Health update

[Poet Chistopher Robin]

Update on my health, I’m just managing to type with the left hand, the right side is near totally gone the right hand is useless, the right foot keeps catching the ground. My speech is really very poor too, and its getting more difficult to eat.

I also get severe problems through the night with breathing and wake every morning with locked muscles in the legs and fall over freely feels like I could break a bone so easily. My neck feels like I’ve been in an extreme car smash and have severe whip lash and I’m tired round the clock

I need a peg feed, have a neck collar, they have fitted me with a shield for the right hand to stop the fingers from crossing over, and a similar thing for my right foot to stop my toes from hitting the deck, the electric wheel chair is now here, and they loaned me a vmax that will talk for me to some extent.

Other than this I’m still okay but fed up of having to ask Jude to do so much for me, as also constantly having to repeat myself to her, I would not wish this on my worst enemy.

Jude took me out to town the first time out in the electric wheel chair five gears and even five was dead slow stop on the open path until they speeded it up.

The metro train (local underground) was really scary getting on and off, it needs to come off backwards apparently I got stuck trying this (there was a right crowd on the metro) and a gent pulled me free thankfully.

People were literally jumping out of my road, I nearly wrecked the Debenhams store too.

Getting back home my leather coat sleeve got caught on the letter box and its now ripped beyond repair. I feared ever going in the damn thing again but we went to the coast today practically trouble free

But on top of it all I’m still positive

 

[Toto's Dorothy]

Poet,
Is the wheelchair yours or a loaner? The reason I ask is, I have one ordered and before I could leave the evaluation I had to be able to maneuver on 1 similar to mine. When my new 1 comes in, I will go back and have more training before I go home. I pray my walls withstand my driving.

I am also thankful that you are keeping a positive outlook. And you have a wonderful wife.

 

[momap53]

There's a bit of a learning curve to driving these things as our doorways and walls will attest to.
So glad you had a chance to get out and that the trip to the coast was a positive one!
Don't bikers wear leathers to protect their skin from mishaps? Too bad about your coat.

 

[Poet Chistopher Robin]

Thank you both, the wheel chair is on loan, and is sadly very wide from back to front, its the actual boor frames I keep catching with me being very tall. Luckilly just yet I just about can still walk indoors. I was right handed too but have to use my left hand which is also on its way out

 

[notgivnup]

UK, so glad your are holding onto your POSITIVE, it will see you through anything this thows our way. I pray we can all do the same.

So sorry you had a bad outing , but happy the next went much better. {{{HUGS}}}

 

[Miss]

My husband was a lefty and lost his left hand and arm first. Learning to use is right had was a challenge in and of itself! Best of luck to you!

 

[momap53]

The power wheel chairs are generally quite large. I still have some mishaps with the back wheels. The lower cupboards in the kitchen have a few scrapes and I even managed to shear off a lower drawer knob. The fridge has a few nicks and scrapes as well. We were able to remove the doors to a couple of rooms and the door stops and trim which gave me a bit of extra clearance. Thank goodness the arm rests are made of rubber!

 

[tammyg]

Practice makes perfect. Don't let these issues hold you back. People understand something is wrong and there are always people that are willing to help. Don't become a hermit, get out there and live to the fullest. Do all you can do, while you can. Don't let this horrible disease hold you back. You don't sound like someone who gives up very easily. Like the little train that could.....

 

[Georgia Peach]

You sound about where my husband is too. We've had a terrible time with the larger power chair. Holes in the wall that have been repaired and turning around inside the van is very difficult since the chair is so long compared to his first wheel chair. Glad that you are still able to get out and about. It's very scary for you and for Jude.

That would be an interesting study to see if other ALS patients dominant side went first in this disease. My husband started with right foot drop, lost the use of his legs and then lost the use of his right hand and arm. His fingers in his right hand are now curled into his palm in a permanent position. He too has learned to write barely with his left hand and drive the joy stick with his left.

Do you find that you are coughing all the time with this disease? We have the bi-pap and cough assist but neither seems to help the constant coughing. Talked to the nurse today about getting a nebulizer for use on home.

Good Luck to you...

 

[Poet Chistopher Robin]

The wheel chair is not too bad, just that I keep catching the door frames, and all you ladies know a ladies house proud ways. My friend with COPD was telling me that the wheel chair I have (Spectra Plus) is really for outdoor use

We were fortunate to move into this disability made bungalow in November just last year, sadly with no thanks to the mnd association here in the uk

But its a garden too and there are no ramps back or front, its a housing association that we rent from.

Georgia no cough as yet, but I was coughing a good bit earlier tonight, I see about a nebuliser in the morning, will let you know how that goes

 

[Poet Chistopher Robin]

The respiratory nurse telephoned me this morning she said she did not feel qualified enough to give me a nebuliser, and re-arranged the appointment to see a doctor this afternoon.

She feels that a nebuliser would not be beneficial to me just yet, and has recommended that when I’m really bad with breathing as I was the other week, to use the ventolin and my spacer.

So basically I’m, no further forward and still sitting out of breath on an evening. It seems to get worse the warmer the weather or when Jude puts the heating on remebering I have mnd and copd

Any one any ideas please