Please help – I’m searching for others with similar symptoms?

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

Hi there - you don’t say whether you do any exercise classes. I attend a version of PD Warrior which includes using the voice, shouting as well as physical exercise - very helpful in helping to strengthen your voice. Do you have a local branch that offers Singing or Vocal Therapy? There is also the Lee Silverman Voice Coaching course. PUK also do a voice microphone kit in their shop which will magnify your voice. Hope you can get access to any of the above to help you out.

Fizzy hi and thanks for responding.

I don’t go to any organised classes like PD Warrier, but do spend time almost daily for stretching and aim to do 5 or 6 strenuous workouts with dumbbells and an excersise bike which
I feel helps.

SALK were in touch yesterday with an appointment I think to start a
Lee Silverman course, so I’m very pleased about that.

Am I the only one with this basket of PD problems?