new to the site 27 yr old MND sufferer

[Mndsuffer27]

Hello I live in Australia and i started showing signs of MND when i was around 21 but it could of been earlier. When i was told i had a slight limp i didnt even notice so i could of been even 20 when i first started having problems. My MND first effected my right ankle then moved over to my left ankle slowly. I lost all movement in both ankles after around 2 years and i started noticing my right fingers starting to cramp up and my right thumb not moving in the same motion as it used to. I got a diagnose after around 4 1/2 to 5 years. I had to convince the first doctor i didnt do drugs because he didnt believe me. The years of waiting and not knowing was so hard my emotions were like a rollercoaster and i only survived with a good support system. I go to counselling which has helped a lot and now im seeing how lucky i am because yeah i cant do as much as i used to be able to but i can still do a lot and my progression is very slow. I have just made the decision to get a wheelchair which was very hard to do because as a lot of people know people do judge you and being young i feel image plays a big thing in your life.

I can say these days i have hope and feel like a different person mentally. I know having a wheelchair a year a go i would of easily went into a depressive state, so i urge everyone if you need to see a counsellor and never and i mean never not talk about how your feeling. Trust me it gets you nowhere and pushes people away who just want to help


Thanks

 

[peter57]

Hi there,
talking is good for you, both face to face and on forums like this.

so welcome to the forum

Peter

 

[HelenL]

Mndsuffer27, for all you've been going through at such a young age, you have it pretty together! Welcome to the forum no one wants to have to belong to, yet is a lifeline to those of us who are here. I hope to see you around more.
Helen

 

[Mndsuffer27]

Mndsuffer27, for all you've been going through at such a young age, you have it pretty together! Welcome to the forum no one wants to have to belong to, yet is a lifeline to those of us who are here. I hope to see you around more.
Helen

I am like all sufferers i have my good days and my bad days. I have been taught to take it one day at a time.

 

[momap53]

Welcome aboard. I'm so sorry that you are joining us on this journey at such a young age.

Congratulations on making the decision to get a W/C. To H**l with the folks who seem to judge! I got my PWC a few months ago and it's such a relief! Not only can I maneuver about more safely, but find I can do a bit more when I get to where I'm going. Fatigue has been an ever present issue and the PWC is a true energy saver.

I think that most of us have a tendency to postpone getting the equipment we need much too long. I suspect that it's part of our denial that our bodies are beginning to fail us. Unfortunately a delay can oftentimes lead to very dire consequences for a person with ALS.

Check out Arkallen's posts about his stable of "Bugger's". He has made many custom additions and is able to travel just about everywhere.

Good luck to you.