Atypical PD Searching for people with similar symptoms

Reposted from Introduction topic,.
My symptoms appear to be quite rare, I would like to hear from anyone who have similar symptoms so that we may share notes etc as I don’t see how the NHS system offers any planned structure to our medication. I understand with PD it’s a lot of trial and error, I’m hoping we can pool our resources to be able to control this.

After visiting my GP with a nagging cough and slightly slurred speech I was referred to hospital to have electrical tests from which we were told I had an aggressive form of MND. We were offered a second opinion and I was admitted at Sheffield’s Royal Hallamshire Hospital under the care of Professor Dame Pamela Shaw who thankfully reclassified me as having ‘atypical ’PD.

My symptoms are varied, firstly as it affects the muscle under my tongue, leading to quite difficult issues a with both speech and swallowing. A recent video fluoroscopy highlighted that with each swallow a percentage of both food and liquids are entering my lungs, and I am very prone to choking fits.

My voice has lost most of its pitch and very annoyingly I speak far too quietly, and either as the day progresses or I’m having a bad day, I can be reduced to almost incoherent mumbling. This is something which my wife hates most, as she says she gets the worst part of me, as at the end of the day relaxing I’m more prone to choking, and my voice can barely be heard.

Other aspects which I’m sure we forget until trying to capture it all to document on this forum are in no particular order; dealing with lack of sleep, constipation, wee the color of strong lucozade (and smells), horrendous halitosis, muscle weight loss, forgetfulness, anything from simple lists to conversations where I find it difficult to express myself properly. It’s also very easy to fall into an indecisive mindset as I’ve certainly noticed an attitude of impatience when I’ve spoken and not been heard, for example whilst shopping or on the phone, or ordering drinks in a bar (especially where there’s a noisy background), and now (due to my daily concoction tablets) to top it all off I’m also suffering from ED.

I have a wonderful app Medisafe which reminds me every three hours to take and tick off what I‘ve taken . It also provides reminders to restock when required. It has a useful diary for when I’m asked to record how I’m feeling in response to differing meds etc.

Sinamet CR *6 + Sinamet plus *1
Madopar *3
Amitriptyline to sleep

My Husband suffered from a number of the same conditions you describe. Weight loss, sometimes slow to express himself, constipation, quiet speech and disturbed sleep. He attended a 6 week course organised by a parkinsons speech therapist which helped.It’s called the Lee Silverman voice therapy.Swallowing was compromised and I think it’s very important to see a speech and language therapist who can check your swallowing. Do you find that the patches helped you. I understand that they are a dopamine agonist, good luck. Joanie

Hi thanks for your message. I think much the similar situation really, I must say my local SALT are wonderful, a I’ve done the LS loud programme and they’re trying to help re-swallowing. I won’t use the thickener as it’s dreadful.
My weight loss concerns as it seems to be muscle that’s disappearing. Guess I’ll have to up the exercise routine to counteract!