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.


#74

Thank you. It is re assuring to know that there is help and advice.


#75

I am new to this forum and unsure how to se it!
I’m struggling today, I have a partner diagnosed 18mths ago but probably it’s been around years. I struggle with his depression, anxiety and resistance to ‘taking it on’. I appreciate the enormity of PD but our life is being lost in a depressive haze. I can’t tell how much is the PD, how much his depression (probably both) but he has stopped doing almost anything unless he really enjoys it…leaving me to do literally everything including trying to spur him on, keep a level of lightness in my demeanour at least.
Today I have failed. I’m feeling low, discouraged, resentful and exhausted. I will be fine tomorrow. I’m 62 and work p/t for myself, he’s 66 and winding down to almost no work as his focus, concentration retention of things has majorly dropped off. I do do things for myself and have little breaks but it takes strong boundaries to do it and I dread retiring as we will have endless days like today. I don’t know how to send this but it’s probably done me good to get it off my chest!


#76

Hi @Patq,

Welcome to the forum! I’m really sorry that you are having such a rough time at the moment. It is often understated how difficult it is to be a carer and support people with Parkinson’s. It’s great to hear that you are doing things for yourself, as it is really important for you both that you look after yourself.

We have some information on anxiety and depression on our website that might help you with suggestions for loved ones and carers. I hope other forum members can support you by sharing their experience and advice, but remember that the helpline is also there for you, not only to give information and advice, but also for emotional support and to get things off your chest. You can call us on 0808 800 0303 Monday-Friday: 9am-7pm and Saturday: 10am-2pm.

Best wishes,
Mara
(Moderation Team)


#77

Thank you.
Afraid it sounded like ‘it’s all about me’.
I know it isn’t yet our entire life feels like it depends on me sometimes.


#78

I notice if my husband has few drinks - not beer but vodka and juice he is calmer- meaning his tremors are not as bad. He is now smoking marijuana every night. It use to be he would smoke little here and there but he now drinks and smokes every night. He doesn’t go overboard. He said the smoking helps him a lot with anxiety and tremors.


#79

Hi my husband was diagnosed a year or so after we got married. He has son from previous marriage and I have 2 of my own. I’m a nurse but currently work as hospital liason for rehab company. I notice that my husband moods were changing especially at night if you would wake him while sleeping he would get so angry… and could not remember next day what happened. Anyway his tremor started with one finger and he showed me and then mood swings at night. I felt and knew before he was diagnosed he had PD. When it was confirmed he had PD he started changing - tremors are obvious- mood swings - and mostly only living for himself… he doesn’t want to talk about the futures because he states that he will Never have PD like other people out there - that it’s different for him. It worries me and our lack of communication since diagnosis has worsen. He has had PD for about 6 years now and will not take any PD meds. He insist that vitamins and eating well will cure PD. I however know that his fate will be different - I have taken on more tasks in the home - I’m the breadwinner in the family… I’m honestly scared to take care of him physically -emotionally and financially. His family after PD diagnosis are also denial - they have been mean to me they act as though he does not have it and treat me and my children poorly. My husband spends great deal of time with his son and whatever he wants to do. Leaving me with most chores and groceries to myself… I know I sound selfish because he is the sick one… I feel alone - taken for granted… and Feel exhausted most days from taking care of children’s needs.


#80

Hi I can relate to how you feel- my husband was diagnosed 6 years ago and he is now 51 and I’m much younger than him by 6 years. I’m the breadwinner in our relationship we have total of 3kids together but previous marriage… I to worry about the future - I feel that my husband has been different ( mood swings - jealousy - lazy and only thinking of living for himself and his son)… he doesn’t help around the house anymore or groceries shopping he is very paranoid lately … he has been sometimes verbally abusive even toward me. I’m shocked sometimes at his anger when we fight - he doesn’t back down always wants to be right and feels entitled to vacations and relaxation… he works as teacher and is off all holidays including summer time even then he doesn’t help out around the house. I can’t explain sometimes how he treats me - I just know this is not the man I married. His family is not supportive and denial about his PD as much as he is. It worries me and I feel awful inside wanting him to not the me for granted - I’m working so hard as to make sure I do not loose my job… our relationship is not the same. I worry that financially we will be drained - I try to talk to him about the future but he won’t go there with me. I find myself sometimes being so frustrated and wanting to sometimes leave him. I resent him and his family for treating me and my children poorly. He blames me for his family not wanting to be around us. I seriously don’t know how to feel anymore - I have loving family but they don’t understand what I go through… if I express myself to my mother she gets upset and wants me to leave him. She feels I’m still young and that I shouldn’t have so much weight on me. I know and maybe he is not aware of his behaviors - I have started counseling but it only makes me more upset inside… I joined forum so that I safe place to vent and just know I’m not going mad - thank you and I hope someday there will be cure for PD


#81

Sending you a big virtual hug. At least on this forum people DO know what you are talking about, even though everyone’s experience is unique. Am really not sure what helps…different things for different people I guess. Some find “positive thinking” works, others are encouraged by simply knowing that others understand and will listen and not judge…even though it can be hard not to imagine that people are judging. For me, I don’t want sympathy, but do find practical advice helpful, if only because in my usual state of mind I often can’t think straight enough to know what to do or which way to turn. I know that sounds childish…wanting to to be told what to do, as if I am not taking repsponsibility myself, but that is how it is. At the same time it is hard to relinquish even a little bit of control, so that when a friend said to me” Go for a walk…NOW…I’m here and will take care of anything that happens” , it was still hard to do.
What I find the most difficult is the changeability of my husband’s state of mind…it sounds like you are experiencing something similar …sometimes he is pretty much himself, or enough so for me to feel I am with the person I know him to be, and love, but then he changes, either mood or mental ability and I have to switch into a completely different mode, and all too easily feel resentful that I am having to do everything and put up with how he behaves and what he does without thought for the consequences . I know, I know, …” .in sickness and in health” and all that, and I will stand by that, but it is like being with a very different person to the one I married.it feels so disloyal and unkind to complain about him and his behaviour , not least of all because he is the sufferer and victim of this awful condition, but unless people see him at close quarters for an extended period of time, they don’t get it at all. I try so hard to separate him from the condition, in my mind , and that helps, but I am human too, and feel tired, with constant neck and headache due to sleeping issues, not to mention the guilt and shame for not coping as well as I would like to.
If you can get out from time to time and do your own thing, that would be good. As for counselling… a mixed blessing I guess. I find Irvin Yalom , R. Scott Peck and James Hollis’s writings about human psychology and therapeutic encounters incredibly helpful…getting an inside view of what other people are coping with and how…and if nothing else reassuring me that whatever people seem like on the outside, internally most people are having a tough time of it, if they are at all reflective about their lives…life is challenging , whatever our circumstances and some people like those authors are brilliant at putting it into words and making sense of it.
Warm regards,
Pippa