View Full Version : First anniversary

7th March 2015, 13:50
it is now 12 months since I was diagnosed with progressive bulbar palsy, at that time I had full mobility, slightly slurred speech and problems swallowing liquids quickly. Now I am completely fed through my peg, have to wear a neck collar, finger splints and have little mobility. Breathing assistance at night and little energy to do anything at all. That is fast.

7th March 2015, 14:04
Hi Trevor it is also my husbands confirmed anniversary a day I will never forget blow one you are told you have ALS second blow you already had it a year third blow how long you have !!! My husband is a drummer and stubborn as a mule like most men ha ha ha and he took his frustration out when hie played gigs he fought MND head on but now he is losing the fight life is tough and he knows the drums have to go soon tying the sticks to his hands isn't going to work for long!!! and its heart breaking as that is his passion and this cruel disease is taking that away now, I just can't belive in this day and age there is no cure !!

7th March 2015, 14:05
Yes it is fast. The thing is though no ones knows at what speed it will continue.

I'm beginning my third year since foot drop popped up. I'm down to one remaining useable limb. According to the stats if I'm an average ALS case I've got tops two years. I don't go by date of diagnoses, I prefer date of first signs of MND.

7th March 2015, 14:13
All my husbands limbs are affected but just about useable he has a stick and a wheel chair but he fights me when I tell him to use his wheel chair he prefers to stumble about with a stick or arm in arm with his mates !!! Recently been told his choking is worse because his throat muscles are breaking down and he is breathless but no machine or peg yet which is good, always an active man but the last mo th he stays in bed reading and sleeping or watching the footy we now have to have our garage converted for him as stairs are a pain it, just as I get me head around one bit I get hit with something new!!!

7th March 2015, 14:49
At least we are all in the same boat Queenie, it is comforting to know you are not alone, this is what is great about this forum. A new thing for me today a district nurse came and gave me an enema. The problem was caused by the peg food, drugs and lack of activity. It did work and feel much better now.

7th March 2015, 15:21
Trevor, I wish we could congratulate you on your anniversary. It's a touch one for you and the other half.

Still, congratulations on going, just make sure you're not clogged up too long.

Best wishes, Terry

7th March 2015, 17:55
In seven days it is my anniversary. I have no speech, have feeding tube (not using it yet!, balance all over the place, always falling down, bipap on trial but I am not using it, considering rise and recline chair and mobility scooter - oh, yes, and I am keeping Kleenex in business. Everyone has a different path don't they? Joycie x

7th March 2015, 18:05
It's three days to my one year diagnosis and two years from the first slur in my voice. I am still mobile but legs feel funny. No voice. Tongue and lips mostly affected and so tricky sometimes eating. Saliva is my main difficulty, but I am determined to manage for the time being. As Joycie says she's keeping Kleenex in business and I'm keeping the makers of Tesco kitchen roll in business. Its a funny old world. A. xx

8th March 2015, 00:02
Hi to all

My dad was diagnosed 25th March 2014 so nearly a year, I am not 100% on when my dads first symptoms first started but as he kept it all to himself but after chatting to dad Christmas 2013 after he stayed with me and the kids he was walking into walls and falling off chairs fell upstairs all in space of 2 days I knew something wasn't right he was 55 and active, after speaking to dad about me going to see his gp with him he then told me that he been spilling things and dropping things and he noticed that his speech was effected about 6-12 months before, by time he was seen by the neurologist he was unsteady on feet and his speech had got much worse and weakness in hands.

So that was nearly 12 months ago and now dad can walk just about but with walking aid and also has powered chair, he is unable to get dressed or undressed shower himself brush teeth or brush hair he is unable to shave, had PEG fitted in May 2014 we was flushing only up until about 2 months ago, dad has been on soft food diet for around 7-8 months but now really struggles and decided that he wants to be PEG fed and just eat for pleasure, my dad also sleeps about 80% of the day as he feels tired all the time, 2-3 weeks ago I had noticed dads breathing wasn't so good, so after struggling as it got worse is currently in hospital and trying to use NIV which isn't going so well but he keeps trying.

I can't believe how quickly all these changes have happened and watching someone deteriorate is so difficult, I am my dads full time carer and I can honestly say this has been so difficult I am an only child with a young family of my own and I have had to give up my job and my life to spend what precious time I have left with my dad. My dad is in denial and I not sure he will ever come to terms with what is happening but all I can do is be there to support him and show him my love.

Must admit it's been tough and I been strong but last few weeks have been the hardest so far and keeping Kleenex is business:)

Jennie x

8th March 2015, 18:05
If you go by diagnosis I won't make two year anniversary. 12 July 2013
If you go by when symptoms started it was my two year anniversary February 2015.
I am ready to go to hospice to pull plug on BiPap very soon.
First symptoms, slurred speech, short of breath and muscles twitching.
Now. Laid up in bed, on BiPap 24/7, can't speak or swallow, two frozen shoulders, right hand curled up and arthritis, legs very weak, just about walk few metres and RIG fitted.
I hate this disease with passion.

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