Parkinsons

Message deleted by Gransnet. Here's a link to our Talk guidelines.

Message deleted by Gransnet. Here's a link to our Talk guidelines.

Message deleted by Gransnet. Here's a link to our Talk guidelines.

Message deleted by Gransnet. Here's a link to our Talk guidelines.

My lovely neighbour R had it - tremors were bad. But, what a spirit ! He’d often come over to me for a chat,while his wife was out shopping. I was a newbie to the area, so he would give me all the ‘gossip’

My cousin in Holland has Parkinson's and it has progressed slowly over the years so that she is now quite disabled. The things she hates most is that people don't mention it. Parkinson patients sometimes get a fixed facial expression which looks like they aren't enjoying something. She feels people don't invite her places anymore but, although she can't show it, she is having a good time. She also doesn't like people trying to do everything for her. She is disabled but she can do some things for herself (and needs to). I would suggest that you do ask her about it and when you feel like she might need help say "do you want me to help" before jumping in.

Good advice as always madeleine45.
I wished in a way I hadnt told anyone about my cancer diagnosis and treatment. The questions and more questions really got me down and tired me out. But of course I couldnt keep it a secret from family and close friends.

Some people must have felt that now cancer is no longer a taboo subject to mention, then mention it they will.... constantly.

So just carry on being her good friend. Include her in everything as normal. No need to keep asking her how she is. The immediate "how are you?" fills me with dread. But of course it is the most common greeting.

Popping by for a cup of tea is a good idea..but let her know first

You sound like a caring friend. Its hard for you as well.

You are being a good friend and that is what counts. One of the problems I find is that the british dont tend to talk openly about things that matter, and then when you are really guessing about what you can do you can get things wrong without meaning to. I have cancer for the second time now. When I had ovarian cancer nearly 20 years ago, I found a mixture of attitudes. Many friends were keen to be helpful, but sometimes it did the opposite. So I am a singer and was a keen gardener. So if I met a friend at a garden or in the choir , or hadnt seen them for some time, then would ask how I was and how the treatment was going on etc. This was caring of course, but if I was engrossed in the music or the plants, I was actually having that little "holiday" from being conscious of the cancer. I tend to face things and thought about this and then I made what seemed a bit of a shock to friends but did work out well. I simply said "I dont have cancer at the weekends" which they used to then look surprised and wondered how to respond. But I would then go on to explain that I appreciated how much they wanted to show they cared etc but that if we were having lunch or gardening or whatever it was good to just enjoy that time together, and not have the cancer overtake everything. Some found it a bit odd but then it really worked. They knew what I wanted , and didnt have to wonder if they should ask how I was or what. It actually made it easier and more relaxed for everyone. They still asked how I was of course, and it allowed me to tell them if I was having a bad time.

So , if you have known them for some time, I would suggest you think about anything that they particularly enjoy. So for example, perhaps they enjoy swimming. You might find out which swimming pool has good disabled access and if they have a chair to put someone into the water (I use this myself) . This might mean your friend can still swim , when it might be a worry trying to go down steps etc. So you are looking to see what areas and interests are worth looking at , to try and estimate what if any help might be needed or wanted. Obviously things will change as time goes by, and they may need more help. It is a balance, as you also dont want to look too far in the future and start talking about when they cant drive or whatever.

I drove hospital car for over 10 years and heard from many patients things that they wished their family had offered to do for them, but they often wouldnt ask themselves. So again, it is not trying to crowd someone or offer to do to much, which can backfire as from what you say they begin to realize , if they havent already thought about, the problems that are likely to arise. At the moment, I would suggest that the most important thing you can do is to carry on keeping touch as you always have done.

You know the person, so perhaps at the moment it is partly the shock and a depression looking forward thinking of all the negative things and almost mourning what you will not be able to do in the future. They may also start to be self conscious and worry about holding other people up because they are slow walking, or worrying about sitting in public in a cafe in case they might spill something etc. It is a balance of trying to help them to carry on as much as they feel able to continue to do themselves, offering the sort of help that is needed rather than vague offers. So, for example you might say " X garden is open next sunday. Would you like to come with me, and I can pick you up.?I have been there before and the garden is lovely and plenty of seating. So that way you have offered an outing, made it clear that she should be able to get round as much of the garden she feels up to visiting etc, which while tactically covering the problems she has, does not mention the actual illness all the time.

