About Introductions and personal stories

Hi Charlotte
I am waiting hopefully to be assessed as a suitable candidate for DBS. Your story has given me hope, as has another member today.

I hope that your problem with saliva is remedied soon. In Liverpool we have a community outreach occupational team who deliver speech therapy and methods to help with drooling and swallowing. Maybe you have the same service where you live so that you can get help. Contact your GP for a referral or get the contact number to self refer.

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Hi, I think that I initially posted in the incorrect topic , I’m sorry . Anyhow I’m 66 yrs old and female and not quite sure if I have PD or not.
I was diagnosed with MS ( Multiple Sclerosis ) in 1992 by one lesion which showed up on MRI. The rate of progression with that has been thankfully slow although I have not been able to walk a great distance for a few years and for long outings I use a mobility scooter and for shorter distances , a rollator . That is until we went into Lockdown in March 2020 when my walking deteriorated and I found increasing difficulty turning in bed and getting myself out of bed without my husband’s help . Because of difficulty accessing my MS team I finally had an MRI in September 2020 which showed up no abnormal activity relating to MS. Fast forward to this year and I developed Bradykinesia and finally got to see my Neurologist a month ago, who categorically told me what I suspect all along that this is not MS , neither is it idiopathic PD. She put me on a low dose of Madopar for three months and has referred me for a DAT scan.
At the moment I’m feeling confused as to whether you can have both MS and PD or whether I was misdiagnosed in the first place. As well as bradykinesia I’m also getting problems with my speech - my voice has become very weak and sometimes hoarse. My neurologist also noted dystonia in my right foot, and whilst I have no tremor in my arms or hands, fine motor coordination is almost zero when it comes to handwriting and handling small items such as buttons.
My apologies for such a lengthy posting , but many thanks for reading :slightly_smiling_face:

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Hi Ezinda, My name is Cenn (Ken) age 85 and new to this forum. I am also a forum member of BHF due to being diagnosed with Micro vascular angina which has grown worse over the years. During the summer of 2018 at keep fit classes that my instructor notice that I slowing down and a slight tremor in my left hand which over time affected the whole arm. The story to obtain a referral to see a Neurologist is too long for this post but I was finally diagnosed with Idiopathic Parkinson’s disease in July 2021. He prescribed the drug Sinemet but that has not curbed the tremor. Last week he has doubled up on the medication which I will begin this coming week. Let’s hope that gives me some relief. Thankfully I live in a block of flats with long corridors whereby during this cold weather I can still get in a 2 mile walk prior to breakfast but to control the tremor I walk with my hands behind my back. Unfortunately due to COVID the keep fit classes for us oldies have ceased.
I still swear that any exercise is beneficial to one’s aches or pains especially to us oldies. Yes , I do try and keep a positive outlook but it is frustrating sometimes. The slowing down and most stupid of all doing up buttons !!??
PS I was advised by my cardiologist nurse to keep a record of daily blood pressure , medication and above all movements !, Sound advice
Cenn

Hi, I’m Sefka, and I’m a Carer for my husband who was diagnosed with PD in 2018, though it’s likely he had it for some time before that. He’s 72 and I’m 61 years of age.
Now, here’s the tricky bit. HE is also MY Carer. I have lupus, rheumatoid arthritis, osteo arthritis, fibromyalgia, depression & anxiety, and PTSD.
I’m also as deaf as the proverbial post, and PD has made my already soft-spoken husband even more quietly-spoken, so conversations can be quite surreal in our home, as I try to figure out what he said in order to avoid asking him to repeat it for the 4th time! :laughing:
We have no other family to speak of, so we simply prop each other up as best we can.
We’re both retired; he retired in 2016 just because he chose to at that point (he was 66 then); I was medically retired back in 2001, before I met my husband. I should mention, it’s 2nd marriage for us both - or as we say, we’re recycled!
I do “therapeutic work” as a minder with a home-from-home dog-sitting service - looking after peoples’ dogs when they go on holiday etc. Basically it’s an alternative to putting the dog in kennels.
My husband helps me with that, and we do dog-walking together, me on my mobility buggy, him on foot.
It helps keep me sane, and the walking has to be good for my husband.

Hi I’m new to the forum. My journey has been less fraught than some of the forum posts I have read.

I struggled at first … hoping my symptoms would be down to something else like stress or a trapped nerve. I had tremor in right arm and leg, suddenly tiny handwriting, stiff right hand and arm and greatly reduced control of fine movement in my right hand. I also slept really poorly. I eventually mentioned my concerns to my GP on a visit. After a few quick tests he referred me to a Neurologist. Months went by and as lockdown descended I waited for the hospital appointment, my symptoms remained and seemed to worsen particularly with stress. When I finally saw the Consultant he quickly gave me an initial diagnosis of PD. Following a Dat-scan I was confirmed as having PD. A subsequent MRI ruled out other potential causes of the symptoms. As my work was being impacted eg typing and writing I opted to commence drug treatment. I initially started on Rasigilline tablets that didn’t seem to do much for me. I talked to my PD nurse and she advised that in line with the consultants recommendations I should also take levodopa tablets. The nurse emailed my GP and I started my Levodopa meds treatment a month ago and after a few days noticed a great change in my handwriting, typing and greatly reduced tremor in my right side. I’m feeling much more secure and on top of things now, although I’m nervous for what the future holds for me in terms of the progression of the disease. I know I have the support of my amazing wife and family and friends along with the PD nurses and Consultant. I keen to help with research studies and will be asking my neurologist what he recommends.

Hi Duncan,
We just wanted to say hello and welcome you to the forum. We’re inspired by your positive outlook and scientific mindset, and we think you’re going to settle in well among our lovely community. We encourage you to check out our website, where you can find loads of helpful information, like this information section for the newly diagnosed. We also have a team of knowledgeable and friendly advisers at our helpline, which you can reach at 0808 800 0303.
Again, welcome, and we wish you and yours the best.
Jason
Moderation Team

Hi Duncan,

Welcome to the forum. I have been diagnosed now for over a year although I am not on medication yet. I think that will come fairly soon but as I am now retired I don’t need to worry so much about the symptoms.

Like you the process of diagnosis took a very long time but when I got the results from the DaTScan it was quite a relief to know what was wrong with me. I have heard of and know personally people who have had PD for a very long time (over 10 years) and still lead entirely normal and active lives and continue in paid employment. Of course it affects everybody differently but PD by itself is not a cause for despair. Don’t worry about the future - whatever will be, will be - just think that for many years you should be able to continue doing the things that you want to do.

As for research I really wanted to get involved in this and still do but after trying to volunteer a couple of times and getting no response from the emails I sent to the names given on the PD UK research pages I have given up for now. I hope you have better luck

Mark

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Hi @MarkDD, :wave:t5:

I’ve sent you a private message so do respond when you can. :slightly_smiling_face:

Best wishes,
Reah