I want my life back

[DNE92]

I WANT MY OLD NORMAL LIFE BACK. Might As well hope that I’m on Santa’s good list. 🤔

I am so fed up of all the symptoms (like all of us) and new ones just keep popping up. I went for a Riding for the Disabled initial assessment yesterday and found that when I stand on my right foot and try to lift my left leg I fall over. When did that start?

I now have 2 referrals- urology and respiratory. Please don’t let me end up having to wear one of those Darth Vader masks at night - they’re just so romantic 😱

Cheers

Lou

[tabey]

Dear Louyse

I think your really brave even getting close to a horse, they petrify the life out of me. i uderstand where your coming from i use to have a career and was just starting to climb the ladder when this horrible condition hit so i really do understand about wanting our lifes back. however your not letting it beat you your trying maybe new things too you like rideing which is in my eyes a huge achievement.

As for Darth Vader mask lol ive been a member of his club "c-app" since 2011 and you get use to it and my wife does not really noitce it at night any more.

the worst part of it was being filmed when u sleep it felt creepy knowing some one was watching you sleep lol

keep up the fight 😃

tabe

[DNE92 Moderator FND Hope UK in reply to tabey]

Cheers. I’m really looking forward to the horse riding but as there is a waiting list I might be looking at September. But the instructor’s sister has MS so she has some experience especially the waxy look I go before i have a seizure.

Cheers

Lou

[RobertWT]

The English language provides a whole dictionary of suitable, descriptive and polite words that might be used adequately and accurately to describe FND. However "Oh Bugger" is about the best that I can come up with.

I guess that you, and other fellow sufferers, might know exactly what I mean!

I want my life back too. I see glimpses of a normal existance (whatever that is) from time to time. I have days or even weeks of 'good legs' days than it knocks you back.

But I shall not give up. I will reclaim my life. Maybe it will be a different life, but it will be mine!

My carrying on with the struggle, sharing what works (and what does not) we can make a difference. It is a personal choice. Whether to live with (and survive and overcome) a 'condition' or let the damn condition dictate terms to you.

I know my preference.

Care to join me?

Best of luck with the horse thing. You're a bolder person than I would be!

[cgarff in reply to RobertWT]

Robert, you totally cracked me up on your post, thanks, I needed that. We do just have to keep trying, and trying, and trying .. Wait did I just say we have to keep trying? Good grief! :0) best to you in your fight!

Cgarff

[cgarff]

Oh my gosh Lou, I'm so sorry you are continuing to have more problems. Darn this disorder! I wish I had a magic wand to taje it all away. Send big hugs to you, and hope they can find answer for those new issues without too much of a change for you!

Keep smiling

Cheryl

[RobertWT in reply to cgarff]

Hi Cheryl

Here's power to you!

You can decide whether to do and act or be on the sidelines. I had another intimate meeting with the landing carpet a couple of hours ago, just as my home care assistant came up the stairs to help me have a bath. I had an attack of the jellyfish legs, which held me rigid and twitching (use your imagination!) and complete loss of the ability to speak. "He...", "He...", "He...", and she had NO IDEA that I was trying to say "Help me!". My wife (within earshot) did hear my pathetic calls but there was scant time in which for her to react and get to me.

Then I had a choice of three things:

Walk normally (yes, I wish!);

Find a piece of furniture or a person to steady myself ("He...","He...","He..."); or

Fall.

I 'chose' the last one. Fell fairly easily. I have now had about 20 months of practice (at the start I used to 'plank' - falling without ANY reflex at all. I have a scar on my forehead (that I call my third eyelid) as testament to this. After the first hundred or so falls it does get less surprising although no less painful.)

I struggle on.

Then again, Tuesday night was spent in A&E (I am on first name terms with the triage nurse) as a fall and knock had resulted in odema of a leg. Damn thing was twice the size of the other one. I looked very off balance. Indeed, 24 hours after it happened the 'bruise' was the size of a hen's egg - complete with a little lion (for my more mature readers!) (on a different subject I once had the honour and pleasure to meet Bernard (Lord) Miles, outside the Odean in Hammersmith who used to advertise the little lion. He was so 'normal' and just pleasant. I had just finished 'performing' in a Buddhist show called Alice (it is available on Youtube, if you are curious as to what Buddhists do by way of entertainment!), which was produced by Sally, his daughter, who was suffering from MND but despite being completely wheelchair bound and almost unable to hold up her head, far less speak, she still directed a cast of hundreds. A triumph of damn determination and a refusal to give in.)

The artica treatment (to reduce bruising) had helped. My colour was not altogether from lying in the sun, shall we say?

So today, this week indeed, has been rather interesting.

Trying, indeed.

Plodding along. Getting on for coffee time isn't it?

Damned if I will give in.

Robert

[cgarff in reply to RobertWT]

Good for you Robert, I'm proud of you for fighting. I'm so sorry you had another fall. Those suck!

So my story started in Dec 2008 with a cold, losing my voice, tye cold came and went, but the voice stayed hoarse. I would have a few hours, half a day or a day here and there with a voice, but it would you out again for several weeks. Went to an ENT doc, and he said I retrained myself to speak that way and said go to speech therapy. By the time I could get into a therapist, it came back so I cancelled. But later it went out again and again. Finally months down the road, I wrnt to a speech therapist, and he wotked jard with me and was stumped. He sent me to a Neuro doc, she tried everything under the Sun, but nothing. We even tried stomach surfer thinking it might just be due to reflux.. Voice came back for a few weeks then went again, but caused swallowing issues. 2 years into dealing with the voice movement issues came on. First slight head jerking, the to massive hand and arms flailing about for hours, then moved into head and neck, and eventually throughout the body. Myoclonic jerks, dystonia, gait, speech, non epileptic seizures, and the latest because I insisted they actually look outside the box, generalized idiopathic seizures or epileptic seizures. Dizziness, dropping, freezing in place (unable to move) , etc, etc. I have had to use a wheelchair many times, fall in the shower, wobbly legs, brain fog. You know, you can go on and on with these stupid things. But with the meds I am on, I am seeing improvements, not 100% but better than I was a year ago.

I am there with you. And am here to chat any time.

Cheryl