I do hope these ideas give you some ideas, but what is the absolute rock bottom is that you are still her friend. She is your friend with a health problem, not a health problem who used to be your friend. Well done you for thinking of her and what you can do, and you are doing it already

That's very sad. She's same age as me and that's quite young to have Parkinson's. My mum had Parkinson's but was 88. I can offer no advice apart from be a good friend, like you are, and play it by ear. Ask her family but you'll know as you know her. Take care

.

But, presumably you had known them for some time and would have known if ingratitude and indifference to people's kindnesses was part of their personality?
Or, to sum it up in two words, their rudeness.

However, their lack of appreciation and thanks is totally unnecessary and rude so you really are better off without them.

Have you seen them since? Any comment on your lack of 'meals on wheels' deliveries? I do hope that you've been conspicuous by your absence!
.

crazygranmda

JackyB As others have already said, everyone's experience of Parkinson's is different and it is a progressive condition. Mum had the stiffening type, no tremors. She died aged 90, and her death certificate cited old age! The last 2/3 years were hard but she had a good innings.

My mother had Parkinson’s for 25 years. Horrible disease. In her care home they called the doctor for any little illness. She was kept alive for no good reason , too ill to die. She had the rigid type. Curled up in a featal position and eventually couldn’t swallow. When she could still speak she asked me to help her. I don’t know what I could have done. The new bill going through Parliament might have been a help to her.
I feel so sorry for anyone receiving a diagnosis. The only thing anyone can do is be a good supportive friend without dwelling on the negative aspects.

JackyB As others have already said, everyone's experience of Parkinson's is different and it is a progressive condition. Mum had the stiffening type, no tremors. She died aged 90, and her death certificate cited old age! The last 2/3 years were hard but she had a good innings.

GrannySomerset

Everyone’s experience of Parkinson’s is different and your friend is still your friend so treat her as you always have while asking privately what would be most helpful. Being aware of what is causing problems for her is kind and supportive but she is still the person she has always been, and will need people who care about her.

I agree with this.

A close relative had Parkinsons.
He was still exactly the same person. But had some added physical difficulties.

Is she part of the PD Warrior programme?

My neighbour, whose husband has Parkinson's, had a very narrow escape when her husband was following her and he fell, knocking her down too and landing on her! She just missed hitting her head on the edge of their dining table! She was winded and bruised her ribs but otherwise OK. They are both in their 80s. The event prompted her to review the private, emergency care package they have and change to a different provider, a few miles nearer them. He now has a hospital bed and other safety equipment that allows him to be at home. OP as your friend's condition advances, maybe she and her husband could consider an emergency care package themselves. My neighbour wears an emergency alarm for if he falls. It prompts, with a phone call, several other registered neighbours in turn, (including my son and me) to find one of us who is able to nip round and attempt to help. We've only been contacted once and luckily it was a false alarm.

Parkinson's is a cruel affliction but here's an amusing story:
My son and I were in the kitchen when a movement next door caught his eye. We can see our neighbours' dining room through our side window. My son said, "Are R and T away from home, do you know? There's someone odd looking in their house!" It was a dismal afternoon but the house was in darkness.
I glanced across and, sure enough, there was a guy looking highly suspicious, beanie hat pulled low, head torch on.
I said, "I'm going round there! I'll ring the door bell!"
My son said he'd come too. There was a van parked on their driveway.
Off we went but as we glanced in their front window we saw the back of T's head (our neighbour with Parkinson's). He was sitting on the settee. We deduced that the suspicious character probably wasn't a burglar so my son went back home but I continued on and rang the bell. Turned out it was their son, who had come round to fix something electrical, hence the power off and the head torch on!
All three, though, were very grateful that we had been good neighbours but, as I pointed out, they'd do the same for us, in some way, if they could.

