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jo aust

Member
Joined
Oct 16, 2006
Messages
11
Reason
Loved one DX
Country
AU
State
Queensland
City
Townsville
Hi it is me Jo. My mum found out she had pbp sept last year. She is going good on her rilutek. She has not been able to talk for about a least six months now but she still gets around. She has just been given a suction machine to clear her mouth out, by the association here in aust. They have also given her a talking machine but she prefers a kids doodle board. She has been tube fed for a year now easy to do, my kids call it her milkshakes, they say shes lucky she gets milk shakes all the time. I do family daycare and all the kids love her. They understand her actions and ask very nicely for the use of her doodle pad to draw pictures. The other day they said they would like to fix her voice for her. It was very sweet. The only problem we have here would be the fact that they only let us order two weeks of food at a time. I felt like telling the hospital staff that how would they like it we restricted how much food they were able to buy in their grocery trolly at the supermarket. Anyway have a good christmas guys. Mum and I will be relaxing in the spa under the palm trees in my back yard, after a drink or two (it can be easily poured down mums tube.)
Jo
 

Nene

Member
Joined
Nov 12, 2007
Messages
16
Reason
PALS
Diagnosis
10/2007
Country
AUS
State
queensland
City
cairns
neighbours

Hi Joe,
glad your mum.s doing o.k. I live in Cains so wwe r very close. I was diagnosed October2007 with mnd it came as a shock as I am 46 fairlyyoung, I travel to Townsville to see neurologist as we dn't have 1 in Cairns. Who does your mum see?
 

davis08

Member
Joined
Aug 17, 2007
Messages
12
Reason
PALS
Country
US
State
ga.
City
gainesville
Jo

Jo
Sounds like me I have bulbar als, been unable to
talk for about 6 months. Use feeding tupe about year
or a little more. I also take a little wine down the tupe.
Still get around pretty good. Am in Ga. usa

Davis
 

jo aust

Member
Joined
Oct 16, 2006
Messages
11
Reason
Loved one DX
Country
AU
State
Queensland
City
Townsville
Hi Joe,
glad your mum.s doing o.k. I live in Cains so wwe r very close. I was diagnosed October2007 with mnd it came as a shock as I am 46 fairlyyoung, I travel to Townsville to see neurologist as we dn't have 1 in Cairns. Who does your mum see?
Hi lady from cairns. You asked about my mothers neurologist. I cannot remember his name. He works on the second floor of the Mater Hospital here in Townsville. Mum only saw him once to diagnose her condition in September 2006. He knew as soon as he looked at her that she had pbp. My mum lives in Mackay 4 hours south of here. She stays with me on a regular basis. This gives dad a break on his own and mum time to relax without him fussing over her. When she stays with me it is like a holiday for her. We go out every afternoon and she gets to visit old friends. My mum is 65. Mother of five children and 8 grandchildren. Have you got pbp or basic motor neuron? Mums next visit is for two weeks just after christmas. I am going also to Cairns the end of Janurary for a break with my kids. If you need any help just let me know.
Jo aged 37 of Townsville.
 

jo aust

Member
Joined
Oct 16, 2006
Messages
11
Reason
Loved one DX
Country
AU
State
Queensland
City
Townsville
Queenslanders

Hi Joe,
glad your mum.s doing o.k. I live in Cains so wwe r very close. I was diagnosed October2007 with mnd it came as a shock as I am 46 fairlyyoung, I travel to Townsville to see neurologist as we dn't have 1 in Cairns. Who does your mum see?

The neurologist in Townsville works at the Mater hospital we have forgotten his name. Mum only saw him once for her diognosis. She now sees her doctor and specialist in mackay where she lives. She visits our house on a regular basis. She is here now for a few weeks if you would like to talk to her via email. She also speaks to two other ladies in Mackay who have progressive bulbar palsy. [email protected]
 

musicsmiles

Member
Joined
Oct 6, 2006
Messages
23
Country
US
State
New York
City
Holley
My Husband on Rilutek

My husband was diagnoised October of 2006, with the Bulbar onset of ALS. He has been taking Rilutek...Every month , but the month of October 2007. This disease has progress so rapidly. It makes me wonder if this medicine has helped it slow down at all. This year November and December 2007, were two horrible months. My husband ended up in the hospital,,,intensive care unit, with pnomonia and hypertension. It made him so weak and made the disease progress even more.

Musicsmiles
 

Nene

Member
Joined
Nov 12, 2007
Messages
16
Reason
PALS
Diagnosis
10/2007
Country
AUS
State
queensland
City
cairns
cairns

hi Joe, the docs name is Reimus i also see him I go back at the end of January. I stopped taking rilutek as I had side effects I have been told what type of mnd I have yet I hope your mum is doing ok google Steven Shackel his web site is very interesting
 
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