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johnny17
@johnny17

Posts: 4
Joined: Jul 05, 2018

PLS TREATMENT

Posted by @johnny17, Thu, Jul 5 12:39pm

My brother has been diagnosed with PLS
He is wheel chair bound .. last 90 days voice weakened . Diagnosed year ago but dealing with it for 2 1/2 years . Are there any clinical trials or promising results anywhere ? Thanks

REPLY

Welcome to Connect, @johnny17
I'm connecting you @lorenamaher, who is living with primary lateral sclerosis (PLS).

Are you familiar with NORD (National Organization for Rare Diseases)? Here is their information page on PLS. At the bottom of the page are current investigational therapies https://rarediseases.org/rare-diseases/primary-lateral-sclerosis/

Additionally, I found these studies at
– Mayo Clinic https://www.mayo.edu/research/clinical-trials/search-results?keyword=Primary%20lateral%20sclerosis
– NIH https://www.ninds.nih.gov/Disorders/All-Disorders/Primary-Lateral-Sclerosis-Information-Page#disorders-r2

May I ask how old your brother is? Do you live near him?

@colleenyoung

Welcome to Connect, @johnny17
I'm connecting you @lorenamaher, who is living with primary lateral sclerosis (PLS).

Are you familiar with NORD (National Organization for Rare Diseases)? Here is their information page on PLS. At the bottom of the page are current investigational therapies https://rarediseases.org/rare-diseases/primary-lateral-sclerosis/

Additionally, I found these studies at
– Mayo Clinic https://www.mayo.edu/research/clinical-trials/search-results?keyword=Primary%20lateral%20sclerosis
– NIH https://www.ninds.nih.gov/Disorders/All-Disorders/Primary-Lateral-Sclerosis-Information-Page#disorders-r2

May I ask how old your brother is? Do you live near him?

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65 he is in assisted living . Morningside center richmond va . 2 miles from me ..

@colleenyoung

Welcome to Connect, @johnny17
I'm connecting you @lorenamaher, who is living with primary lateral sclerosis (PLS).

Are you familiar with NORD (National Organization for Rare Diseases)? Here is their information page on PLS. At the bottom of the page are current investigational therapies https://rarediseases.org/rare-diseases/primary-lateral-sclerosis/

Additionally, I found these studies at
– Mayo Clinic https://www.mayo.edu/research/clinical-trials/search-results?keyword=Primary%20lateral%20sclerosis
– NIH https://www.ninds.nih.gov/Disorders/All-Disorders/Primary-Lateral-Sclerosis-Information-Page#disorders-r2

May I ask how old your brother is? Do you live near him?

Jump to this post

Thank you for responding !

Hello @johnny17

I would like to add to my welcome to Connect!

First of all, let me say how wonderful it is that you are advocating for your brother. It is so important to have advocates to help when you are dealing with diseases that limit your ability to move and/or to speak. You are providing an invaluable service to him and as one who has Parkinson's (and also a paralyzed vocal cord) I can certainly appreciate it.

You mention that his speech is weakening. Has he had any speech therapy? Speech therapists are among my favorite medical professionals as they offer great vocal exercises. Also, are you aware the singing can be beneficial for the voice even when speech is difficult? Here is an article about a singing group for people with neurological disorders, http://joyfulnoisechorus.org/

What type of Physical Therapy is offered to your brother, now?

As I looked through the posts that Colleen listed above, I found this link to a patient support group. I think you might find it very helpful. Here is the link. https://sp-foundation-org.presencehost.net/

I wish you and your brother well. I look forward to hearing from you again and thank you again for being a voice and an advocate!

Teresa

@hopeful33250

Hello @johnny17

I would like to add to my welcome to Connect!

First of all, let me say how wonderful it is that you are advocating for your brother. It is so important to have advocates to help when you are dealing with diseases that limit your ability to move and/or to speak. You are providing an invaluable service to him and as one who has Parkinson's (and also a paralyzed vocal cord) I can certainly appreciate it.

You mention that his speech is weakening. Has he had any speech therapy? Speech therapists are among my favorite medical professionals as they offer great vocal exercises. Also, are you aware the singing can be beneficial for the voice even when speech is difficult? Here is an article about a singing group for people with neurological disorders, http://joyfulnoisechorus.org/

What type of Physical Therapy is offered to your brother, now?

As I looked through the posts that Colleen listed above, I found this link to a patient support group. I think you might find it very helpful. Here is the link. https://sp-foundation-org.presencehost.net/

I wish you and your brother well. I look forward to hearing from you again and thank you again for being a voice and an advocate!

Teresa

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Thanks , he is taking some speech therapy .. the singing idea is interesting .

@johnny17

Thanks , he is taking some speech therapy .. the singing idea is interesting .

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Hi, @johnny17 – wondering how things are going with your brother and his primary lateral sclerosis (PLS)?

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