Parkinsons Disease

[imoanruby]

My mum was diagnosed last year and is still coming to terms with it, having ups and downs as to be expected..

Just wondered if anyone on here is in the same situation...it's very difficult..

[Caz10]

Have just seen this, not too late I hope. My dad recently diagnosed too. How is your mum doing?

[Stitchthis]

Steps forward....I've got PD. happy to discuss...you must be worried and upset but it's not the end of the world, honest really it's not

[mathanxiety]

ex FIL had this and lived with it for a long time. He didn't accept it very well and was very difficult as a patient as he was himself a neurosurgeon and used to being master of his own destiny all his life, never ill. He researched the disease exhaustively, all the treatment options -- his doctor spent a lot of time debating with him. He only had two bad years right at the end but a good 12 years up to that. exMIL had a much harder time as she couldn't deal with any sort of illness or disability and saw exFIL's illness as a personal affront to her.

[Likesshinythings]

Have you been in touch with Parkinsons UK? The helpline number is 08088000303 and they can put you in touch with local groups.
They also have publications available on their website //www.parkinsons.org.uk

[Stitchthis]

Get your parents to talk to their Parkinsons Nurse and/or consultant - they shouldl be able to get them access to a clinical psychologist who will help them work through the emotional aspects of the diagnosis. I cant reccommend it enough.

[mathanxiety]

I hate to say it but your mum should also have a will made and her affairs put in order, including power of attorney and end of life issues like life support all put in writing.

[Stitchthis]

Agreed. My dad had Alzheimer's - the PoA was a ggodsend

[Stitchthis]

Also, if you are interested I've just been asked to blog about PD here. Other good resources are the forum on the Parkinson's UK site and Wobbly Williams' site. Good luck.

[HokeyCokeyPigInaPokey]

Thank you, it had been such a long time since i had posted and there hadn't been any responses so i gave up!

My mum is only 56 and has been diagnosed for a year.

She has not coped very well, she's having some counselling and has been given anti depressants. In the last year the change has been dramatic and soul destroying to see. She has become a member of dignitas and has discussed ending her life when her quality if life diminishes.

I can't write much without getting very upset...

[HokeyCokeyPigInaPokey]

Caz10 how is your dad?

[HokeyCokeyPigInaPokey]

Stitch this - how are you doing?

Thanks for posting, i am going to have a look at your blog. I have looked at the Parkinsons uk site but not heard of wobbly williams so i'll have a look.

My mum trys as much as possible to ignore it until she has to go to the hospital and is forced to deal with it. She is not a talker, nor am i which doesn't help.

Thanks for posting.

[Caz10]

Good to read everyone's posts, stitch sorry you are having to deal with that.

My dad seems ok just now but I know they hide a lot from me. My mum seems a bit annoyed by the whole thing which annoys me, but again I don't know how much of the true picture I see.

OP I am sorry that your mums condition has deteriorated, what symptoms is she showing?

I am just very nervous about the future, at the moment his diagnosis has not affected us in any practical sense but I know it will at some point.

[HokeyCokeyPigInaPokey]

Mums gone from being a lively capable go get 'em 56 year old to looking a lot frailer. Her tremor in her right arm is very noticable, we don't talk about it and I try not to let her see that I notice it, but its hard because I don't want her to think I am not worried about it. She walks very differently and has fallen a few time, I don't like to leave her alone outside, if we have been shopping for example and we're going our seperate ways I worry terribly and always cry when I get home until I know she's ok. She is often breatless and finds talking on the phone quite hard work. I think when I saw her at the weekend she was dribbling a bit but trying to hide it. It's bloody horrible caz10 are you near your dad, do you see him often. Sorry if a bit rambly, never get to speak about it much my younger sister is not a coper so we don't talk about it much.

[Caz10]

Yes we live very near by but can go a good couple of weeks without seeing them. Sounds like a big difference is that your mum is on her own? Unless I am reading that wrongly? My mum is very capable for now so that makes me worry less about my dad. Actually when he was diagnosed there was almost some relief felt as he had become suddenly much frailer looking and I was concerned he had something terminal and wasn't telling us! So in a way he has declined physically already a bit, I actually think he has been suffering with Parkinson's for quite some time before his diagnosis. I can absolutely understand your worries I think i would be out of my mind if my dad was on his own.

