About Introductions and personal stories


#82

Thank you Pippa for your kind words and understanding. I feel so alone - not loved or even cared for anymore …even trivial things such as him being present for the electrification part of the time so that I can leave for work is even difficult for him to be around. He wants to spend all his free time being in the moment “ meaning that he would like to spend his time playing soccer or surfing and I need to check with him if he is avaible. I guess what I’m saying is that if my immediate emotional needs can’t be met he can at least meet the responsibilities of helping me take care of our home. I’m so sad today because even small thing like this I have to fight with him about my needing him to be present so I can go to work while he is off for the day. These are confusing times for me emotionally and sometimes I’m just physically drained trying to make sure everything is taken care of… I’m sorry if I’m feeling down - I seriously feel sometimes it would be easier for me to walk away if he said he wanted to leave so I wouldn’t have guilt of leaving or wanting to leave sick and selfish man. Is it wrong to want him to treat me kindness and love me and take care of me while he can - so when it’s his time I wouldn’t feel so resentful staying with him- and taking care of him. I do that now take care of him physically - emotionally and financially. I feel sometimes he beats me emotionally where I question myself - and think how horrible I was to ask of him to help without checking his schedule. I’m not sure who I am or what this life has planned for me - maybe in some ways God wanted me to put all my efforts into this human being because he wants me to grow and feel sympathy. I will try hard cause I know it’s not easy waking up with PD… or was this always who he was but now the PD has magnified his behaviors. Which came first ? I know I’m not first anymore - I feel giped somehow.


#83

Hello.
I’m 72, not yet diagnosed.
I have arm swing assymetry.
My left arm just hangs there, right arm swings away.
Strangely, if I stop my right arm swinging by clutching my pocket etc, my left arm swings normally.
I have ‘phantom smells’, and occasional imbalance/lurching when walking. Not often, though.
Is the arm swing thing typical of PD?


#84

Hi, having had this disease for 10 yrs I can understand how you feel. You have to give him a bit of slack , he will not be doing it on purpose. I am lucky in as much that my wife does not mind me disappearing for a day or too fishing. I enjoy doing jobs around the house and if anything know that I do too much. Although I know it is impossible, try to imagine what it is like for him. I remember those words " for better or worse " , well these are the worst times but we just have to suck it up and get on.


#85

g morning.5 weeks since diagnosis,…ugh…could be worse am retired ,managing finances, still diriving and getting about,not much support from gp(s)… bristol,you have to ask pertinant questions! dopa pills help though


#86

you are a heroine,i think some famillys’ are too macho (?)…having PD is a long term issue,like arthritis .some people seem to cope for years… my exercise class is helpful.near bristlol ,partly because we all have it!


#87

Hi everyone,

I’m here to learn more about Parkinsonism, which my dear mum has been diagnosed with, and to also find moral support for myself as it has literally had life changing effects on my own personal circumstances. I now live with and support my mum as best I can, whilst working full time, as she struggles to stand/walk/feed herself due to her Parkinsonism.

Is there any specific advice anyone can give on Parkinsonism? Such as medication/support nurses/where to find local support etc it would be very much appreciated.

Many thanks for your help. Hoping there’s a fairy godmother or father out there somewhere to help advise!

Please don’t expect a quick response to any replies…busy…busy…busy!!

Thanks again
Emm


#88

Hi I am Mark and I have recently been discharged from hospital.
In had a PET scan that showed up a cloud in my left lung suspected to be sarcoidosis, this is causing peripheral neuropathy in my arms and legs. I also had a DAT scan that showed abnormalities in my left side of my brain. This with various motor symptoms spurred the consultant to start me on a 2 day anti sickness drug and then onto Siminet for the treatment of Parkinson’s.
I take pregabolin for the nerve problems.
I am 46 and live with my wife and 2 sons 11 & 13.
I am hoping to return to work in around 3 weeks.
Can anyone tell me when the benefits of the parkinsons medicice start showing ? Thanks Mark


#89

Sorry Mark for not answering earlier. All I can speak is how mine went. I noticed it on day one. The dose was too low. My doctor slowly increased my dose ant time schedule. My best advise is to keep a log on time taken of meds and the change if any you feel.(Tremor,stiffness,speed of thinking,cramps lessening, and so on) Also keep track of length of time when the symptoms go back to the way they were before you took the dose.

