Hello


#1
Hi all
I am new to the forum. I feel I have come to the point where I need to talk to others that may be experiencing the same thing.

My OH was diagnosed with parkinsons in January 2013. He is only 40. We have 3 kids of 5 years and under.

I am finding lots of things difficult, the relationship with my OH is very hard at times, I feel at times that I am taking on so much with running the house, kids, work (I now work full time) and OH, and also other peoples reaction to the fact that my OH has parkinsons. I have come to realise our friends may not be quite as supportive as I thought they maybe. And some peoples comments at times are incredible. I have even had people say to me 'oh goodnes he is bad, will he be in a wheelchair soon'. Things like this are very hurtful and I can;t believe how insensitive some people are.

Anyway, sorry for the dumping of loads of things. I have a lot going round my head at the moment, and feel I am trying to balance many plates.

#2
Welcome Baker Girl

You have come to the right place to dump things, join the gang!

I am a pwp in my sixties, I'm sure you will get responses soon from others in a similar situation to yours.
Best wishes

#3
the world will never have a shortage of d*ckheads. ignore them. hope you get something out of this forum.

#4
Thank you both for your replies. :grin:

#5
Hello Baker Girl and welcome.
Sorry to hear about your husband. You are doing it tough and it is disappointing that your friends are not more supportive.

I think a lot of people do not know what PD is (I didn’t). And therefore they may not know how to react. Some of my siblings never mention it!!

How is your husband reacting to the medication? Is it helping his symptoms? Sometimes it takes a while to stabilise, or it might need to be adjusted.

Good luck and don’t hesitate to come back with any questions.

#6
That is one of mine and his frustrations. Is that he is so far not getting any benefit from the meds.

He is on Requip 16 mg per day. It feels like it is taking ages for them to increase the dose, seeing as he started the meds late Jan time. Is it normal for it to be so slow?

#7
I was diagnosed in Jan too, but am 56 and seem to have a normal case of PD. I was given Sifrol ER (pramipexole slow release) and saw the neurologist 3 times in 3 months (Jan, Feb, Mar). He upped the dose each time, and at the last time I drew a line and have been taking a bit less.

16mg sounds like a lot. Other people will chime in. Are they sure he has PD? Does he have other conditions that may be complicating his treatment?

#8
Yes, I should have mentioned. He was diagnosed with dystonia about a year before. Do you think this would make a difference?

Glad to hear you have been getting a lot of consistant help.

#9
Yes, I think it would make a lot of difference. Here’s the first link I googled. http://www.ncbi.nlm.nih.gov/pubmed/11489676

A lady at our US PD support group had dystonia but not PD. She took clonazepam for it. What was your husband prescribed for his dystonia?

My neurologist knew I had only 3 months to be monitored before I went back to the States, so perhaps that was why it was so frequent. I see him again next month, seeing I’m back in Australia for a few weeks.

#10
The only thing he has for the dystonia are botox injections, into the neck muscle. His is cervical dystonia.

#11
Hello baker girl. I have had the same comments given to me , it is the last thing you want to hear isn't it .

It is insensitive and thoughtless . try and put it down to ignorance . We all try to keep upbeat don't we , Not easy of course ..

#12
Sheryll,

That is really interesting, thank you. Since his diagnosis of PD we have thought of it as a seperate issue, which it can be. However, when OH and me saw a Professor in London he advised Levodopa treatment which I can see from looking further into dystonia-parkinsonism can treat both. Now we are back to the local neurologist they are treating him with the Requip for the PD and then botox for the dystonia.

I need to ask the neurologist why this has been the way they have decided to treat OH.

I feel our lives are on hold and it is so frustrating and upsetting to see OH go through this.

#13
Thanks Johnnie

Yes it can be hard to stay strong all the time. I have to say when the comment was made about the wheel chair it really took me back and I really didn't know what to say. Although it may have passed through my mind, as I am not really sure what to expect over the years to come, and I am not sure if I am ready to know. When someone says it, it then almost becomes real.

#14
Hi Baker Girl, I recall the lady with dystonia saying she had botox injections into her voicebox, which is where it first manifested itself. That didn’t help her dystonia.

#15
Hi Baker Girl.

16mg of Requip after being diagnosed 6 months ago seems excessive. OH was on 24 mg after 2 years, considered maximum dose, and when we researched another consultant and consulted them, they immediately reduced that dosage, over time, to 6mg and Levodopa.

Even Levodopa was not prescribed until a long time after initial diagnosis and in hindsight we would have desisted on any drugs in the first few years but took what we considered expert advice at the time.

In hindsight we would have delayed medication for as long as symptoms were not problematic, they were not when first diagnosed;OH was diagnosed aged 47 and maybe, if we had delayed meds. they would have more efficacy now, 15 years later.

#16
yes Baker Girl , If anyone asks how we are I usually say fine , but I do pretend or lie a lot of course !!!! only joking ,

Although I do get frustrated because I can't fix things for him to feel better and it upsets me , I try not to and stay upbeat otherwise it only makes you feel worse . I don't like anyone feeling sorry for me either .

I use to look after my mother and tell her I will fix it Mum , that is until she had a very big stroke and I gently had to tell her I am so sorry I can't fix it for you anymore . She knew exactly what I meant !

#17
Hi baker girl, I'm replying to your post on 25th july 2013 8:34, regarding peoples reactions to your OH's PD, I'm sorry if I'm a little slow at replying but this caught my eye.
I've had PD neraly 20 yrs and had some pretty awful and unkind things said to me,I really found out who my true friends were after my diagnosis and I really had my eyes opened thats for sure, but what I found more hurtfull was the reaction of some family... this blew me away.

I've had people say to me "Oh you'll be Ok soon!!"... thinking that PD is curable, and I've had the wheelchair one too... I was in a cafe in town, a man nearby shouted "What are you shaking for?... have you had your jabs yet?"... man was smoking something dodgy and he assumed I was like him, two women who were sat at the next table gave me such I look as they heard him... so I told them that what I had was not self-inflicted like the gobby man... they apologised...

You are better off without ignorant people wether they be so called friends or even family. I dont' seek anyones pity or sympathy but I don't think a little bit of compassion & consideration is too much to expect.

I hope you & your OH are having a good day....

Dirky :wink: