Not Diagnosed Yet

My 67 yr old husband is in the process of being investigated for Parkinson’s. So far he’s had an appointment at neurology and on Friday he had a DATscan. His symptoms are stiffness and he can only walk very slowly. His voice has lost all variation, it’s all on one level. He can’t see properly, but the worst thing is that he is so confused and doesn’t seem able to process things properly. He can’t read a book or paper because he can’t follow what he’s reading, he can’t follow a phone conversation either. He used to love cooking but now finds it too confusing and also he can’t stand up for very long which adds to the problem.
He hasn’t been given any medication or any kind of support. All we know is that his next appointment will probably be in August. In the meantime his symptoms are escalating very quickly and I just feel overwhelmed by it all. If this is what it’s like before diagnosis how on earth will we cope after diagnosis?

Hi Redjune1,
We just wanted to take a moment to welcome you to the forum and let you know about the vast array of resources available to you just by being a part of our community. What you and your husband are experiencing, the struggle, will not be diminished here, and your voice is welcome and encouraged, whatever you are feeling. One thing we can say with absolute certainty is that you are not alone. The Parkinson’s community is vast and varied but there are some things, like your initial diagnosis, that are nearly universal, as you are likely to hear very soon.
We’d recommend this article on new diagnoses as a starting point for the wealth of data on our website. And we hope you will take advantage of our free and confidential helpline at 0808 800 0303, staffed with friendly and knowledgeable advisers, as a source not just for medical assistance but for many, many valuable tools that you may not have even considered. They are truly wonderful, and are eager to help.
We hope you’ll accept our warm welcome and best wishes,
Moderation Team

Hello Redjune1what an awful situation you and your husband are in and I cannot begin to imagine how worried you must be. In your shoes, because you write his symptoms are escalating, I would go back to the consultant, your GP both if needs be or indeed anyone else involved, to tell them of his deterioration. I wouldn’t wait for the appointment that’s a month away and that’s a long time given the apparent speed of deterioration implied in your post. I think it would be helpful for you to make a note of changes that have happened since his last appointment before contacting anyone partly so you don’t forget anything but also so you can be clear about the deterioration. The other thing writing it down may do is clarify in your mind what is actually happening. This is not to doubt in any way what you wrote but you are no doubt watching him like a hawk at the moment because you are worried and you need to be sure his symptoms are actually deteriorating and it’s not caused by your anxiety and stress; if you find this is the case you may feel able to wait for the August appointment with a bit more confidence.
Just to pick up on Jason’s reply, if you do nothing else I would encourage you to contact the helpdesk to get their view. As your husband doesn’t have a diagnosis of Parkinson’s I don’t think it appropriate, in the circumstances, to comment further at the moment. I hope this helps and sorry I can’t do more. Please do let us know how things go. Take care.

l would try to find the money to see a Neurologist privately if you can and if he diagnoses PD, your husband should go on Levadopa as soon as he can.