The more detailed imformation you give your doctor the easier it will be to adjust what works best. One thing about PD is we are all unique.


#90

Hi there Gremlin,
I was just taking a look through past posts during an insomniac moment, and wondered how you are doing at the moment?
Reading your post before the one I first replied to made me wonder whether your husband’s frequent use of cannabis, and alcohol combined, isn’t as much a cause of the anger, paranoia, selfishness etc etc that you describe. Would definitely be worth looking into and discussing with a professional who knows about such things, though I am aware that doing anything about it is a very different matter and your husband would need to see the reason to change . Both substances are v addictive…you don’t need me to tell you that.

I beg to differ with the idea that when we promise “for better or worse” that that includes anything and everything that could be worse. Unless someone is mentally incapable ( and even under those circumstances) then abusive behaviour should not be tolerated or allowed to continue, and by abuse I mean all knds of physical and non physical actions or behaviours that Impinge on another person’s well being . It does not do the “abuser” any favours to allow such behaviour to continue, let alone the person/s on the receiving end . Which is not to say that doing something about it is easy…the very opposite.

If you are anything like me, then tiredness and exhaustion Make it very hard to think things through calmly and rationally, which is where seeking help from a trusted friend, or someone at the end of a helpline can be invaluable…their brains can do the thinking that yours is not capable of at that moment.

Best wishes, Pippa

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#91

Hello Sue
What you say sounds familiar - I actually wonder if my OH has dementia too because his thought processes seem so changed, slowed or absent. Such a change in personality that it seems like my husband has left me and someone else that I don’t know or want has taken his place. He does not speak or communicate so we live entirely separate lives now which breaks my heart but I can’t cope with pretending any more when he makes no effort to help himself despite having regular physio and psychologist. It’s my life outside the house that keeps me going - I’m planning to walk a pilgrimage and do a long distance cycle ride. Sounds a bit hyperactive but my level of anxiety after everything that has gone on means that I can’t physically stand still anymore.


#92

Hello!
II am not sure about this introduction as my husband OH has not been formally diagnosed with Parkinson’s!
We are an ordinary couple , married nearly 55years, and he is still the man I idolise! Like all couples our life has been constant change and through the years but never in a million years did I expect to see this independent, virile, and outgoing man becoming dependant on others, confused, and frail.
We are parents to three wonderful sons, three lovely daughters- in - law( two of whom are sisters! Our two eldest married two sisters) , seven grandchildren ( 5girls, two fellas, and seven great grandchildren so family gathering used to be very hectic! . Without their wonderful support I cannot imagine where we would be!!!
30years agoOH diagnosed as insulin diabetic, , in turn caused various related health problems !
Years ago we were interested in County and Western group, loved the music and I enjoyed dancing OH was never a dancer,
Later in life we joined a bowls club, it was at the time a life saver, as OH was unable to work due to the then restriction in insulin dependant diabetic! it was a a great pastime. I worked full time and bowled as and when I could!
Approx. Seven years ago we moved into a ‘ retirement apartment’ thinking that the worry of the gardening , maintaining the bungalow, etc would be a good move! Also with on site carers looking to the future!
Well the future is here! But I truly didn’t expect it to be as it is!
Five years ago (on a holiday to celebrate our Golden anniversary) OHtook a really bad fall? He had recently ceased bowling due to pain and slow movements!!!?
Various slips and trips? Moments of blankness etc so following hospital admission on Christmas Day 2016 I told the hospital I was worried re Parkinson’s!
I further visited GP , who after OH discharge saw us together and after seeing OH sent to a neurologist!
So here we are all this time later without a diagnosis!
Memory clinic diagnosed MCI in July 2017, OH has had brains scans , lots of tests but never a Dat scan( not sure that the correct one?)
On November 7th 2018 he slowly went to one side, couldn’t eat or stand and was rushed to Stroke unit, in hospital for 19days! The last visit to neurologist he was asked ( after I explained about hallucinations, ‘ odd you see things that are not there.’ We’ll surely if he ‘saw’ them he thought it was there,! X
Since home he cannot walk unaided and then only a few paces, he has a wheelchair, he has instances of blankness, he is cutting food very small and today says he has a ‘ food trap’ when trying to swallow?
His voice is very soft and his poor handwriting has become very small and virtually indistinguishable!
He has had theee s’ slips from bed in the past 3weeks and cannot raise from lying position!
The GP has requested Physiotherapist and I am chasing for occupational therapist!!!
He has been assessed for long term care, personal care, assisting to toilet during day and ready for bed at night,
This is all so very sad!!!
I have a supportive family, thank goodness, but it’s so very hard as I have disabilities myself,
We or I try to take each day as it comes, today he seems able to move a bit better! But the confusion in worse today!! He takes in some details but if repeats to someone else gets the information muddled.
Memory clinic to do another home visit 28th January,
He is at present fast alseep! Frequently nearly all day!
I know from reading on here I am very lucky, having carers, a supportive family etc,
I will continue to try to plod on!!!
It’s just so very very sad!!

