Advice please!


#1

Hi to all LadyM here,
I am convinced that my husband has Parkinson’s although still not officially confirmed , this is after two years of trying to get the diagnosis! His decline recently has been rapid , and now has carers ( as I myself) has issues and disability) he has been using a frame for assistance since being discharged from hospital 5 weeks ago! But this week has had occurrences of ‘frezing’ Says legs don’t works and he is struggling to move! I don’t know what to do! Terrified he will fall , maybelline onto the frame etc. Any advice for over the weekend will be gratefully received. I shall call GP Monday.
Much more info and lots to tell at a later date but if anyone has any advice I would be so grateful! Many thanks.


#2

Hi @LadyM,

I’m really sorry to hear that you and your husband are going through this distressing experience. I’m sure other members of the forum will be able to share their stories and give you some advice, but in the meantime, I wanted to let you know that we have a section about freezing that you may find useful. You can find some practical information and tecnhiques to help your husband with these freezing episodes here. There are also some great tips to help with walking better on our section about falls that could be useful too.

I hope the GP can see him on Monday and reassure you both, but please let us know how it goes.

Best wishes,
Mara
Moderation team


#3

Good morning LadyM, Most sufferers on this site will be only too aware of the sensation of your feet being stuck to the floor. I was outside last year cooking food on a barbecue for the family. I tried to adjust my footing to the right and fell head first down our concrete steps. Whether it is instinct or not I seem to roll my body and tuck my head in. I got away with some nasty scrapes on legs and arms. It is just another symptom we have to take in or stride I am afraid.
Why oh why has it taken so long to get a diagnosis ? When I was referred nearly 11 years ago by my gp I was then seen quite quickly by the consultant and within 10 minutes he told me I had pd. I luckily do not need a stick , if I had to use one when I am walking my miniature schnauzer I would end up in a right tangle. M y pd nurse who is brilliant by the way says use it or lose it. Keep your husband as mobile as possible , believe me it makes a hell of a difference walking the hound 3 times a day.


#4

LadyM I don’t know in the UK if they do a sinemet challenge. Perhaps your GP can order a starter dose for a dopamine replacement. I hated being in limbo. If it is a disease that is caused by low dopamine your husband will see a lessening of his motor symptoms. It my help to stress that your husband has a high likelihood of falling to your GP.
Sometimes the squeakiest wheel gets the needed oil. Keep up the pressure it has been two years.

God bless you. YOU ARE A WONDERFUL WIFE YOUR HUSBAND IS FORTUNATE .


#5

Thank you so much, things ongoing, abetted appearing bad to worse, but we soldier on!
He has infection at the moment, so more antibiotics, but Gp has also chased the physio!!
Fingers crossed.
Thank you once again.
I will keep posting!!!


#6

Thank you so much, your kindness means a lot!!
Gp is chasing the community physio , so fingers crossed.
He has an infection at the moment, so that appears to hinder everything!
But another day tomorrow , we take a day at a time.
Thank you again.
Sending warm thoughts and thanks!


#7

LadyM Sounds like your medical team is on top of this. My next sentence is not meant to alarm you.
I was a machinist (CNC). Where the machining equipment used chemicals mixed with water. The employer to save money did not change the fluids as required. With that occupation it was common to get skin cuts to the hands.(who knows where I came in contact with such a bug)

) I was lucky my wife was an RN (nurse). One day I woke up and my left hand was extremely swollen. Upon looking at my hand my wife said were going to the hospital. The doctors there gave me a shot and a prescription of antibiotics. The next day it was no better. My wife took one look back to the ER.
This time they made me stay. The doctors tried 8 different antibiotics which included vancomiacine. Non-worked. The swelling continued to travel up my left arm. My wife Told me later that amputation was considered.
I had a staph resistant infection. A infectious disease doctor was called in.(He also assisted in the EBola case Omaha in known for some time back)A pic line was put in place and a experiment antibiotic was used daily for 6 weeks. IT WORKED.
I think your doctors IMO are on track to take care of the infection first. I can tell you from my own experience that I hardly remember 1 week of my life because of the infection. (fever,and dilirium) Bad spelling sorry.
Sure sounds to me that again your husbands care is in great hands.
I know AT times life can frustrate. We have to trust in a higher power HE WATCHES OVER US. And He is listening to your concerns. God bless