Hi


#1

Hi, 

3 years after hubby's dx I have finally taken the plunge and joined. 

He had symptoms since 2011 and doesn't respond well to new meds which has limited treatment options for him.  Currently he is on 250mg of madopar 4x a day.  Recently he has developed an exceptionally short temper, mostly with me but increasingly with our 6 and 7 year old children.  His PD is compounded  by spinal problems and I know it is frustrating for him the restrictions that these put on his life, but I'm finding it harder and harder to deal with the unpredictability of his mood.  I daren't talk to him about it and he has refused support from the PD nurse so am stuck. 

I guess that's the reason why I'm here, to have people to talk to and will understand.  

Sorry 

10kmk42


#2

Hi there


You are in a very difficult situation, i have PD but have always thought it is so difficult for those around you watch you go through the motions of this disease. There are a lot of people on here who will relate to this and be able to share their experiences and advice. Maybe the knowledge that you are not the only one could help slightly. Do you go with your husband when he sees his consultant?  voicing your concerns to him or her  may help you and possibly your husband doesn't notice his behaviour as being associated with PD.


The other concern which must be a problem is how dad is with children, their understanding is so much simpler so must be upsetting to see.

There is probably someone on here or from the moderation team who has better advice but if it were me i would seek advice from the consultant looking after your husband.


good luck, and stay with this forum if not just to talk and get your concerns out we have a good old natter  too.


Barnowl1


#3

Hi 10k, 

Welcome to the online community, I know there will be some members that can relate to everything you have said. Parkinson's affects the whole family and from what you've said it has had a huge impact on all of you. 

Have you ever spoken to a Parkinson's nurse yourself? You can reach a Parkinson's nurse via our helpline. Contact the team at 0808 800 0303 or hello@parkinsons.org.uk. They'll be able to answer your questions and concerns as well as offer some advice on how to communicate these to your husband. 

You can also read our information booklet for carers and people living with Parkinson's, I understand you may not identify as a carer but it could be useful. You can download it here 

We also provide a book for children who have a parent with Parkinson's, it's free and you can find out more about it here

I hope this helps, please get in touch with us when you need us, we're here for you and everyone affected by Parkinson's. 

Kat

 

 


#4
Hello, This is my first post, I understand your feeling as a wife and at the same time carer, I' ve been taking care of my fiance (who is 56y/o)on and off for 10 years since he was diagnose of PD, he suffered a lot of different kinds of side effects from different kind of medicines given to him by his Neurologist, like having visual hallucination, unable to stand on his on, furthermore needs assistance in all his daily activities until now, he even end up in ICU twice coz of difficulty in breathing in related to water retention and swelling legs/ edema..He ever been prescribed and tried Stalevo,trihexiphenidyl,selegiline, Amantadine, Madopar capsule, he also have meds for diabetes, for blood pressure and cholesterol, also sleeping pills was given to him. He was very I'll. He is a Singaporean and I am a Filipino, as I said earlier i 've been looking after him only if I ' m in Singapore, I can only stays with him for 1- 2 months following the law as for tourist visa.. 2 years ago when I decided to focus on him, i gave up my job since no one in his own family who is willing to look after him, I decided to bring him here in the Philippines, I carry along all the prescriptions for Parkinson which is Madopar 125mg capsules 3x/day,requip 1 mg 3x / day and Neupropatch 4mg, and also for his blood pressure and diabetes medicine, he suffered from extreme weakness , fatigability and pain all over his body, I believe these are all side effects of medication,I ever brought him to a herbalist/ faith healer. Now he is taking Madopar 125mg tab 3x/day , Requip 1mg 3x/day and Madopar HBS once before going to bed together with 1000mg of vitamin C. GODDGRACE I MADE HIM SMILE. PATIENCE & BE STRONG MY DEAR.

#5

Hi all, 

Thanks for your messages. 

I have the my dad has Parkinsons  book for the girls, we read it often, not sure how much they take in though.  Their school wants to get them assessed  as young carers, but I keep them away from that aspect of family life so hesitant about it (and hubby hit the roof when he found out).   This is all part and parcel of the whole experience and we just have to adapt to it I guess. 


#6

Hi again 10k,


Maybe it is you that needs the help at the moment, Your husband is possibly worried about all of you having to cope with his Parkinsons. You say he hit the roof when you mentioned the children being assessed for young carers, he is their father and maybe he feels the role reversal too much. Natural caring and understanding sounds like it is present within your family anyway. There is no rule book or guidelines to follow but if the worry of the whole situation is overtaking his ability to accept and enjoy his life the way it is then talking frankly about it would be my option. Speaking as a Parkinsons sufferer myself i realise that although one member of the family can have the disease

all of the family is affected, you're all going through it. 


I am extremely independent and i am left to get on with everyday life on my own in my own way but when on occasions i need help i ask for it. I can only say as i see it on here and as having PD myself. I don't have all the answers, this is a personal journey for your family but it is a journey that can have some good in it as well as the bad.


I wish you happier times


Barnowl1


#7

Hi 10K

 

I am carer for my hubby and I am lucky he lets me take care of his meds and I can and do phone parkinsons nurse or neurologist or GP surgery if something needs changing.

Parkinsons UK has support groups everywhere and maybe you need to look for young onset parkinsons they have their own website and support to help you with your kids etc.

But for you also ask or join yur local carers support group. http://www.carersuk.org/ is their website. They have local groups and I have signed up to them too. They offer services, like coming to your house or a coffee shop for a chat! Just for you!

Loads of help out there for you and your children until your husband is ready to listen.

Take care


#8

Hi 10k,

I was diagnosed with PD about 6 months ago so am quite new to the illness.  I found that once I had the diagnosis my hubbie wanted to take over a lot of things that I was quite capable of doing myself, which left me feeling useless and lacking in confidence, which in turn mad me lose my temper with him on a number of occasions. However, he came to see my PD nurse with me and I was able to explain how I felt about this.  The PD nurse, in particular, was very helpful in helping us through this period.  Even though your hubbie may not want to talk to the PD Nurse you may be able to get some coping tips off her yourself.

Good luck

Sue