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Azizullah Khattak

Member

September 18, 2024 at 11:16 am in reply to: Bipep Mask or tracheostomy, which one is more useful for ALS patients

Thank you for your response. I would like to hear from those who are on tracheostomy. How do they feel with it and it’s benefits over NIV

Azizullah Khattak

Member

August 14, 2024 at 9:26 am in reply to: What assistive device is helping you right now?

Thank you Mr Ortiz for your assistance. I will wait for the outcome of your meeting with the manufacturer.

Azizullah Khattak

Member

July 27, 2024 at 6:26 am in reply to: What assistive device is helping you right now?

I use Bipap for about 22-23 hours a day. I feel great difficulty in communication with my family members because they cannot hear me while my Bipap mask is on. Someone on the forum suggested to use SPEAX (https://www.ataiamedical.com/)

I contacted the company but unfortunately they refused to provide me the device as they do not sell it to people outside U.S.A. I really need this or any other similar device for communication while my Bipap mask is on. Can anyone help me to get SPEAX or any other similar device.

ataiamedical.com

Ataia Medical – Empowering Patients with the Freedom to Speak

Azizullah Khattak

Member

July 17, 2024 at 4:45 am in reply to: Problems of communication while using Bipap mask

Thank you Mr dataonwheels for sharing the information. This is exactly what I was looking for but unfortunately the company refused to sell the device outside U.S.A as I am from Pakistan. Can anyone help/suggest how to get this device

Azizullah Khattak

Member

July 3, 2024 at 7:40 am in reply to: Problems of communication while using Bipap mask

Thank you all for your feedback. Actually I am quite comfortable with full face Bipap mask. I am looking for any device which I can fix with the mask for amplifying my voice

Azizullah Khattak

Member

November 2, 2022 at 5:07 am in reply to: Study Suggests a New Spinal Delivery Method Renders Stem Cell Therapy Safer, More Effective for ALS

I am interested

Azizullah Khattak

Member

July 8, 2022 at 2:45 am in reply to: Would you seek out Albrioza treatment?

How the patients living outside Canada can get. Is travelling to Canada is the only way to get it. Is there any other way of getting it.

Azizullah Khattak

Member

May 26, 2022 at 10:45 pm in reply to: What do you think of this new form of Radicava?

Does anyone knows where to get the oral Edaravone from.

Azizullah Khattak

Member

December 28, 2021 at 11:25 pm in reply to: Clinical trials

Most of the clinical trials are conducted in USA or Europe. They don’t accept patients from outside US or Europe. So there is no chance for patients like me living in Asia to benefit from these trials. I have contacted many of them presently recruiting patients but all of them refused to accept me as I was not in US. One of the trial on stem cell offered me to come to Dubai for the injection and asked me to pay $ 27000. Ridiculous.

Azizullah Khattak

Member

December 7, 2021 at 7:49 pm in reply to: Learn About Your ALS Progression – The Precision Medicine Program (PMP)

Please let me know about participation

Azizullah Khattak

Member

August 13, 2021 at 12:07 pm in reply to: Stem Cell therapy for ALS

Thank you Mike

Azizullah Khattak

Member

August 31, 2024 at 10:31 am in reply to: What assistive device is helping you right now?

I use iVolveF1A full face mask by BMC . Have you tried the device on this particular mask. Also can you give a list of full face mask with which it has worked. I will check these masks in local market here, if available there won’t be any issue.

Thanks

Azizullah Khattak

Member

August 28, 2024 at 9:43 am in reply to: What assistive device is helping you right now?

I am waiting for a positive response from your side. I hope you have succeeded in acquiring the device.

Thank you

Azizullah Khattak

Member

August 20, 2024 at 9:21 am in reply to: What assistive device is helping you right now?

Dear Ortiz,<div>

Did you get the device. Please let me know so that I send you a prescription for it. I thank you for your assistance.

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Azizullah Khattak

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