Dealing with MD

Hello Julie,

Congratulaions to your son on the getting a College placement. I went through a pretty arduous time trying to get placed and at the time the area of difficulty for me was steps and stairs. So many new and exciting things opening up for him I imagine he has a beaming smile [alongside some understandable nerves].

Sam has already posted some excellent links, at this stage I won’t post more as you might feel over loaded, but I can thoroughly recommend the FSH people. They may be able to give you names and numbers of professionals in your area who can help with your specific needs. You are right, sometimes it is difficult getting hold of the right person, there are so many organisations out there to help all types of people, with all types of problems, it is almost impossible for one single person to compute them all.

Most of all Julie – you are not alone.

Once you have had sometime to digest more info, if there is a specific area or issue you want help with, please post away and we shall see what we can do.

Hi Julie,
I know exactly where you’re coming from. I was finally diagnosed 11 years ago at the age of 54. Once the diagnosis had been made, that was it, I was on my own. I recently had an unpleasant stay in hospital, was told I would be referred and have now discovered that no referrals have been made so I am forced to lob the proverbial at the fan just to be treated fairly. I can accept that there is no cure, but there is treatment available to ease the effects. Just don’t let it get you down and keep “your chin up”.

Julie – I could not help but smile and nod when I read your post. I kept thinking, yeap, been there, worn the t-shirt threadbare! I can be something of a sarcastic mouthy madam when faced with professional people talking down to me or stating the obvious in a condescending manner if my mood is so inclined.

I take it the Optician did not see it necessary for you to have glasses but referred you to the Eye Clinic for other reasons? I am not familiar with their procedures, I have always just gone to the Opto and got new glasses [at extortionate personal expense, don’t get me started]. I have ‘yet’ to be referred to an Eye Clinic, but will probably quiz them at my next eye test [dreading it already] incase I should have been in the past.

Hope your son has a good first day at College

Mumsie – I can empathise with you. I never have had regular hospital appointments or consultant check ups and just after the Millenium when I was struck down with a major case of accute bronchitus I asked my GP to refer me as I felt that if nothing else my notes needed bring upto date. How I remember the day so well, the Neurology Doc was lacking in diplomacy after introducing himself said “You know you have MD and you do know there is nothing we can do for you” – I won’t post my reply I’d be banned but it hinged around several choice raised words and I finished my flourish with “I don’t ask the impossible, but I do expect a modicum of medical management” . After which I think he sent referals and notes to just about every department he could think of!

Ladies, we have up days and we have down days but us MD ‘chicks’ are a persistent bunch