Build-UK Chat Forums

[Jeannie]

I thought I would start this thread as we have some great new members .

Jeannie age 28, dxed July 2001, symptoms June 2000.
I can still move all parts of body with difficulty tho, breathing and eating seem fine at present.
Walk with Darren my partner short distances or use scooter....speech is slurd, visible wasting in tongue, forearms, shoulders, hands & legs, neck. Upper body is weaker than lower body.
Last fvc 68%.

My Current meds, Baclofen 30mg x 3, Quinine 300mg @nite.
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Best wishes

Jeannie



If I fail, if I succeed at least Ive lived as I believe.

"As I grow to understand life less and less, I learn to love it more and more."

ALS onset June 2000, dxed July 2001, I am 32 yrs old.
Living and loving everyday regardless of ALS
I'm singing and dancing inside!

[Rob]

Rob,age 41,dx ALS(limb onset) on 9th July,2002. 1st symptoms noticed January 2002(weakness in right arm/hand and leg).
Arms and legs are useless,had RIG feeding tube fitted September 2004,trache fitted March 2006,no speech.
Use power wheelchair to get around.
Daily meds: Prozac 60mg,Stemital 5mg.
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"There is no such thing in anyone's life as an unimportant day."

[Bluepete]

Pete aged 56 Dx May 2003 Bulbar onset.
Still taking the dreaded Riluzole and no other prescribed medication relating to MND.
Breathing poor now and awaiting a decision on funding for trach. ( Its like living on death row waiting for the Health Care Trust to say if they will let you live or let you die) I can still move my arms and hands although have difficulty with fine motor movement like buttons etc. No speech but still managing to eat normal foods if minced down.Walk a little way using a frame.
Struggle now to participate in the forum because of breathing problems.
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It's not the years in your life that count. It's the life in your years.

[charlotte]

Charlotte aged 30 years, married to John who has MND aged 31 years, dx March 2001 symptoms August 2000. Upper body now very weak with little-no use in hands and arms. Legs quite strong can stand with assistance but not walk. Swallowing and breathing still ok but having to have all meals purified. Speech now detiorating. Had PEG fitted in December and thankfully now gained a few pounds !!!!

charlotte

also nearly forgot, started on riluzole and baclofen however since October time been using BuNaoGao so stopped all other meds except Vitamin supplements

[Paul Wicks]

Paul Wicks BA. Hons (Dunelm) - Research Psychologist and MNDA-Funded Prize PhD Student

Interests in cognitive, behavioural, and emotional change in MND, rare subtypes (Familial ALS & PMA), epidemiology, neuroimaging, quality of life, assistive technology.

Final year PhD student at the Institute of Psychiatry, part of King's College MND Care & Reseach team under Professor Nigel Leigh.

Webmaster of BUILD and co-webmaster on www.mndcentre.org.uk

Paul

[James]

Hi All,
James aged 53 diagnosed Nov 2002, now that I know what the symptoms were I can trace onset back to 98/99. Symptoms started in left foot and has now almost knackered both legs completely and is slowly getting into both arms. Breathing and swallowing are both O.K. at present. I do not take any medication and never have, apart from when I tried Q10 and Picnogenol, which were both ant-oxidants. I get around the house by holding onto things but am becoming more wary as I have had a few falls and am scared of breaking a bone or suchlike.
I have a heavy duty scooter which will take me over rough ground in the park or woods etc. which I enjoy when the weather is fair, but really makes things worse if I attempt it in cold weather. I was a Sheet Metal Worker by trade all my working life, spending 12 years on the oil rigs. I have had hand controls fitted to the car which is automatic and I still do a little driving when I am in the right frame of mind. Speech is still unaffected. I am told I have a slower form than most which was one of the factors I took into consideration when I decicided not to take Riluzole.

Bye For Now,
James.

[Anonymous]

Male 55 years old. Fasciculation noticed feb 01, tripping and weeknes in right side at same time. Dx aug 01 and went on Riluzole shortly after. Limb onset with average progression if such exists. in power chair 2 years. Have ability to type with one finger and speak a little. Must use hoist for transfers. Did tv interview 1 month ago with

this beautiful lady. Keep very active with ALS Society and ALS clinichttp://ranger03.com/als_clinic.swf
Watch health closely, when it falters i consume wine (red), beer (cold) and Pot (greenish brown). Have noticed health to falter around 1800
Use bi-pap for 1 year whenever i must lay back. Use nasal pillows with bi-pap and love them. Happy to be in this forum.

