Awareness of Parkinsons' sufferers implications to surgeries and their recovery


#1

This is the first time I feel ready to write about this. I lost my beautiful and loving mum on 15th June 2015. She had been suffering, but coping brilliantly and independently, with Parkinson's for about 18 years. My mother was overweight (size 22). Largely due to binging on naughty treats, and inactivity because of the disease.

Looking back I realise she had some degree of depression given the way she was living. Although she never complained and insisted she loved the mess (we would get scolded if we cleared up too much as she was fiercely independent). In January 2014 mum was hospitalised with pneumonia. She also developed sepsis and influenza b. It was really touch and go and was on a ventilator on and off for 2 weeks. A very scary and horrendous time for my mum and for me and my two brothers. However she bounced back and amazed everyone with her recovery.

We weren't so lucky in 2015.... The year started with us losing our Nanny (my mums mum) in January 2015. She was 91, and we were happy for her. It was peaceful and it gave my mum some relief as Nanny was really starting to suffer with dementia. Shortly after that Mum had some unusual post menopausal bleeding. She quickly got it looked at and it was decided that there were some cancerous cells and a hysterectomy was advised.

Early May, shortly after my Mums 64th Birthday,Mum had the operation. She stayed in hospital for maybe 4 days. We had a slight hiccup during one night where mum said she was rushed for a ct scan at 1am because they weren't happy with her oxygen levels. The scan revealed some clotting so mum was prescribed some thinners (not unusual after long surgeries). It is important to note that following the operation, Mum was given some antibiotics.  Mum complained that the antibiotics hugely affected her parkinsons medication which made her even more uncomfortable and unable to operate properly, due to the effect it had on her usual medications. Mum was on the 5th of the 6th week before she was told she would be able to start driving, become a little more active. I spoke to my mum on the morning of 15th June when she said she was feeling a little breathless but she assured me it was usual to feel like that after her Parkinson's meds and was quite normal. How I wished I had urged her to call a doctor. I didn't notice her sounding breathless and she quickly dismissed it. That evening, some time between 8 and 9pm, my wonderful mum dropped dead, at her home and on her own. Post mortem revealed evidence of a pulmonary embolism on her leg. The blood clot killed her and Our lives will never be the same... The reason for me sharing this is the questions I want to raise. Perfectly normal although I realise it won't change anything but it could change someone you know's life? If the hospital had a better understanding of Parkinson's disease and the inactivity it causes, would Mum have been been more closely monitored? Would a stronger form of blood thinner have been used?

Back in 2014 when mum was hospitalised due to pneumonia, my brothers and I were concerned that the doctors and nurses were unsure as to how to administer her Parkinson's meds. She didn't receive them for 2 days. My brothers and I picked up on this and contacted her neurologist who was very concerned and made contact with the hospital regarding how to make her drugs soluble so that they could be administered through a tube. Mum later said that us intervening had saved her life. So again, is Parkinson's so specialised that perhaps the disease is not fully understood? A very important point that came out of that hospital stint was that we didn't have a drug list from Mum as to what she would take and when. She had since gave us a sheet just in case, there were some 32 tablets a day she needed to take. Whilst I said raising these questions isn't going to change the outcome for us, I feel obliged to share our heartbreaking story with you. It's my duty if it makes a difference and is read by the right person xx


#2

Hii Emma

Thanks for taking the trouble to post this.  Unfortunately, its not that PD is particularly specialised as   other long-term conditions  are not understood either.  ..My friend who has just had breast surgery said the hospital didn't have a clue about how her Type 1 diabetes should be managed and worse ignored her protestations.so that she had to phone her consultant on her mobile.. Above all don't assume that they are aware of  their ignorance which is the real problem I feel.  No one can be a expert in everything

I carry with me in my handbag a list of my PD meds.together with drugs which must not be used and two other long-term condition meds. but you would have to make sure the list and dosages was regularly updated.. 

You might be interested to look at the PD UK "Get it on time" , hospital stay publications, 

Hopefully, someone else will be able to help you with  your questions regarding the blood clot which took your mother from you

 

Best Wishes.


#3

Thank you for taking the time to respond.  Do you know whether  there is a card or keyring which PD sufferers can carry around with them, in case of an emergency (a bit like diabetics?).  It could even refer to their own doctor or neurologist.  I'm just wondering what could help in these terrible situations.  Perhaps even an understanding as to how certain antibiotics affect the effectiveness of parkinsons meds (which in my mum's case led to increased lack of mobility which then resulted in the blood clot that killed her). 


#4

Hi Emma

 I'm a PWP and my wife got me an SOS talisman pendant it contains all my relevant medical info and important contact details including name and address , I have LBD so may get lost ,

as Eileenpatricia says you need to keep it updated regularly but it is good to know that no matter what state I may be found in all my info will be with me ,

   Live well.  Cc


#5

When I was carer for my OH I wore a bracelet that said I was carer for .. and essential info like his name, he was PWP, had dementia and a help number.  So even if something happened to me he would have suitable help.  I gave me a lot of peace of mind.

Regards to all

Hattie


#6

Anyone who has an iPhone has a Medical ID screen on their phone. That screen is accessible through the lock screen (swipe right) I use this to record my PD diagnosis, medication and the times of doses etc. In the event of an emergency this info is immediately available to ambulance, hospital and care staff.  There's ample room for emergency contact numbers too. 


#7

I amazed that PUK have not advertised that there IS such a card. Both my husband and I carry this card, with full details of his medication, doses and times, GP & neurologist contact details,in our wallets. 

It is in the welcome pack that our local branch, and I as membership secretary, give out to all new members.

Also,as a carer, I carry a card with  all the emergency contact details should an accident  happen to me. I got this carers card from our local surgery.

I would also urge anyone to install a key safe and register the  details with your local equivalent of what we have in our area, which is called Careline. It comes at a small cost per quarter but the emergency buzzer is a must for my husband when I have to go out shopping and gives me some peace of mind.


#8

Hi,

Incase anyone is looking for these:

Here's the link to the medication card, which can be used to record all your drug treatments, your details and your healthcare professionals' details: https://www.parkinsons.org.uk/content/parkinsons-medication-card

And the alert card, for people with Parkinson's to carry in case of emergencies or when having difficulties with movement or communication. https://www.parkinsons.org.uk/content/parkinsons-alert-card

All of our publications are available free of charge. 

Best wishes, 

Joanne 

 


#9

Thank you all x