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#23

Hi @Luckygirl, @Rach28 and @A1YMO,

I hope you are all well.

I’ve been reading through your recent comments and you all seem to share similar sentiments regarding the lack of support you and your loved ones have received; therefore, I thought it would be best to respond to you all in this message.

It’s truly unfortunate that you all feel this way and although your queries differ, I think you’d all benefit from contacting our helpline service. Our helpline and local advisers can support anyone affected by Parkinson’s and can arrange for a Parkinson’s nurse to contact you to provide more help and support that is specific to your situation. @Luckygirl, if you let our advisers know the best time for a Parkinson’s nurse to get in contact with you then they’ll arrange this for you.

I hope you all find the above information useful.

Best wishes,
Reah


#24

Hiya Rach

You have lifted my spirits today ! So sorry to hear about your husband my hubby says the same about his 6 monthly visits he feels like a guinea pig where they just throw a few tablets at him here and there. He struggles everyday now can’t walk very far due to PD and his back problem can’t dress himself can’t even finish a hot meal because he can’t hold knife & fork properly and on top of that there is the dreaded siliva in his mouth which he can’t control resulting in dribbling. Lately he is very down depressed even worried about his future and what it holds. I do all I can help in anyway and try to boast his moral I say if you can’t do it his way then we will find another way ! We have recently won our appeal for PIP which took over a year to fight plus we had to fight that alone exept for the kind help of our local GP and at the last stage a very kind lady in the Citizen Advice. We did go to court alone and the judge threw it out after 10mins saying we shouldn’t have had to go through that and awarded my a husband the benefit. He now has a blue badge which will help him greatly as parking can be a challenge . I did eventually have contact with a local Parkinson’s advisor to which she agreed there is no help for younger people and no support groups even though she knows of younger people in this area that are suffering! Therefore my dear husband who is disappearing slowely in front of me every night is being made invisible by those professionals who should be helping us just because he is young !

Parkinson’s uk if you are reading this then please help the young they count as much as the older ones don’t let them disappear !

Thank you so much Rach and anyone else who is suffering I am here I will listen and help

Cardiff’s LuckyLady


#25

Hi your husband sounds the same as mine, he was suffering with dry mouth now has gone the other way. He too is really down at the moment he feels people are staring at him when we go any where and we too live in Cardiff. He don’t like to go to places where there are too many people are he is very conscious of himself .he has trouble getting dressed and getting in and out of bed even the quilt being to heavy for him to pull over himself .


#26

Hi ya, I’m really happy I’ve managed to lift your spirits as dealing with Parkinson’s is not easy. It’s a nightmare for anyone that has it but I think it’s especially difficult if you are diagnosed with it young. When you’re young you have ambitions and drive, PD completely changes the direction you were heading in. It’s not just the disease you have to deal with, it’s the way it invades your life. I love my husband very much and will do what I can for him, but we have to remember our lives have been impacted too. We are hurting just as much as them, people forget that. It’s horrible living with it and it’s even worse watching the person you love struggle on a daily basis.

On a positive note, I do appreciate that he is still here, alive and kicking. There is always someone out there worse off than yourself, I have to remind myself of that when I’m feeling down. We just have to take one day at a time and be grateful for all the things we do have in our lives.

My husband still has a great sense of humour which is extremely important in life. I want to share with you and your husband some of his jokes, my husband get’s through things by joking. He finds joking about his condition helps. I hope they make you laugh:

When the consultant asked my husband if he was working, he replied “no, but I’ve applied for a job, my husband said I don’t think I will get it though. He said think positive and my husband said alright, I’m positive I won’t get it. The consultant said why? What have you applied for? My husband’s reply was, it’s waiving the planes in at Newquay Airport”

Another quick joke from my husband: "I’m going to hold a charity disco for Parkinson’s, the first song starts with shaking all over, second is shake, rattle and roll and finally finishing with the hippy, hippy, shake.

Take care.


#27

Hiya Nettie

A fellow Cardiffian nice to hear from a local. Yes my husband is exactly the same recently our daughter got engaged she had a party in conservative club on rumney Hill you probably know it my husband hid in the corner in the dark afraid people who didn’t know him would stare and wouldn’t understand him when he spoke it took me a quite a while to encourage him out of it eventually he did and felt so much better. If people stare so what ! Life would be very boring if we were all the same and if they don’t like what they see then it’s them that need to look away! It’s a battle every day something challenges us but we find a way.

If you need to talk I’m here
Cardiff’s Luckygirl ( that’s what my husband calls me )


#28

Hiya Rach

Lol you are a star ! You’ve made us laugh and cry at the same time. Thank you so so much just talking to someone like this has made me and hopefully my husband feel not so alone .

Always here
Cardiff’s Luckygirl ( well that’s what my husband calls me )


#29

Hi @Luckygirl,

I hope all is well.

We appreciate how isolating and confusing Parkinson’s can be for the young. If you haven’t done so already, I would encourage you to look at our ‘Young people with Parkinson’s’ page on the Parkinson’s UK website for information on the help and support available to them. There’s information on how to connect with other young people with Parkinson’s along with a search option for support tailored to the individual.

I hope you find this information useful.

