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Al fox

Active member
Joined
Aug 11, 2012
Messages
35
Reason
PALS
Diagnosis
06/2011
Country
Cad
State
Ontario
City
Toronto
My name is Alan I'm 40 years old and was diagnosed with bulbar onset ALS June 2011. Since that time I've been able to operate at a fairly high level. I continue to work(30 hours a week), and take part in my children's activities. The illness has resulted in me living in pain (neck pain)from the moment I get out of bed until I go to sleep at night, my speech has also become worse over the past year. I,early on, decided to fight this thing with all my might. I despise this illness and will continue to do so untill either a cure is found or the day I die.

My regime involves taking 20 supplements twice a day, acupuncture once a week, drinking Chinese herbal tea twice a day, glutathione injections once a week, and regular exercise(not as regular as I would like).

My family and I are hosting a walk to raise funds for research on September 29th, and to date have raised $130,000 and hope to raise another $20,000 by Saturday. The walk is called the Foxtrot and will be held in the west end of Toronto. The funds will used to sponsor a study at the University of Toronto into stem cells taken from the spinal column and their impact on mice and eventually people living with ALS.

I would be very intererested in taking on discussions regarding how people are successfully dealing with this illness. Please let me know if this would of interest to any of you.

Best regards,

Alan
 

ltbeauti

Distinguished member
Joined
Feb 22, 2011
Messages
215
Reason
PALS
Diagnosis
04/2008
Country
US
State
VA
City
Chester
I worked for years after symptoms began. I also have bulbar onset. Contrary to the average bulbar onset PALS I have slow progression. My sister has even slower progression than me.

I had only bulbar symptoms for years. Speech nasal sounding at first, then slurring words....then progressivly worse to barely understandable now. About 5 years after initial symptoms my balance became affected. Now I use a walker or scooter to get around.
The thing that I have had a hard time with is the slow loss of abilities. The speech, then hand weakness, the balance problems...leg weaknes ..... waiting for the next loss.

I take one day at a time. This site and other ALS forums have given me a lot of help dealing with things that crop up.
The doctors do not really give a lot of advice on the everyday things that really matter and the peeps on the forums have advice on what has worked for them.
 

Al fox

Active member
Joined
Aug 11, 2012
Messages
35
Reason
PALS
Diagnosis
06/2011
Country
Cad
State
Ontario
City
Toronto
Did you experience any neck pain?
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
There are clinical trials with stem cells and your doc should be able to provide some pain co trol. You may need some form of neck brace as well. Many PALS here can suggest ones that have helped.
 

Al fox

Active member
Joined
Aug 11, 2012
Messages
35
Reason
PALS
Diagnosis
06/2011
Country
Cad
State
Ontario
City
Toronto
Thanks for response. I wear a soft collar brace most of the day. The money we are raising is being used to fund a unique study into stem cells derived from the spinal column of the ALS sufferer and injected back into the same person. We are familiar with the study at Emory university and at Hadassah hospital in Israel.
 

ltbeauti

Distinguished member
Joined
Feb 22, 2011
Messages
215
Reason
PALS
Diagnosis
04/2008
Country
US
State
VA
City
Chester
I have been dealing with off and on neck pain. I don't use a collar yet, but know that it may be in the future.
Right now I use a microwavable beaded neck pillow. The warmth really seems to help. It helps with all of my stiff muscles and makes them relax and feel better.

Congrats on raising all that money. WoW !
 
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