Hi there, my Husband was diagnosed over 10 years ago, but he had it at least 4 years prior to his diagnosis,due to the symptoms being there but GP
kept making excuses saying he was too young to have Parkinsons !! The first 8 years he managed well with the medication but sadly the last few years he is changing every week. He had to finish working at 60 as he was unable to manage his manual job. His work colleagues all said they would keep in touch and meet up for a pint etc, sadly in that was 8 years ago and no one has contacted him. One of his ex colleagues actually lives on the same estate as us but unless we bump into him whilst put for a walk, has never contacted him. My Husband ( as do I) find it very hurtful. We have definitely found since my Husband's diagnosis who our real friends are...we would never have expected anything from his ex work colleagues, or have asked them to do anything for us and I often wonder if that was their worry? My Husband does miss the friendships he made and the banter and fun they all used to share when he was working...so my advice to you would please keep in touch with your friend and make time to have a coffee and chat with your friend,you will never know how much that would mean to her....Parkinson's is a very cruel disease for both the person who has it and their loved ones.....

A friend was diagnosed 26 years ago, and it is heartbreaking to watch him slowly fade away from being the capable person he once was, especially now that his dementia has a firmer hold.
I would say talk to your friend about her diagnosis rather than treating it like the elephant in the room and ask her how she would like to be treated, ask her too as to how you can help her be it by going shopping with her or helping her put her coat on
If you can find one get her to join her local Parkinson’s support group as well as any exercise group which is vital in maintaining overall wellness

I think you will have to see how her illness progresses. My FIL had it. He became very unstable on his feet and often dropped things due to shaking but otherwise he wasn't too bad. In his case the disease progressed very slowly and never became a major issue - he had other things that affected him more.

No, don't pester her but perhaps see her a little more often.

A friend of mine was diagnosed with Parkinsons. She was always a "can't cook, wont cut cook" person. I am a good cook and baker. For 12 months every week I took a good eal, cake etc. to hher home, to be sure they had something decent to et at least once a week. Two years ago I made a proper Christmas Cake (Delia's) decorated. In the January her husband came over and said to me "I am returning the plate which the Chistmas cake was on" Not once in all that time did either of them say the gifts were tasty or give a thank you. I decided there and then that I had been a fool and havent bothered with her since. Parkinsons is not an excuse to be ungrateful.

BlueBelle

My friend has Parkinson’s is on tablets but really seems fine walks well and no shakes or anything visible she’s about 4/5 years since diagnosis

@#£%&@#£%&

That is some consolation. Thank you Bluebelle. It means we have plenty more time. And research is advancing all the time.

And thank you everyone else. I think my main worry is that I don't.want to hector her and bombard her with phone calls and drop-ins as that has never been our way although we live only 2 villages apart.

She has looked into the local Parkinson's help group and listens avidly to the Jeremy Paxman podcast.

Her husband was 80 last month and has been marvellous, she says, but he has had a slipped disc and she has had to look after him!

I think I'll do what most of you have suggested and what I thought I should do anyway: phone her occasionally - say, every couple of weeks, and pop over now and again. Maybe we can go for walks when the weather warms up.

My late OH had it and my brother has it. Talk about it and support her. You cannot do that without talking about it. She has told you so does not want it to be a shameful secret.

My friend has Parkinson’s is on tablets but really seems fine walks well and no shakes or anything visible she’s about 4/5 years since diagnosis

A good friend of ours (DH’s school friend) was diagnosed 15 years ago. We, as a group of close friends, recognised his symptoms but he didn’t tell us until it was more obvious.

He’s lived his life as well as he could but is now in very advanced stages and it is very difficult for his wife to cope with . She has her own health issues. He really needs to go into a care home for both their sakes.
We will be meeting them today for our usual lunchtime get together , with all of us helping him along.

Keep regular contact with her and chat about other things. Be there for her and if she wants to talk about it , just listen and ask her what you can do to help.

It’s a cruel lottery of life! Could happen to any of us.

Everyone’s experience of Parkinson’s is different and your friend is still your friend so treat her as you always have while asking privately what would be most helpful. Being aware of what is causing problems for her is kind and supportive but she is still the person she has always been, and will need people who care about her.

My friend's mum has Parkinson's. Some days are better than others for her. It is progressive and can cause depression too. You are being a good friend indeed. Would she come to you for a cuppa? Some sufferers have difficulty with holding and filling kettles or cups. Ask her if you can come and visit but be prepared for her to cancel if she's having a bad day. Perhaps organise a regular trip out for coffee. Again, ask her if she wants to talk about it and be led by her. My friend's mum didn't want to share her symptoms with anyone but was happy if my friend updated me. She has reduced mobility in her face muscles so seems subdued. She also freezes and can't move her legs. She doesn't have the signature tremor but has other symptoms.