Help seeking advice

About Parkinson's and health Newly diagnosed
1

Hello everyone,

I’m hoping to get some advice and hear from others who may have had a similar experience.

My 44 year old husband has been experiencing neurological symptoms for years that have progressively worsened over the last 6 months. We are currently awaiting further investigations and a DAT scan, but I am becoming increasingly concerned about the speed of his decline.

His symptoms initially seemed to be predominantly on his left side, but they now appear to be affecting both sides. Symptoms include:

  • Tremors (initially left-sided, now also affecting the right side)

  • Slowness of movement and thinking

  • Reduced facial expression and slower responses in conversation

  • Difficulty keeping up with conversations, with others also noticing this change

  • Toe tremors and cramping, particularly on the left side

  • Constipation

  • Urinary urgency

  • General reduction in mobility and function

  • Problems with memory

Over recent months, family, friends and colleagues have all commented on the changes they have noticed in him. It feels as though his symptoms are progressing quite quickly, which has left us feeling anxious and uncertain.

I appreciate that nobody here can diagnose him, but I wondered:

  • Has anyone experienced a similar pattern of symptoms?

  • Did your symptoms progress rapidly before diagnosis and then stabilise?

  • Were there particular symptoms that prompted your specialist to investigate conditions other than Parkinson’s disease?

  • Is there anything we should be asking the neurologist while we wait for the DAT scan and follow-up appointment?

Any experiences, advice or guidance would be greatly appreciated. This has been a difficult time for our family, and hearing from others who have been through a similar journey would be really helpful.

Thank you for taking the time to read this.

2

Hi, @MyTT and welcome to the forum.

Thank you for sharing your story so openly here, and I’m sorry to hear that it sounds like an incredibly worrying and uncertain time for both you and your husband.

While we can’t diagnose or interpret test results here, many people in the community will recognise that period of waiting for investigations and trying to make sense of symptoms. Hopefully some members will be happy to share their own experiences with you.

It might be helpful to keep a record of any symptoms, changes or questions that come up before the neurology appointment, so you can make sure everything that’s concerning you is discussed.

You may also find our information on getting a diagnosis helpful while you’re waiting, which includes a section on preparing for an appointment.

And if you’d like to talk things through with someone, our helpline is here for both people with Parkinson’s and their loved ones on 0808 800 0303. Our trained experts and specialist nurses are on hand anytime between 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays.

I’m glad you’ve found your way here, and we hope you’ll find the forum a supportive place while you navigate the next steps :blue_heart:

Parkinson’s UK Moderation Team

1 Like
3

Hi MyTT,

You state that he had been ‘experiencing neurological symptoms for years that have progressively worsened over the last 6 months.’
You haven’t stated what they were, which makes it very difficult to try and advise.
Were there tremors, urinary urgency , slowness of movement and other symptoms that started some years ago?
Did you simply ignore these hoping they would go away, or were they not really noticeable?
You state that “have progressively worsened over the last 6 months”.
Did he go for any diagnoses over the years, before the “became more noticeable”?
Has he been on any medication whatsoever?
44 is really young to have experienced Parkinsons, however it does happen.
Your visiting the neuro is definitely a good step.
Once you have done that you will be in a much better position to understand exactly what the situation is.
Remember simply because a DAT scan is positive or negative does not always mean PD.
The chances are very good that the results can give a good indication, but not always.
Your neuro will better understand the results.

1 Like
4

All those symptoms align with PD, but try not to worry too much about the decline as it can feel quite quick once you breach that motor threshold of available dopamine.

Other body systems will have been compensating the lack of dopamine potentially for years.

1 Like
5

I wonder if he has an infection of some kind ? This can bring on symptoms, I believe a blood test would be worth having .

1 Like
6

Thank you for your reply. My apologies for not explaining things.

My husband lost his sense of smell around 7 years ago. He then had a tremor in his left pinky which started nearly 2 years ago. In the last year his tremor has moved to his left hand and arm, in the last 6months his tremor has moved to his upper body and he now has a tremor in his right hand. Since March we have noticed that he is stiffer and more rigid. He complains of cramp on his toes, mostly when he is walking. When we were away last week I noticed that his left toes had a tremor.

He is a lot slower, forgetful and takes time to process information, family members have said that they find it difficult to have a conversation with him and one member asked if he was drunk, at a recent wedding.

He has become increasingly withdrawn and low in mood.

He is frequently constipated and I have noticed that he is ‘weeing’ more frequently. He has struggled with sleep for as long as I can remember.

His face appears emotionless at times and it looks as if he is grimacing. His dentist has said that his jaw is misaligned and wants to refer him Orthopaedics.

We have been together for 27 years and I know him inside out and back to Front.

He presented to the gp two years ago and then a further three times before he was referred. We saw a neurologist in September but he said it was anxiety disorder. He referred my husband for a mri to rule out MS and a CT scan, but this was denied because of his age.

I made another gp appointment and she re-referred. We saw the same neurologist. He didn’t examine my husband just re read the letter he sent after the first appointment and discussed his mri results. We were waiting nearly 2 hours to be seen only to be in and out within 5 minutes. Reluctantly he referred my husband for a Datscan.

We have been waiting since March for this and in that time his symptoms are more noticeable, he needs more help with getting organised, getting his shoes off undoing buttons and trousers and doing buttons up. He is a lot slower. Our children have noticed a change and they are scared.

Family members are commenting. I contacted the neurologists secretary to see if we could get an appointment Soon. After then contacting pals we have a lm appointment this week for a datscan. My husband was so Relieved when I told him he cried.

Finally we are getting somewhere and feeling listened to. For the last year we feel that nobody has listened to is. Instead telling us it is anxiety and that we may never get any answers.

I’m really sorry for the long post. I hope I have made sense.

Thank you so much for your replies.

MyTT :smiling_face:

7

Hi, @MyTT and no need to apologise for the length of your post - you’ve explained things very clearly!

One of the hardest parts of any diagnostic journey can be feeling as though you’re not being heard, especially when you’re seeing changes in someone you know so well.

I’m glad to hear that things are finally moving forward with the DAT scan. It’s understandable that your husband felt emotional when he heard there was a date for the appointment. And we can understand how the changes you’ve described can be very unsettling - Uncertainty can be difficult for everyone involved.

As you head into this next stage, it may help to continue keeping a note of any symptoms, changes, and questions you both have, so you feel prepared for future appointments.

Please remember that our helpline is here for family members as well as the person experiencing symptoms. If either of you would like to talk things through, you can call 0808 800 0303.

Please do let us know how you get on with the DAT scan and appointment this week. We’ll be thinking of you both :blue_heart:

Parkinson’s UK Moderation Team