About Introductions and personal stories


#42

Hello
I’m new to this forum…I was diagnosed with PD 3 years ago at the age of 57, my Neurologist said I would have had it for 4 or 5 years already. The diagnosis came a couple of days after I’d left my lovely home of 30 years - I was in the process of divorcing my husband, what a nightmare time it was - I was shellshocked and couldn’t believe this was happening - I am still in denial. I was lucky to fall in love again a few months later but horrified and embarrassed at having to tell my ‘new man’ that I had this incurable ‘old person’s’ disease - I still do my best to hide it from him. I do exercises every day to try and keep supple, pace myself because of the exhaustion and take my medication (Sinemet and Pramipexole), but it is steadily progressing.
My Grandad had this disease in the 1970’s, it was terrible having to watch him suffer and I dread having to go through that. Sorry to be so negative but sometimes I find it hard to stay positive…


#43

Hi @milltowngirl,

A warm welcome to the forum.

It sounds like you’ve had a tough couple of years which couldn’t have been have easy for you. It’s great that you’ve found love again but if you need support with dealing with your divorce, it might be worth revisiting one of our threads on the forum which has a lot of great advice on how to cope divorce and Parkinson’s. You can find this here, Divorce and PD.

I’m sure you’ll receive some warm welcomes from other members in no time, but feel free to explore the thread above if you think it’ll be useful in the meantime.

Best wishes,
Reah


#44

Hi All

Just joined the forum so though I’d share my experiences with you. I haven’t had a diagnosis yet but am sure it’s just around the corner with a visit to neurologist next week

I’m a 57 year old male that has always been very active. Ex military, played county Rugby and was a regional athlete so have been fit all my life. When in my early 20’s, I suffered a groin & lower back rugby injury which I didn’t rest enough that has come back to haunt me in later life with bouts of siactica and posture problems. Whilst the problems with this have been real and treatable, denial I guess has seen me use this an excuse for not accepting where I am today!!

About a year ago my wife noticed a tremor in my leg when at a family funeral which we put down to the emotion at the time. However, within the next few weeks I awoke to ‘internal tremors’ and more leg tremors when anxious or stressed. A visit to a consultant last August diagnosed Essential Tremor (which my Father had) but other symptoms now evident, albeit intermittent, have led me to believe me otherwise:

Tremor at rest in left leg
Left foot drop & walking problems
Unable to wriggles toes
Leg cramps
Softened voice

Stress and anxiety bring on the symptoms but most of the time I seem to be okay at the moment so am hoping to have caught this early on.

I’d be interested to here any of your thoughts

Cheers in advance
Rick


#45

Hello, you can call me Queenie. I was diagnosed with PD seven years ago. I have had some challenges but have continued with normal activities, with just a few more rest periods! I am 63years old and lucky to be retired. I’m a very optimistic individual but since being diagnosed wit a rare form of guillian barre my optimism is waining.i gets kick out of the people that tell me they could get hit by a busanyday, what they don’t understand is that I have already been hit by the bus! And otjust once but twice. I was looking for a place to go where I didn’t have to explain everything. So,as I went looking, I found you!


#46

Hi Queenie ,Welcome to the forum , where have you been all this time .(I don’t need an answer!):grin:
I confess I will need to look up guillian barre (sorry to show my ignorance ) :flushed:
Fancy, waiting all this time for a bus, then two come along together :stuck_out_tongue_winking_eye:
Now Queenie not all my posts are like this, please dont think im am treating your condition lightly, you obviously have a lot to contend with my only wish is to restore that positivity and make you smile . LOL.
Thats enough from me , im off before the “fun police come”.
Hope we can talk soon (without the nonsense)
Best wishes,
Mal.


#47

Hi there

I have had PD for 5 years and a few years previously I had Guillain Barre.which was the most frightening thing ever.

Speak soon
Babs x


#48

I have been diagnosed with pure sensory GBS which is even more rare. It is kicking my butt some days, and between that, PD and meds, it has got me on the ropes! I’m a fighter and I know I will fight back but right now I just want to whimper a little bit while I lick my wounds!


#49

Hello, I’m Sue and my husband has recently been diagnosed and we are just getting used to everything. He refuses to speak about it and has ordered me not to tell anyone. He has only a light tremor, but his mental facilities are more affected. He is vague, bad tempered, forgetful and ignores me most of the time. He flatly refused to visit our family and grandchildren. I knew there was something wrong as he seemed to change over the last two years. I am so sad for him as he never smiles or laughs anymore and we are becoming very isolated.
This forum is so lovely…very reassuring and helpful.


#50

Hi @Mrsc58,

A warm welcome to the forum.

I’m really sorry to hear that your husband has been having a hard time following his diagnosis. People with Parkinson’s can experience a range of mental health issues alongside their physical symptoms so your husband is not alone. However, there is a lot of help and support available to your husband.

If your husband needs help for a mental health issue, or if you have any concerns about your emotional wellbeing, you should first speak to a medical professional, such as your GP, specialist or Parkinson’s nurse. They will be able to offer you advice based on your own personal circumstances. There’s more info on this here - https://www.parkinsons.org.uk/information-and-support/parkinsons-and-mental-health

We also have a ‘newly diagnosed’ page on our website that has of information about our support service and local groups which may be helpful to you and your husband. You can find more info on this here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

Lastly, if you would like to have a chat about this with someone about this in more detail, our helpline is available to you on 0808 800 0303, Monday-Friday: 9am-7pm or you can email hello@parkinsons.org.uk.

