herbs so im used to experiment. Ill make a small dose first and try with my very inflammed knee...i take 30 mg before bed. I sleep relatively ok. As my arms are healing much better thank God. Just wake up once and go back to sleep. I will let you know how it goes. Thanks Art!
Here is a quote from within the melatonin lotion thread that may interest you :
If you are in the UK, I suggested a UK supplier of bulk melatonin to a forum member and they said they
were able to order the powder from them with reasonably quick shipping and they said it worked for 4 different issues once they made the lotion. Here is the link :
rawpowders.co.uk/melatonin-...
It took quite awhile to load, but it does load.
Art
Have you had botox injection for your foot dystonia?
Hi. No, i was afraid it would numb my foot and affect my walk. Have you had it? Any info?
Only read about that it can be used
I've had it twice. Not sure if Id recommend it or not. It does not numb the foot or prevent pain, but rather it lessens the strength of toe spasms that cause toe curling. Insurance will only cover it every three months so it wears off after one month. it helps with walking a bit and pain.
All the very best for your recovery 🙏🙏🙏
Hellish nightmare that!!! But look at you! You persevered, you came out the other side with stronger intent and motivation. You have seen the inner workings of the system and know how to navigate them. Well done, you, Just heal now, yes, in your garden. (Damn brambles).
I'm happy to hear you have overcome your significant trials! Keep pushing every day to stay alert and active, and thanks for sharing!
May the Lord be with you. Great story for Dopamine Club. Thanks for sharing!
What a horrid experience for you to have to endure. I'm glad you're back at home and on the mend. Bramble is evil stuff!
PS: You don't mention offering it all up for the good of souls and in reparation of sins. I do that often and believe it helps a lot. St Teresa and Terese suffered a lot and begged God for more. Flip old Satan's tricks and defeat evil! That makes every new pain a great gift for prayer warriors!
Oh i did...sometimes...
So sorry, Chelo! Glad you're back home and recovering.
sounds hellish glad to hear your safely back
I guess there's nothing humerus about broken two humerouses. Humerii? And nothing funny about being at the mercy of uncaring nurses. I had a little of that when I was hospitalized and needed to use the toilet. I was told to call the nurse if I needed to. Ultimately I did and she came within seconds of me 'losing my water'. As I'm emptying my bladder she glared at me the whole time. I worry about prostate cancer more than anything else and worry that I won't find anything humerus about it when it happens to me.
That returned my sense of humerous, mate. Thanks 😂
Chelo.............I Feel awful you were alone and had to deal with the nasty ones on your own sans family or a good friend. They hate their jobs, should not be there and take it out on the ones they should be helping. Glad you are home, go slowly and watch when you move, please. What doesn't kill you makes you stronger!
That was truly tough. Though my neighbour( ex) visited and brought healthy food, hes not an advocate. Thank God for all my reading in HU trough the years. The information gave me strenght.
Your journey is not over yet, but you are in high spirits. Wishing you all the best. Mary
Bless you! What trials & you've persevered🙏 & come out fighting 💜! Inspiration to us‼️
dystonia question
Dystonia in Abdominal Muscles
PD warrior in the UK
