About Introductions and personal stories


#62

Hi there I am 52 gay live in Bristol was told I had Parkinson’s about 2years now would be great to be able to talk to other gay men with Parkinson’s


#63

I have been ill for about 30 yrs. Parkinson’s diagnosis for 18.
I gave up work in 2003. Am married, 25 yrs this August and have a 23yr old daughter. I have 2 degrees in languages and linguistics and still ask, why me?
I can’t live without my husband and my daughter yet am suicidal. “you can’t do that to your daughter”
ok I shall carry on…………
ropinirole/ eldopa/ Prozac/ slow release…/immediate release/ wheelchair living/satin sheets/ PIP/choking/swallowing………
and yet
my family will be excessively patient and loving
I push them to the limit and I can’t dance any more


#64

I was diagnosed with Parkinson’s in 2017 after a year and a half battle with breast cancer twice, 2 mastectomies and reconstruction and a 4 surgeries for an infection in an implant which I finally lost. I went through treatment and 8 surgeries over a 15month period. The doctors said I would have been diagnosed eventually with Parkinson’s but all the surgeries my cancer I just got it 15 years earlier. Lately I have really been Struggling with just being down and I always have Head pressure in the back of my Head. I am on Carb/Levo 25-100mg. I take 2 tabs three times per day. Have been having a lot of Nausea on the medication especially in the am. Does anyone experience this. Thanks Whopper1


#65

Hi A1

Hope you are ok

I was diagnosed18 months ago and with meds (after a few false starts) am doing ok. I’m gay and live in Bath and would be happy to talk!

Cheers

Hi everyone

I’m new to the site though was diagnosed 18 months ago. I’m lucky to have had the support of a ( same sex) partner, family , friends and very good local medical support who have got me back to a good place despite a few meds hiccups on the way! I’m now ready to talk to others and gain some wider perspective on coping with Pd from likeminded people ( (I’m 49 and a fitness addict ) in my local area (Bath/Bristol) any help advice on local groups would be greatly appreciated!


#66

Hi A1

I saw your message and can relate as am a gay man with Pd living in Bath. Having got to an ok place with it all I’m keen to talk to others to share experiences support! If you you would like to do this let me know!

Cheers N


#67

Hi @Whopper1,

It sounds like you’ve been through a lot of trauma and my heart truly goes out to you. In light of all the information that you’ve shared, it’s completely understandable that you’ve been feeling down recently.

However, we’re here to help in any way we can and as well as the forum, you may find it useful to speak to a counsellor for more emotional support. We have a lot of information on this via our website as well as info on our face-to-face local groups that may also be of benefit to you.

Feel free to browse this section on our website here - https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling.

Our helpline is also here to help if you need someone to speak to so do give them a call on 0808 800 0303.

Best wishes,
Reah


#68

Hi there mrs. t
I wanted to reach out to you with some words of comfort but it is tough to find them. There is no rhyme or reason to this stuff that the universe throws at us or the “injustice” involved. There are no easy answers, if fact no answers really , but lots of little things might help . Something I use a lot at work is something called externalisation, which involves seeing the problem as having a separate existence, rather than being an intrinsic part of you , and talking about it accordingly. So, for example , one might ask, how is the Parkinson’s behaving today , or treating you today, rather than how are you today ( better still, give it a truly vile and fitting name)…the answer to which is about it, and not about you. Then you might talk in terms of “it” is really getting me down I wish it would bugger off and leave me alone…etc , and this separate yourself from it a bit. A verbal trick maybe, but it can help.
It helps me when assisting my husband …remembering that it is not him who is driving me to distraction, but the PD. Trouble is that the PD doesn’t let him get a word in edgeways most of the time. I hate it with a vengeance
Warm regards brave woman,
Pippa


#69

where the hell did you come from?


#70

so sorry, just scrolled up. thank you


#71

Hi’
Im Norma, 69 and have had PD for 7 years. I am married and need my hubby more than ever.
I suffer the usual Pd problems of constipation, unable to turn in bed, loss of sense of smell,
do everything slowly and find Im shattered after doing the simplest of things, like getting showered. My main problem is my legs. They ache something rotten during the night. I ,ve tried magnesium oil and find it works sometimes but not others and it can leave my legs itchy for days. I cant walk very far and have to sit down frequently wherever I go, which is difficult as many places dont have seats. I can still manage the stairs but,like everything else, only slowly.
This is my first time on here and hopefully I,ll get some good ideas to help with my problems.


#72

Hi Norma,
I am 77 been diagnosed nearly7 years and have similar symptoms. One piece of good advice I got from my pd nurse was to try satin sheets and satin pyjamas, this made turning in bed so much easier.
Like you it has always been my legs can’t offer any advice I am now so slow and stiff and also find the stairs difficult as do most folk with pd .
One thing that helped with sleeping was amitriptyline but I was put on this when diagnosed with fibromyalgia a good number of years before being diagnosed with pd the doc decided to keep me on it I think others on the forum are also on it.
Hope this info helps let’s know how things go.
Cheers AnneD


#73

Hi Norma, in relation to your walking, have you thought of trying a rollator with a seat. I was the same, having to sit frequently and often little warning but this solved it for me.