Worse since diagnosis


#41

Yesterday I dropped Mirapexin completely.
So just half of sinemet and a half of Azilect for the whole day.
A very short period late afternoon / early evening of feeling tired.
I was still able to function though and I soon came out of it.
I started taking vitamin B supplements as it showed up on a blood test that my levels of B vitamins is very low.
Hubby


#42

Hi Hubby, Nice one H, it all seems to be going in the right direction. Thanks for the updates.

Mal


#43

Hi Malc.
I keep waiting to turn into a shambling wreck, but right now it’s not happening.
I’m not saying that I feel miles better, but my head is clearer and thats a big plus.
Hubby


#44

Hi Hubby,

All sounds very positive, sorry if this has been answered earlier in the thread but have you told your medical team what your doing? I suspect you haven’t otherwise they’d be having kittens :joy:.

I certainly admire your bravery, I too think the medication is a waste of time and makes me worse.


#45

Thanks wildrover.
Today I have had a major test.
I was involved in a major car accident.
My daughter was driving up a fairly steep hill following another car at a good distance. This car signalled to go left and braked as if to stop. My daughter slowed down and stopped behind it.
For some reason the driver in front decided to pull left into the path of another vehicle travelling at speed down the hill. There was an almighty smash and both vehicles headed our way. We were hit with force and pushed backwards violently.
Our airbags discharged and undoubtedly saved us from serious injuries.
My daughter was initially trapped as her door wouldn’t open. I saw smoke/steam and somehow managed to rip the door off and pull my daughter out. How I don’t know. Even if she is 23 when she was crying " Help me daddy" something clicked in my head.
Six hours at the hospital and we were discharged. We are both black and blue and burned by the airbags but relatively unscathed. At least two of the other people involved were seriously hurt. One was not wearing a seat belt and hit the windscreen.
Anyway, possibly bolstered by adrenaline my new, almost drug free self, with a few wobbles and a bit of an emotional lapse when I spoke to my little grandson on the phone coped really well.

I was returning home from an appointment with an independent doctor called for by my boss of 15 years ( during which time I have had less than 14 days of sickness) because he is challenging my parkinsons diagnosis.
He does not want to pay me.
Hubby


#46

Hi @Hubby

What a horrific experience! I’m so sorry to hear that this happened you and your daughter. I’m relieved that you are both okay, however, my thoughts are with all those involved.

As you’re based in Spain, I’m not sure what your employment rights are, however, we have a lot of information on our website about work and Parkinson’s which you can find here - https://www.parkinsons.org.uk/information-and-support/work-and-parkinsons

I hope this is useful to you, if you need additional support, please feel free to email our helpline at [email protected]

Take care until next time.

Best wishes,
Reah


#47

I am now taking only half a sinemet a day. Losing the sinemet seems to be the hardest thing to do.


#48

Hi @Hubby,

Please let us know if there’s anything else we can do to help you.

Best wishes,
Reah


#49

Hi now I’m confused why is it that only us lot with Parkinsons understand the awful feelings in our head as well as all the other symptoms going on . Sometimes I feel totally stupid can’t make decisions,can’t concentrate etc. Then after an hour or so I emerge. I am taking 4 stanel


#50

Hi hubby

It is so sad to hear that you are not feeling happy about your self right now, yes people can be very hurtful and just think we will not say anything back as we need them, but that is not true, your daughter has to understand the hardship your going though and how is a effects you as a perso. Just by having a condition like Parkinson’s or any others does not mean that we have lost our brain, our speaking skills and to understand and to show empathy towards others. You truly need to keep going no matter how low and hard it may be. ? Plus remember you are the head of your family, they need to see you try and be happy. I am sure you love your grand children but if you are not well and you look after them they will see you not being your self too, so you do what is right for you on that day. You need to keep your self happy too once in a while .

Kind regards Raz


#51

Thanks Raz.
Of course I know you are right.
I so want to be my old self that I try my best to be normal.
Yesterday I had my grandson who is just two, for seven hours while my daughter worked. He is brilliant but he is two, and very tiring. My daughter doesn’t seem to realise how much he takes out of me.
Yesterday my wife wanted to get her washing and housework done so I was mostly alone with him.
It has left me exhausted today.
My daughter is off to work at 3.30pm till ten…
I have already been summoned from my sleep because my grandson wants me.
My daughter Is a single parent living with us and she needs our help, but she is 23, we are both nearly 60.
My biggest worry is that I am going to make a mistake when I’m with him and he gets hurt. He is so fast and lively.
Being with him is a good thing for me and the parkinsons.
Sometimes though I have to try and think about myself.
Not easy when you’re not used to it.
Regards
Hubby