Advice please?


#1
Hi am wondering if anyone can give me some advice please? My husband was diagnoised about 6 months ago. He is on sinemet 2 tabs x 3 times a day. He shakes a lot in his right hand and foot. Also very fast tremor in his bottom lip. He works outside quite a lot in his job. Yesterday after being outside he had a bad achey shoulder and could not settle to sleep last night.Tonight he came home and said he had been outside today and it was so cold he couldnt seem to get warm. As the day went on he said his whole right side was shaking and he couldnt stop his hand going into overdrive.Luckily he was on his own at the time as his colleagues are not aware he has PD....his HR do know. Is this a normal response to being overly cold? That your body seems to go into total shaking? He hasnt got a PD nurse so we have no one to ask for advice. Thank you .

#2
Hi. I've been diagnosed since May. I don't have a significant tremor but have noticed if I'm standing around in the cold my right arm and hand shake alot. Also if sitting in one position for too long I go as stiff as a board.

#3

Hi  I have had  Parky pal with me for nearly 8 yrs now, yes the cold puts me into overdrive I find I cannot  warm up after being outside.  I have since purchased thermal underwear and keep a thermal hat on, this helps.  A soak in the bath is the only way  I can get warm guess a hot shower would work too.   Try a muscle soak like radox or similiar the cold puts extra stress on the body try  not to worry most of us do not function well in the cold once warm back to "normal"  tremor always worse when body under pressure tired stressed but I find the cold is by far the most difficult to manage 


#4

hi BB, hope you don't mind but was wondering how are things with your hubby. i know it's only been a  short while but can emphasise with you both and if any way can help via forum just let me know.

JP


#5
Hi JP.... I read your posts constantly and you always make me smile .... Thankyou for asking about my other half...he plods in and has a hole he puts his head in about his PD.....refuses to admits the diagnosis or talk about it,even to me! He says "it doesnt affect you so why are you worried?".....it drives me mad at times...we have 3 adult Sons who dont mention it or ask how things are....so my Sons are as bad in their reluctance to accept the diagnosis. ......I struggle with it as my friends dont mention it as they are too" busy being busy"....so there is no one around to talk too. I work in a role of supporting others so struggle somedays with it all.....does that make any sense at all? My husband has just had his 2nd appt through to see his consultant and wonders why I want to go with him....is this just a man reaction to it all??? Thats not meant to be sexist in any way but as I have 3 Sons/Husband I have only ever been surrounded by male emotions. .......hope lifes treating you well JP and keep on posting and making me smile....

#6

Hi BB and yes i was the same with regards to consultants appointments. get in there, get what i need and carry on. didn't take my wife as start asking questions and the more you know the more you have to face it. I found with the consultant i kept it a more formal type appointment. it was the PD nurse who set  the ball rolling for me. from a male view any reason not to discuss problems is the first thing to grab hold of and use. I would be same if it was my father and only deal with it if he did. 

My consultant recommended the PD Nurse to me and first i thought i don't need to see her i can manage, let her help those worse. I see my PD Nurse on Monday so if you want i can ask her about your situation or you could try their online database thingy as i'm sure they will  have dealt with this before.

hope this is of some help BB and hope you get to consultants as well as sounds like you don't get a break from it some days

best wishes

JP


#7

Hi Babestation,

It's tough dealing with the elephant in the room scenario.  I know we have chatted in the past about the same issue.  

I chose to just get on with it , didn't mention it for 3 yrs and people left me alone and respected my way of dealing with the diagnosis basically what I call the denial stage where I changed from woman to ostrich.

Anyway, for the past 5 years have wanted others to acknowledge what I am feeling and at times need a hug and a shoulder to cry on.  but am faced this time with their denial as my symptoms are more obvious and I guess they cannot face what is happening to me.  So me woman them ostriches ! everywhere I go they are there with their long legs and heads buried in the sand.!

What helped me is acknowledging other people involved in my life would prefer to pretend its not happening and look for support outside the family .   I had counselling for the anger and frustration I felt at my new ostrich family and friends.

At the end of the sessions I was becoming more self reliant again, spoke to other people with a chronic illness got that hug I needed and had a good cry as well. I am obsessed with the song , human and the lyrics help me.  I have a few bad days but growing to accept the cute ostriches in my life, as just maybe like I did after that stage of denial and  became me again, they .

Sending you a cyber hug xx


#8

think i have to start to deal with peoples preference to not mentioning it TH especially when the shaking is bad. like yourself easy to choose not to mention it and save all the hassle I have been lucky that my family own and in laws have been open and accepting more than i did originally but friends and colleagues can be yeah yeah nice to see you but got to dash and hate to catch that poor you look in their eyes.  

i think BB TH is right that over time they will accept it especially as there is some one there who won't just sweep under carpet.

is it The Kilers - Human song or did you say Rag  and Bone man? I love playing music and the feeling i get from my anthem type songs. not sure which song i would choose singly lyrics wise as find so many to sing for slightest mood change. love indie music especially anthem type.

Sorry BB taking over your thread, my apologies but along with the humour music really just give me that push.

My best wishes and do try PD Nurse as your husband knows he has just has to deal with it.

JP


#9
Hello all.... Well what a shock today..definitely not the elephant in the room scenario moment....I bumped into a friend whom I havent seen since before my husbands diagnosis last year....he asked how we all were etc. When I told him about my husbands PD he said..."s**t.....thats not good,hows things going etc etc"....he then grabbed me and gave me a massive hug!! Straight to the point. Which was what I need no pussy footing about or ignoring it all...it was all out in the open!! He knows about PD so there was no embarrassment about anything,he was more concerned about how we both were,working,driving etc etc.....and because of the way he was so open we could have a very adult conversation about everything......and there wasnt a tear in sight from me.....wish all friends and family could be as open and straight about PD......

#10

Hi BB and glad to hear it. the wheels are in motion as things like that tend not to stay stum for long. When i revealed i had PD 2 weeks later I bumped into some one I used to work with and they looked shocked to see me walking dog. apparently i was wheel chair bound just not the same. keep us up to date

best wishes

JP


#11

Yeah !  so pleased one down all hopefully all the ostriches will follow.  support is there and if not go looking for it    good luck xx