So we have now seen the consultant from the neurology department. Personally I wasn’t as prepared as I should have been. I have so many questions but it is like my head is running in so many different directions. My husband has questions but each department seems to hint it could be others area that needs to solve it. It is never going to happen that we can have a group consultation but that is what I feel would be the most productive. I wanted to let him take the lead. I’d jump in when needed.
She seemed surprised that after over eighteen months he hasn’t deteriorated, well his mobility as I seem to be needing to read between the lines. We explained what treatment the other consultants have put him on and we get the suggestion that he needs to be seen by both departments once he is no longer on his current medication. They may be suggesting something when he needs to be on this. Well hello people! Is that not something you need to sort out between you? She finally said it could be a mixture of all his aliments.
Deep sigh. Try not to be sarcastic. I am not qualified but to me that seems common sense. This is so time consuming when you have a twenty minute appointment every six months. You ask one question with one consultant then have to wait a few more months to ask the other consultant the same thing. Only to be told they need to change what the other department is doing. Is it just me but this is pointless? Stay off the medication until both parties have assessed you. Oh so in that year he has no quality of life. Come on people please. There has to be a better answer.
I mentioned she was the only point of contact we have. She seemed surprised. Oh I will refer you to the local Parkinson’s nurse. Yeah result. Are you doing this? I am only finding information on the Parkinson’s web site. So have you signed up for this? In fairness no one has given us any direction. I feel like I am feeling my way in the dark. Freaked because I have no idea. Afraid of reaching too far in case I find something nasty. I don’t know what I should or shouldn’t be doing. Finally she is referring us to the Parkinsons consultant. This is another long wait but feels like maybe a little step in the right direction.
It makes no sense to be rude to them but I sure feel like swearing. If I hadn’t mentioned not having any other assistance nothing would have happened. I only found out about the Parkinson nurse due to research and a friend mentioning it. Please this is hard. Don’t assume we know it all. Give us a little help here. You are the professional. Respectfully be professional and help us..
She then mentioned exercise classes. Keeping him mobile is paramount. Yep I get that. All my research puts them at least an hours drive away all during the week. Is it too much to find something a little more local. She points out one that is a little closer on a Saturday. My husband pipes up. I am at my allotment a lot. That’s not enough, you need to be going here every week. Internally I am eye rolling. That is a woman who has never tended a garden. So we swap an one hour, weekly exercise session for daily trips to the allotment! I know what my husband will be doing.
I have looked into this one but you need to contact them for more information. Lets hope there is an opt out box as I do not want to be put on another mailing list. Maybe something for the winter months. So if you feel like you are not getting assistance I am afraid you are going to have to speak up. Its the old saying if you don’t ask, you don’t get. This ok if you know what you need to ask for. So be general and ask if there is anyone you should be in contact with for general enquiries. I’ll let you know how we get on when we get contact with ours. E x