LadyM , hzello to everyone! I am desperate for help, advice and I suppose support. I am convinced that my husband has Parkinson’s, we are now two years down the line for a diagnosis but this week he has had a few freezing incidents! I am frightened as I do know what to do when this occurs!
I shall be phoning the GP on Monday but if anyone can advise me now I will be forever grateful!
So main things and details to tell but this is so important , the rest will have to follow!
Thank s in advance!


#93

Joined up as my mum is a PD sufferer and has been for 15 years. It has got to the stage where I need to reach out to other members in the PD community to talk to, seek advice and reassurance from & maybe offer the same in return.


#94

Hi Lady

I am so sorry to hear you are going though all this, well I don’t know much but I must say it is so important that you get to talk to your doctors and tell them everything you have written on this, as yes you need some help
And you need both of you need to know if or what your husband has, and how they can help him and you to help him too. Like I said I don’t know much but I must say everyone on here are amzaming people, someone will always respond to what you write, and sometimes that’s all we need is for someone to listen and advice you time to time, well all the best and keep in touch. I must say it’s so sweet to hear that you both have been married for that long.

Regards Raz


#95

My name is Jean and I was diagnosed with Parkinsons around 12 months ago. I am 68 and was devastated by the news. I have however found a source of medical cannabis which elevates some of the systems but worry about the legal side. Cannabis is the only thing that stops the shaking in my arm and leg. Has anyone else had any experience with this.

Thanks for being there.
Jean


#96

HI thanks, why cant I post?


#97

Hi my name is Martin and I was diagnosed 14th January 2019 aged 52. My first signs of PD was a stiff neck, off and on for about a year, and a slight head tremor which led me to believe I had a trapped nerve, numerous visits to my GP later I was sent for a MRI scan which showed nothing. I was sent to see a neurosurgeon who could see the signs immediately. Strange gait when walking, which my wife pointed out to me some days earlier, lack of facial expression, strange hand writing, all tell tale signs of the onset of PD. I was in total shock with the news and it was really hard to take.


#98

Hi Martin

I am sorry to hear that you have been told that you have Parkinson’s, but now maybe the doctors can help you in the right way due to your diagnosis . Also well come on the forum, people here are nice so if you have anything on your mind people on here can talk to you and help you. Take care Raz


#99

Hi @Martynolan,

A warm welcome to the forum. Just to echo what @Raz1 said, the forum is a great place to talk to people who can help you with what you’re going through.

I appreciate that your Parkinson’s diagnosis is hard news to digest which is why we have the information and support to help. We have a introductory guide to Parkinson’s which contains information about symptoms, treatments and living with Parkinson’s. It includes information on everything from work, driving, diet and exercise to emotional issues and relationships. you can download this information here.

We also have a ‘newly diagnosed’ section on our website with a vast range of information that will be helpful to you. You can find this information here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

Our helpline and Parkinson’s local advisers are here to answer any questions you have about your recent diagnosis and life with Parkinson’s. Do give us a call on 0808 800 0303 or email us at [email protected].

I hope you find this information helpful.

Best wishes,
Reah


#100

Hi Reah
many thanks for your reply, its great to know that there is so much support out there for every one to tap into, just still trying to process all my thoughts on what the future holds but I will make sure I fight this best I can


#101

thank you so much for your reply
really good to know that there are plenty of people that I can talk to