Hi, I’m 64 and just been diagnosed after a year of shoulder and upper arm pain being the main symptom. I actually teach Tai Chi and Qigong which are excellent for Parkinson’s, and have had folk with PD come to my classes.
I’m waiting to hear from my GP about medication which my consultant told me would improve my movement difficulties. I’m still coming to terms with it and my greatest concern/fear is for the side effects of the medication. If anyone would like to share their experience or give advice or reassurance I’d be very grateful. I don’t like the sound of hallucinations or obsessive behaviour. Do they occur with higher doses of the medication further down the line, or sooner? Are they symptoms that would occur anyway if the condition went untreated? I’m looking forward to hearing from fellow sufferers.
Hi Lesley59 there are so many medications out there even if one doe’s not suit me, you might have any side affects, I leave it to my nurse. I was diagnosed in 2010 and have been fine till last year.
In the early stages my medication was changed every time I went. Never had obsessive Behaviour, but one or two my friends have. You will find that if you do have a problem you should have a PD nurse who can speak to, also Parkinson’s UK will listen they are always there if need them. When you say about Hallucinations there is a condition that effects most PD people it’s called REM Rapid Eye Movment. This is what happens when you go to sleep When dreaming normaly your body (for want of a better word) freeze’s but will REM if you are chasing some one you live out that dream and you chase them. See my post on the REM this explain’s more If you find that you are living your dream Please Don seek help. I went to Tai Chi classes for10 years just finished Fan Form when I just could not go on as it was my balance , allso had to give up Line dancing Green bowls and my long waiks in Derbyshire, The good news is the disease isa slowprogressive disease[quote=“Lesley59, post:1, topic:39941, full:true”]
Hi, I’m 64 and just been diagnosed after a year of shoulder and upper arm pain being the main symptom. I actually teach Tai Chi and Qigong which are excellent for Parkinson’s, and have had folk with PD come to my classes.
I’m waiting to hear from my GP about medication which my consultant told me would improve my movement difficulties. I’m still coming to terms with it and my greatest concern/fear is for the side effects of the medication. If anyone would like to share their experience or give advice or reassurance I’d be very grateful. I don’t like the sound of hallucinations or obsessive behaviour. Do they occur with higher doses of the medication further down the line, or sooner? Are they symptoms that would occur anyway if the condition went untreated? I’m looking forward to hearing from fellow sufferers.
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Thanks Mary, a pity you couldn’t carry on with your Tai Chi. I have had to stop taking classes but hope the meds will allow me to start up again. I’ve only seen the specialist so far and am waiting to start medication and see the PD nurse. I’m also on meds for a heart attack some years ago so wonder if that will make a difference. I’ll look for your post on REM.
Hi Lesley
I was diagnosed in 2017. Similar “tightening” or “rigidity” in left arm, not swinging arm also. I have taken all medication as suggested by my consultant . I also started tai chi which I enjoy. I have had no side effects and try to be positive . We are all different…good luck
Karen
Hello Lesley59
My husband was diagnosed 13 years ago and receiving his first doses of sinemet was wonderful it was like having his old self back for a good number of years. He has been fortunate and suffered little side effects from most of his medications, some nausea sometimes when dosages have been changed. In more recent years he has experienced some hallucinations which he understands and they do not bother/upset him. I understand hallucinations can come with or without medications. However he has had orthopeadic issues which incurred surgeries, we quickly discovered through these that he cannot tolerate morphine it gives him extreme hallucinations.
A bonus to teach TaiChi which is greatly recommended for Parkinsons sufferers, I hope it holds you in good stead.
Two things to consider at this early stage you can choose where you receive your neurological Parkinsons support from. We researched and asked our GP to refer my husband to London Kings College as a hospital of excellence in the treatment of Parkinsons. You’re going to be seeing them for the rest of your life make sure you are happy.
2nd and probably the last on your mind at the moment. Before you reach state pension age apply for Disability Living Allowance or PIP (The Parkinsons UK Helpline have help & information to assist you). It is important you do this sooner rather than later, you cannot claim after you reach state pension age. The importance is this is the only benefit that gives you access to the car mobility scheme where you can use some of the benefit to lease an appropriate car for you. Whilst this might at this stage seem totally unnecessary, it can be very important. We discovered too late, my husband being post retirement age could not apply and finding himself a full time wheelchair user (c/o Sepsis not Parkinson’s) having to purchase a wheelchair accessible vehicle, not easy to raise large funds aged 80 to achieve this. Excuse me if this seems inappropriate- I feel on a mission to help people not find themselves in the situation we have.
In the meantime I hope the medication is successful with you , I do recall it took a few return hospital visits to get my husband’s dosage right. All the best Jane (aka Plus1)
Hi Lesley
I’m also in Newcastle and diagnosed 10 months ago I have had no issues with side effects from drugs
I’m just getting my head around the fact that I have Parkinson’s now and have got my sense of humour back and embracing the positive side of things
I’ve just joined Pure Gym free in Newcastle they were excellent responding to my email request
Good luck
Hi Lesley just sent message to Tot and hopefully Forum staff the Gove Dept are reviewing the AA to come in line with Pips, if you check Gov web sight to can read all,
Hi @Plus1 If you are currently at King’s you might want to consider transferring to the National Hospital for Neurology and Neurosurgery, Queens Square - part of UCLH. They do a lot of the PD research there and even have their own Brain Bank.
Hi @Lesley59 I am on the Management Team for a 5 year piece of PD research called PriDem which is on the care of PD in Primary Care. The research has its HQ at the Centre for Ageing on the old Newcastle General Hospital site.
Hi Douglas
Yes my husband has already signed his brain away to the brain bank. Kings do a fair amount of research too I believe some in tandem with UCL, Oxford and others. I think most of the research projects are linked these days. Certainly a database exists of current research projects that you can join if you want yo and are able. Both my husband and I have participated in a fair number over the years.
Hi Plus 1 if I were you look into why your carers allowance was stopped that little amount of money doe’s help. Why not take a look at Parkinson’s UK site at the page what tells you about allowance’s.
