New diagnosed pdd

Hi I havnt posted for a while as my husband,not been too good, back in 2013 my husband was diagnosed with Parkinson’s which we seemed to manage very well. Then now over the last say 12 months things seemed to be changing as he started sweating all the time and then not sleeping, he then started seeing dark shadows a lot of the time. Now over the last 5-6 months he started sweating worse than ever, sleep was a no go because as soon as he got into bed he needed to get out which went on for weeks. He had blood and water test to see if any infections were anywhere but they kept coming back clear, then halutionations started and speech went very quiet some slurring of words then started a lot of the time you couldn’t make out what was being said. We got in touch with our Parkinson’s nurse who I can hounestly say was a waste of time,as she had no time to listen to us and kept trying to tell us he had Parkinsonism not Parkinson’s told us we only had 20 minutes with her appointment and to get in touch with mental health. Our gp has been brilliant and has helped us with everything but over the last couple of weeks things had got worse to stag as being sent into hospital to find out now after the drs there taking the time to find out things that pd nurse didn’t he has now been diagnosed with Parkinson’s dementia all within 2days of being in hospital yet Parkinson’s nurse who has known him since 2013 couldn’t see what was wrong with him. So now onto next stage to see what comes next.

HI @Nettie

I am so sorry to hear about your poor experience and the difficulties your husband is facing, although it is good that he is now geting the help required. If you would like to discuss your situation with someone please do call our help line on 0808 800 0303 and speak to one of expert advisers and/orone of our Parkinson’s nurses.

Kind regards

Sue - Moderation team

Hi Nettie. So sorry to read about your situation. My husband, too, has PD and Parkinson’s Dementia.He has the quiet voice and hallucinations. Although, I have to say, these are far less frequent than they were since he came off Pramipraxole. These things can be down to the Parkinson’s but, in some people, they can also be down to side effects from certain drugs - worth keeping an eye on that. But what I also wanted to add is that my husband also has Autonomic Failure - something that can go hand in hand with PD in some people. One of the things affected is the body’s ability to control sweating. It’s probable your husband doesn’t have this, but it might be worth asking the question when you next have a consultation. Good luck.

No one has ever said anything to do with the sweating with a name so yes when I speak to the hospital dr I will ask. Thanks for taking the time to answer .

My Parkinson’s is not a advanced as people mentioned in posts. What drew my notice is that ‘sweating’ was mentioned. I am a female in my late 60’s, I have been experiencing ‘sweating’ for many years and over the years it has become worse. It is so bad that I haven’t been able to wear makeup. That may seen trivial, but to a female who wants to look her best, its far from trivial. My sons wedding three years ago, I was a mess, face streaming, hair stuck to my head, dress thankfully was carefully chosen not to show sweat at armpits and back, although it was literally stuck to me. That, even though I took every step to combat it. I even had an electric fan set up for me at the reception. Anyway to move on from that, I shower on average four times a day, a cool shower. I change underwear and clothing after showering. My bedding is changed mostly daily. I went through the menopause many years ago . In fact, I sailed through it following a late baby during my mid forties. So the menopause is not the problem. I rarely go out now, except for medical appointments. My specialist does not consider it a problem, no matter how much I stress it. It affects me throughout the year, weather, it could be a bitterly cold Winters day, and I’m dressed in Summer clothing, people in Winter coats, gloves, scarves, boots, there’s me, shortsleeved dress, maybe a cardigan or light jacket, looking a mess. I’m constantly checking as I fear I smell of body odour. Now, in above post, Autonomic failure has been mentioned. That’s the first I have come across that. If this problem, which, as we all know, is one of many on a long list, could be controlled or milder, it would make a marked difference to my quality of life. Any suggestions, knowledge would be most welcome.
I didn’t mention that the problem is more than ‘sweating’. Along with it the heat my body is experiencing, which is far above normal, is debilitating. I feel ill, weak, faint, generally unwell. With cool showers, a fan, I hardly see a difference. Following a cool shower or bath, I have to rest on the bed for a while before dressing, even then, I’m ‘sweating’ while I dress. Now you understand why I stay at home , and rarely leave the house.

Hi @MaggieT,

Thank you for your message. I am so sorry to hear about your experience with sweating, that sounds really horrible for you and is clearly have a major impact on your life. We have some information about sweating problems in Parkinson’s on our website that may be helpful and we also have an article from our online magazine with advice on how to manage excessive sweating (hyperhidrosis).

I would also recommend that you contact our helpline on 0808 800 0303 or by emailing [email protected] as the service is made up of trained advisers, including Parkinson’s nurses who will be able to provide you with further information and support related to your symptoms. Please do give them a call, they are open 9am-7pm Monday to Friday.

Once again, please don’t hesitate to reach out as we and the rest of the wider Parkinson’s community are here to support you.

Best wishes,

Emily - Forum Moderation Team

Many thanks EmilyDell for your swift reply.
I will certainly take up your suggestions. Speaking over the telephone some days poses a problem for me, but will call on one of my better days.
I have researched Autonomic failure, and it describes me to a ‘T’.
I also learned that it can be caused by Parkinson’s. I feel better knowing that this problem has a name. I’m annoyed that my PD specialist has never mentioned this, in fact , he dismissed it as a small annoyance. It’s not just excessive sweating, which , even that alone, is debilitating. Next I see him, goodness knows when that will be, I shall stress how my quality of life is affected by, what I now believe to be, Autonomic failure.
Thank you once again, you have been most helpful.

Hi @MaggieT

You are most welcome and I am glad my message was helpful. If calling is difficult for you, you can always email our helpline and request a call back from a Parkinson’s nurse if that is easier.

Wishing you the best and as I said, please don’t hesitate to get in contact.

Best wishes,