My Parkinsons story

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1

Hi

Here goes… better late than never!

I started to feel different probably at the start of 2015.

I was noticing things mainly at work, sitting in meetings and i couldnt follow the thread of the meeting as there was too many people talking at once, there were things i needed to say but i couldnt find the words even though I’d been doing the same kind of work for 15 years.

Then i started to find it difficult to hold a pen or type and the tremor started.

I started going to see my doctor, however, i was only ever able to get an appointment with the practice nurse who constantly told me there was nothing wrong with me. At one point, her exact words were ‘there is nothing nasty wrong with you its all in your head’.

Around about the beginning 2016, i went to see her for the final time and asked her to refer me to see someone as i felt as i was going mad as my tremor was alot more noticeable and she said she would even though it was against her better judgment!

I eventually got the referral for a neurologist for the 16th August 2016.

I attended the clinic at Penrith with my sister and we walked into the neurologists office, sat down and the first thing she said to me was, ‘so you have Parkinsons disease’. She then proceeded to talk about the medication she was going to start me on and after giving me a request for a prescription she said she would see me again in 3 months time.

That was it! Give me a life changing diagnosis and see you later. I was 46 at the time.

I took the request to my doctors and was told to collect the prescription the next day, i went to collect it the next day and was handed the prescription by the receptionist. When i asked if the doctor wanted to see me, i was told no.

I walked out and went straight to another surgery and joined it, who might i add have gone above and beyond to help me.

Then i was introduced to the West Cumbria branch of Parkinsons uk.

After that came the whole ordeal of the benefit system as a month after i was diagnosed i was ‘let go’ from work

I have worked all my adult life whilst raising 4 children so this was completely new to me.

I then found myself living on ESA which was £73.50 per week but as i live alone and in a council house, i had to pay £23 bedroom tax for the 2 empty bedrooms. Leaving me with £50.50 to live on.

I applied for PIP and it was arranged for a an assessor to come to my home. The chairman of the West Cumbria branch of PUK agreed to be present with me for the assessment.

When the woman came, John asked her if she wanted him to give her a little information about Parkinsons and she said no she wasnt interested, all she needed to know was how my disability affected my day to day life.

The assessor was very abrupt and came across as being very judgmental.

She was in my home for 2 hours and honestly by the time she left i was inconsolable, i felt degraded, partonised and humiliated by how she had conducted the whole procedure.

When the decision was made i was only awarded the basic living and basic mobility component.

I decided to appeal the decision and with the help of the local citizens advice bureau who were fantastic.

However, this did result in myself having to go to a court tribunal and sit in front of a panel consisting of a judge, a doctor and a disability specialist.

It took them 7 minutes for them to award me the next level up for both living and mobility components of PIP.

Whilst i was in court, i refered to some comments that the assessor had written in her report about me.

  1. My appearance was clean and tidy and my house was and i didnt look very disabled

  2. I was uncooperative as she had wanted me to stand on one leg and shut my eyes to which i had said no because i would fall over

  3. She also commented that i could manage the stairs perfectly fine.

This lady had a background in maternity and freely admitted that she had very little knowledge of PD.

Now in hindsight all the signs were there but i didnt put them altogether

Lack of sleep

Anxiety

Depression

Lack of energy

Constipation

Tremor

Pain

and now my balance is affected quite a lot.

I’ve fallen down the stairs quite a few times, not so long ago resulting in breaking my foot in 3 places, so now i have made the decision to apply to the council for a bungalow because i am frightened i have a serious fall and noone finds me.

So now the fight with the council begins… watch this space!

I am angry at everyone and everything, of course, it doesnt help that i have noone to talk to it all about because my family choose to deny that there is.anything wrong so i pretty much isolate myself because its easier that way!

Kind regards

Emma x

2

Emma,

What a terrible story, thought mine was bad enough.

I was told my tremor could not be PD as it was only in one hand. I was referred to a neurologist, as it was probably a trapped nerve or spondolyosis. When I was told there was a 15 week wait I decided to pay for physio, which I attended a few times before I started to feel very ill and feeling I was going to pass out. Cutting a long and traumatic story short I paid to see a private neurologist who within 5 minutes knew I had Parkinson’s.

I am now on medication and feeling a lot better, but can’t seem to get rid of my feeling of weakness and balance issues.

Margs x

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3

Emma, you poor girl, totally unacceptable but not totally surprising. I saw 6 different doctors over the space of two years, till I insisted on seeing a neurologist.
Be sure to visit the forum often , we all feel each other’s pain.
Don’t isolate yourself.
Good luck with the council, where do you live?
Virtual hug coming your way
Sue xx

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4

Thank you for sharing. I, too, feel like I have no one to talk to about Parkinson’s because everyone wants to deny anything is wrong. It really helps me to read posts on the forum because I learn that I am not alone and many people, like you, have suffered from mistreatment much worse that my own. I wish you the best in your further fights. I will follow your story.

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5

You haven’t said whether anyone has mentioned contacting your local Parkinson’s Nurse Specialist. He or she is likely to be more knowledgeable than your GP and will be available by phone or clinic/visit. I usually make a call to mine before my routine clinics at the Neurology and agree what the next step is going to be and present our choice to the Consultant which he usually agrees. I have an excellent relationship with my GP and he is happy with this arrangement. With three people involved it is important to be tactful, but I have found that Consultant and GP are happy to let the Nurse Specialist ‘take the lead’ generally. She obviously has a good professional relationship with them.

In the meantime, try to stay positive. Easily said, I know, but do try.

Take care.

Bepo

1 Like
6

What sad and difficult stories. We have had wonderful support and care since my husband was diagnosed in 2012. I am his carer and the support offered to me is wonderful. We see the consultant and nurse twice a year. We have been offered speech therapy, physio and are able to contact the nurse if we feel the need. Without all of this we would struggle.

7

Hi
Thank you to all for your kind words of support.
BEPO… i do visit a Parkinsons clinic and have limited access to a Parkinsons nurse, unfortunately in the area I live we only have a part time nurse who has just started as our old nurse left and i have not met the new nurse yet

8

Hi,
So i thought Id update everyone…better late than never.
I was offered a bungalow within 6 weeks of applying for one and it was the best move ive ever made. It took alot of hard work to make it my home but i have.
Then of course lockdown hit and my mental health took a massive hit as i live alone with my 2 dogs and in 3 years i had 1 phone call for my consultants assistant- the forgotten patient.
But things seem a bit brighter even though my symptoms are getting progressively worse i love my little home and am happy here.
Ive finally managed to see a consultant and she was lovely and very easy to talk too.
There is a question id like to ask as this is something im struggling with…
How do i explain to my family that when i say im tired im not being lazy but i feel as if i physically cant move and they just dont get it and i think they think im just being lazy…its at the point where it upsets me how much they just dont get it

Love and shakes
Emma x