[deceased]

[jackie]

jackie, 50, told i had mnd over year & half now although had it at least 2 years before i was told i had it, i lost use of left arm hand & leg first then my right foot started to drop & now im in wheelchair, i still have use of right hand although it is getting harder i cant do buttons etc, my speech & swallowing seems fine at the moment, although the tirdness can get me down, i was taking riluzole but found it made me sleep a lot more so i stopped it, i have also been told i have systemic lupus, but am not having any treatment for it, the only medication i take is amoxicillin as i had my spleen removed, so glad i found this forum & can chat to people who understand.
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one day at a time.....

[Magic]

Jeannie - would you like to borrow my Pritt-Stick? (Thread made sticky )


"Magic".... 28... also known as Matt, though Magic is my nickname off the forum as well. Resident computer nut, I also look after the BUILD website for Paul, and provide the Forum and Chat facility. I work full time at a training centre teaching mainly older students (many 60+ age group) how to use Computers. I'll answer any computer questions that I can, so feel free to post them in the Computer Help section.

I'm also slightly loopy, but I wouldn't worry, I'm a nice guy really. .

[Waves at Bluepete] ... that's my Dad over there.

[Wayne]

Wayne 42 DXd 6yrs+ had symptons a lot longer.
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All of us could take a lesson from the weather.....It pays no attention to criticism.
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"Be yourself because everyone else is taken"

[Morticia]

Esther 32 years old diagnosed May 2002 started with tripping over on toes. Now both arms week hands not good can still walk ok but legs are weaker than should be but do not appear to be deteriorating. Speach a little slurry at times but mostly good. Breathing good unless i've done alot of walking.

Meds:Riluzole, Vit E, Quinine, Q1, and the best boost for me alternative healing.

[May]

May (45), wife of Jamie (4 dxd Sept 03 from first symptom 10 weeks before. Limb onset (limp and tripping and major fasiculations). Jamie is a fast progressor - can walk a few steps unaided indoors, wheelchair out of doors. Lost speech almost entirely, has RIG fitted for nighttime feeding. No food or fluid by mouth. Needs non invasive venting but could not tolerate the machine (NIPPIV) so is on 5ml morhine per day to assist with anxiety over breathing. Intended to go to Beijing for OEC treatment, however deterioration over past 3 months has prevented this. Now trying Peptide (cobra venom antidote) x 3 injections per day to try to protect neurons from further deterioration. We are both Glaswegians who divide our time between homes in Glasgow and Welling, Kent. Massive Celtic FC supporters. Married for 26 years.

[Jamie deceased]

[John B]

Hi everyone,

John B age now 54 [2 days ago] Symptoms August 92, diagnosed a year later. Weakness in all limbs, difficulty speaking and swallowing [But a lot better since cutting down dairy products and drinking grape juice, not white wine [shame] .

On Quinine and Baclofen. and lots of TLC from Pam [wife, carer and limbs].

[skode]

Hi everyone
Pat here. Age 50. ALS (upper & lower) dx Feb 2003 and progressing too fast for comfort. I’m wheelchair bound and transfers are becoming increasingly more difficult due to rigidity in legs. Both of my arms and hands are very weak - I need both hands to operate the mouse and require daily assistance with dressing, bathing, eating, toileting, brushing my teeth and etc. On BI PAP since Nov 2004 – last FVC was 40. Swallowing and eating are still good.

Taking your mind off of ALS, enjoying family, friends and life any way you can, eating, drinking and doing whatever makes you happy is the best medicine I know of for this dam disease!
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"A long life may not be good enough but a good life is long enough... wish not so much to live long as to live well."

Pat

[margaret]

Hiya I'm Margaret aged 48 diagnosed Jan 03, had symptons a good 18 months before. All limbs are affected but can still use left arm/hand, just about. Permanent wheelchair user. Speech and swallowing have started to be affected. FVC has declined rapidly. It's now around 20, but luckilly not showing any real signs of sleep apnea and oxygen levels are acceptable. Just a bit short of breath when talking!
Have just retired from 34 yrs with HSBC, still missing it at the mo.
Married to Bryan for 29 years, two kids Paul 22 and Stacey 19.
Attend Kings MND Clinic under Dr Ammar Al-Chalabi.