I am new to both Parkinson's & this forum so apologies if this topic has been covered in a previous post.
My Mum was diagnosed about 18 months ago & we are struggling to be honest. Unfortunately ( for various reasons) we have been left without a specialist Parkinson's nurse & Mum's GP is not the best I have encountered. So I'm hoping someone out there can help. It's the anxiety that seems to be causing most problems. Mum has seen GP relating to this & was on a course of anti- depressants which helped tpo a certain degree, when she seemed at rock bottom. However, some days she is literally crippled with anxiety & in 2 years has gone from a happy, outgoing lady who was a member of various societies (knitting, crafting etc) she volunteered for various community activities &had many friends. These days she doesn't want to see people, cries constantly & even a trip to her favourite shop (M&S where she worked for 30 yrs) has become a huge ordeal.I live 30 miles away & also work & so keep in touch by phone a lot. Some days she won't even talk to me .Most of her care is provided by my 80 yr old father who is not in the best health & they have a lady who helps with the cleaning & a gardener.
It's the not knowing how she will be from day to day that we struggle with. The GP is very reluctant to change any medication but has given her a very low dose of Diazepam with a warning that it's highly addictive ! This has made Mum reluctant to take them, although they do help a little if we can persuade her.
Does anyone have any advice for us as like I say we are struggling to cope & I am now feeling very stressed & anxious myself.
Firstly, please do phone the helpline above. They can advise on every aspect of Parkinsons.
You do not mention a neurologist. Ideally your specialist should be a neuro.specialist in movement disorders. Most GP's would admit to knowing very little about the management of PD.. Anxiety is very common in Parkinsons and sometimes pre-dates the diagnosis. Most people, at whatever age, are very shocked at the PD diagnosis and your mother may be sparing you the worst of her fears especially if like me the only person I had known with PD was my mother-in-law years ago when the there was no treatment. Today, seven years from diagnosis and now 76, most people would not know I had PD.
Have a look at the ...You tube link at the bottom of this page. Most of the speakers are people with Parkinsons.
Thanks Eileen I will have a look & phone helpline.
Very best wishes x
Hi my wife is asking on my behalf. I have had PD for 15 years my biggest problem now and has been for a long while is the pain when coming out of my sinnamet tablets my neck shoulders lock the speed of my shaking is terrific does anyone have any idea's of a way to ease it.no one seems to be able to advise us first time we have used this site
I'm so sorry to read about your pain and tremors. There might be some other forum users who have a similar experience and have some advice for you.
Please remember you are welcome to give us a ring on 0808 800 0303 to speak to one of our nurses about this.
Best wishes to both of you,
Ilona (Moderation Team).
I wake up with anxiety also but I know the racing thoughts have more to do with my dopamine level then reality of my thoughts.So I have a laugh first at the revollting development and maybe get up and take a pill,C/L,LOL
Im 68 now and remind myself I have much to look forward to regarldless of parkinson.Getting up and moving my muscles puts much of the cheer back ,I know many friends who are muchworse off even some who have died.
Yes I m sure im somewhat depressed as everyone with PD also is but I know I can muster on and wear my happy face and do good before my time comes.
My best help of course is from Dr.Abraham Low founder of recovery inc.He is always there for me and anyone else ready to listen.
Hope your friend gets well it can be done,PD realy is a much better fate than other disease like cancer.
Thanks John I love your positive outlook I hope that in time my Mum will start to feel like you
i get pain also wearing of c/l
sometimes can be just a twinge or it can be a hard shock.I then starts my body rocking with arm jerking shoulders shrugs .I guess be have to avoid waiting to long between c/l doses .Taking to much also brings on the involuntary movements.
I am about to try apro infusion pump is anyone already using one and can tell me how it's working for them. I am typing this on behalf of my husband
Hello Arnolds Lady
Are referring to the Ddopa pump or another make, I my case a visit from Bridgett my brilliant Dopa Nurse suggested a change of the tubing carrying the Lev/carbidopa gell to my small intestine , now I know that i was due a intermediate 10000ml service and MOT which I passed but I hoped that our planet would be atomised by massive asteroids before I needed this work doing, the reason is this ANXIETY and SEVERE BACK PAIN when I lie on my back which I must do allowing the surgeon access to my Abdommenumenum, oh b???? R I can never spell abdomen, in other words Im bottling it or wimping it , the date has not been set yet though all criteria pertaining are met , my Dopa Nurse Bridget has placed bets- the op will be NOVEMBER THE Ahhhhh oh erm sorry I forget, now as you see its up to me how anxieteee IS MANAGED Lady Arnold and though my brain is damaged by the OLD ENEMEEE PARKEE I ENJOY writing silly poems or perhaps POETRYEEE rhymes better especiallyeee if its sill eeeeeeeeeeee, so there you have it my forum buddy I hope my lighthearted response does not imply I am not taking the problems all who have contributed to this thread seriouslyeee far from it my friends , you know how deep sea divers get te bends well thats not how this prose ends it will surface again elsewhere, possibly in the area of comfy chairs sssSO THERE
Appologies to Lady J of Grey and all other poetrians
My appologies having not read your post correctly I see its a different pump to yours sorry,, im a bit of a DUNDERHEED AT times, but not always
Laughter is indeed often the best medicine… keep a ready supply of comedy about to draw on in times of anxiety…