Best wishes,
Reah


#30

Hi Reah

I have looked at the young part of your website and can’t find any young support groups in Wales ? I also have spoke to our local advisor who confirmed there is no young support group ?

I await your reply
Cardiff Lucky girl


#31

Still awaiting a reply ??? Is anybody there ??


#32

hi luckygirl - only thing I can suggest is that you contact your PD nurse or phone the helpline and ask them the question and see if they can point you in the right direction. Sorry I can’t help any more than that, but it would be good if there was some help out there somewhere

Good luck Shefinn


#33

Hi @Luckygirl,

I hope all is well.

Apologies for my delayed response, I passed your query onto another colleague to look into support groups in Wales and was awaiting their response. Unfortunately, there are no support groups in Wales at the moment, however you are more than welcome to contact our helpline service to discuss other forms of support that’s available to your husband.

Please call 0808 800 0303 and one of our advisers will be able to assist you further with this. I have also contacted our Director of Support and Local Networks to see whether we have anything in the pipeline within your region and will keep you posted on her response.

I hope the information above has been useful.

Best regards,
Reah


#34

Hiya Shefinn

Thanks for your advice husband and I feeling pretty down at the moment with lack of support in wales but I won’t give up !


#35

Hiya Reah

Thanks for getting back and looking into this for us we are both feeling pretty down at the moment with lack of support in Wales for the younger PD sufferers. I have spoken to the local PD advisor and she knows plenty of young people in our area with PD but can’t bring us together which sounds crazy! Wales is population of over 3.1 million and I imagine there is quite a lot of younger PD sufferers here why does it seem your only interests in young PD sufferers are the English and Scottish sides of the UK ?? We desperately need support too sooner rather than later please !!

LuckyGirl


#36

Hi Annete, im keith recently diagnosed at 51 yrs old , just remind him he will never be alone with his condition Theres too many of us , just remind him that it isnt his fault, , like your husband i didnt ask for this , but i have PD But it doesnt own me
If i cant do things i work round them ,
Gob bless take care
Keith


#37

Hi @Luckygirl,

No problem at all and I definitely understand your frustration with the lack of support groups in Wales.

Please be rest assured that I have raised this with my wider team and I am currently awaiting their feedback on this.

I know I mentioned this before, but please do give our helpline service a call to explore other forms of support available to you and your husband.

Many thanks,
Reah


#38

Hi Rach
Im Keith im 51 yrs old and newly diagnosed i think your husband and myself are the same i try and joke about my condition because theres nothing else i can do about it , so i make the best

i have shaking hands too like your husband but i also developed a poxy stutter to , my kids call me awkwright from open all hours

ive lost a few friends when i made others aware , but realised they are friends i dont need
my close friends know they can pop jokes at my expense and it makes me feel normal
i make a lovely martini shaken not stired if your interested
love his choice of songs to
made me smile , even though i have a facial twitch too
but it wont get to me i will always be positive , lifes too short to be miserable
take care
god bless
keith


#39

Hi Keith,

I’m so sorry to hear you have been diagnosed with PD, especially at your age. It’s not easy but you will be ok. My husband also lost a few friends, it’s their lost. Unfortunately horrible things happen to people in life and if so called friends can’t deal with it they are not worth knowing.

It’s great that you have friends who make you laugh, after all you are the same person. PD does not define who you are, you are still you and people who really matter know this.

My husband and I loved your joke about the martini. My husband said “by the time you have finished pouring it and I’ve finished with it, there will be nothing left in the glass to drink”.

I’m glad we made you smile with the songs, you have to laugh and laughter is a fantastic tonic. I’m grateful my husband still has his sense of humour and I’m happy you have yours. It really does help, keep on joking, smiling and laughing. Your kids sound fab, they will keep you on your toes.

Your right about life being short and I love your attitude. You sound just like my husband, I think you two would get on well.

Take care Keith,
Rach


#40

Hi Rach. Thanks . My kids are fantastic but behind closed doors i know they are worried. With regards to the drinking , the martinis are 24 hrs as my hand never stops
Talking to people like yourself makes me realise the world aint such a bad place. I dont envey anyone who doesnt have PD. The more im treated as ordinary the better. Please keep the jokes coming . Ive vot alot but i grew up in the 70s and not all my jokes can be told . But i will try
You take care
Keep strong
God bless
Keith


#41

Hello … I am new to this forum, and not sure how it works, but here goes. I was diagnosed with Parkinson’s 8 years ago, and have coped, until recently quite well. Lately I have been struggling, and I wonder if the side effects of Sinemet are now more troubling than the Parkinsons’ ? I am very stiff and find walking difficult, What do readers of this forum think about medication?


#42

Hi @rosy,

A warm welcome to the forum.

If you’re looking for help and support by people that are also affected by Parkinson’s, then you are certainly in the right place. If you continue to experience side affects with your medication, please contact your GP and raise it with them. However, you may be interested to know that we have an entire section on the Parkinson’s UK website on ‘Side effects of Parkinson’s drug’ that you may find useful.

We also have a helpline service where you can speak to one of our trained advisers who can offer you further help and support. You can contact them on 0808 800 0303 and they’ll be happy to help you.

I hope you enjoy using the forum.

Best wishes,
Reah