Best wishes,
Reah - Forum Community Manager


#51

Hi Ckendzierski

I know wat you are saying not not sure where the worse place to fall, I Have fallen down stairs i the road and gardens and even off the dinner chair during dinner.itosso hard, my fight is with sleep and drooling right now, Well I wish you all the best and try and keep safe.

Kind regards
Raz


#52

Hi
My name is Janee, just found out on Monday that I have PD. Not a total surprise but still takes some getting used to the fact that this is what’s wrong. Not just my age as my GP has said! I’m 61 by the way. I’m married and my husband is being supportive, I don’t think he’s quite grasped the full implications of this but it takes time.
I feel quite positive as life throws stuff at us to deal with and this is now my pile of poo to get to grips with. Knowing what’s wrong feels powerful, gives to strength to find solutions and move on, I’m currently learning to use the mouse with my left hand as my right hand shakes and it’s quite difficult to hit those little boxes, seem to be going well and far less frustrating
Telling people is my first objective and that’s going ok. Dealing with work is my next issue, I have a variety of jobs, mainly work with my husband, completing all the admin associated with our business, that’s not a problem as it can fit in with the weather and how I’m feeling. My other jobs are more physical and I am struggling with these but I’m not altogether sure if it’s being made worse by the weather? So my plan is to speak to my employers reduce my hours for now and take some time out to assess.


#53

Hi Janee, welcome to the forum. Your positive outlook will be a great asset on your ‘journey’ with pd.
You’ll go through the gamut of emotions but keep interacting with people and exercise in some form.
Look after yourself, contact a pd nurse if you can. Great source of info and support.


#54

Hi Jcszrh

Firstly welcome tot he forum, I have found this forum very helpful, and everyone are very surportive . Well you sound like you are a strong women and that you are very positive, you need to stay like that and as this Parkinson road is very emotional at times and you will need that to help you though. Also like Divine1 has said you get in touch with your Parkinson nurse as they will help you a lot. All the best and take care of your self .

Kind regards
Raz.


#55

Hi! My name is Brenda. I am 51 and was diagnosed 8 years ago but had symptoms for several years…and I was misdiagnosed twice before finally being told I had PD. Mine is genetic on my mother’s side of the family. Grandfather and several aunts and uncles had it while I was growing up. Also had an aunt who lived with us and my sister and I looked after her whenever mother went out. I did not understand what she was going through at the time but when I think back and remember the expressions on her face, I now know exactly what she was thinking and going through. If only I had known then how much easier her life would have been!

This is a cruel disease at worst and frustrating at best buy I am grateful that when my medication kicks in I can walk, talk, dance and sing practically like normal. My symptoms have progressed. The off periods are much worse than before but at least there are options available. I was offered DBS and am undergoing tests to see if I am suitable for this. Personally I would prefer cell cloning or gene therapy but I am told they are not available yet in the UK. Hopefully they soon will be?!

I would like to attend groups and classes but suffer from anxiety, which I am currently working on. Panic attacks and dystonia are less frequent and I get out to the corner shop and hospital now. It is the off periods, they are so frustrating!

I live alone but keep myself busy sketching, writing songs and poetry, reading, watching TV. I like housework and cooking but do not do much of the latter - not as much fun for one and cannot stay up long enough to keep an eye on the oven or hob! Spend lots of time at the moment cooling off in the shower or in front of the fan!!

It’s nice to have somewhere where I can go say what is on my mind and also speak to others with, or that have experience of PD. I look forward to your replies and posting some more…

Off back to bed before data runs out!

Have a sunny day and until then, sweet dreams!

Brenda


#56

Good evening to all forum members
I was diagnosed four years ago and will be 69 in October. I have been taking Sinemet and Rasagiline, have tried entacapone and stalevo but could not cope with the side effects and was due to add amantadine. Dyskinesia started to become a problem as did arm, neck and back pain. I decided to come off all meds and try Mucuna Pruriens, ordered the powder today,
I would be grateful if any member/s could advise if the are or have taken MP, have you had good results and what dosage you recommend. I intend to start low doses slowly. I wish you all well.
Minky


#57

Hello. Kelvin James here. I am a caregiver who works at a charity center where we take care of people living with Parkinson’s and dementia. It will be great to share and learn from this forum


#58

Hi @minky,

A warm welcome to the forum.

I’m sure you’ll receive some advice from our members soon, but in the meantime, you may want to read our blog post on natural forms of Levodopa here - https://medium.com/parkinsons-uk/could-we-treat-parkinsons-naturally-fea64ee8e96c

Hope you find this helpful. :slightly_smiling_face:

Best wishes,
Reah


#59

Reah
Thank you for your welcome and response to my query. I had already read the article you mentioned which gave me a boost to carry on with my wish to try a natural pd treatment. I also spoke to a pd nurse based at Parkinson’s UK as well as my own pd nurse.
I am starting with Mucuna Pruriens powder tomorrow and will keep a log.
Thank you once again
Minky


#60

I was diagnosed 6 years ago and did loads or research which only seemed to make me more worried. In the end I said to hell with it. I still work 70 hours a week (I own a pub all my regulars know my Parky status )it takes me over occasionally. But I fight back! I do what I need to do to get by. My wife pushes me when I need it, I saw her through a transplant and rejection. Life goes on. We try to make best of it. We only worry about what we can control


#61

Hi, I’m new to this too. My husband was diagnosed last year. It’s hard to watch my big strong man lose the ability to do things. He needs help to dress and to shave. He doesn’t drive any more and he cannot write even his name. Sometimes I have to go out into the garden for a secret cry but I tell myself he is still here. We laugh and talk like we always did. Hang on in there!