[HokeyCokeyPigInaPokey]

No sorry I didn't explain that well, mum has my stepdad who is younger than her. I just worry when she is out and about on her own, that someone will bump into her and she will fall. Mum and stepdad took early retirement last year, this was supposed to be the good time for them! Is your dad still working? I think like your dad my mum had had it for a while we just hadn't realised. Do you have dcs? My eldest is 9 and we haven't told her although I can see that she sees the tremor and is not sure what to think. I don't know what to tell her.

[HokeyCokeyPigInaPokey]

I am bumping really as i hoped there might be some other people in the same situation as me. I suppose i should be glad really that there's not, or just not on here i guess.

[HazleNutt]

My dad was diagnosed a few months ago. We suspected for a while, the tremor in his hands was quite noticeable, he finally agreed to go to the doc. However, since he started his medication, he's a lot better and while he complains that it's sometimes difficult to operate the computer mouse, he lives a normal life, works, travels and plays tennis.

We have a family friend who has had Parkinsons for the past 20 years and is still fully functioning, so possibly thanks to that, my dad is luckily not that depressed either.

[agora1]

I'm not in the same position but do work with people with Parkinsons.

In regards to the drooling and speech issues a speech therapist can help. There are a couple of behaviour modification techniques for saliva control, essentially the person with PD becomes less aware of the saliva in their mouth and doesn't swallow as much as they should, SLTs introduce techniques which encourage them to swallow more.

For speech the gold standard is the Lee Silverman Voice Therapy (LSVT), lots of information online if you google. It's an intensive form of therapy designed to work on the speech system and it does work. It is actually better to start this form of therapy early rather than waiting for any possible deterioration of speech. Speech therapy is open referral so your mum does not need to go through consultants etc. to be referred, she can do it herself. Where I work there is a waiting list of a year.

[HokeyCokeyPigInAPokey]

Thank you agora1 i really appreciate your response, i will google LSVT this evening.

[agora1]

No problem, hope it's useful.

[Stitchthis]

I'm still here. Hope you're all ok. Can I make a plea for not Ignoring tremors etc? Acknowledging them is better - it means you don't worry about anyone worrying about you. Trust me.

Pd is shit. Definitely. But it's not the end. I hope your parents are coping. It takes time I was dx in 2008 and I'm still getting my head round it. But it's nothing to ignore, it's so all pervading. Talk about it rather than try to ignore it. Rant over

[wrinklygran]

It is best in my view to be up front with Parkinsons, everyone knows someone with it, and so if you admit that this it is why you are holding up the supermarket queue while you fish for change in youer purse, you will get a sympathetic response rather than an impatient one, and often an offer of help pushimg the trolley to your car.

I recommend trying the Expert Patient Programme (in our area it is called Living With Long Term Health Conditions) which is a 6-week, half a day a week free course for people with Long term conditions such as Parkinsons, MS, COPD etc., and their carers.

I did the course and subsquently trained to be a volunteer tutor. It helped me come to terms with my condition. I learned how to cope with the symptoms, deal with my medical team and communicate with carers.
All the participants felt physically better and more positive. Contact your NHS community health team or your GP may have details

[Stitchthis]

I'm due to see my pd nurse soon. I'll ask about that course. Sounds good. Thankyou.

[HokeyCokeyPigInAPokey]

My mum is quite a nervous person though wrinkly and wouldn't want to hold anyone up.

She is coming to terms with her diagnosis slowly but is still finding it very difficult 18 months on.

[Welshmamma]

Hi my mum was diagnosed about four years ago. She was the liveliest and busiest woman I know!
Last three years has slowed down so much! It's awful. She doesn't have typical Parkinson's, no tremor. She has more big movements. Which are bloody awful 😕 She gets really embarrassed and it's affected her emotionally. She used to have so many friends and have a busy life but this is no longer the case.
We go to aqua aerobics twice a week as she feels better for going. I think she is amazing, she is always exhausted as she sleeps little but is always pushing herself to keep doing stuff.
Not a nice disease ..... I feel like I'm losing my mum xx