Primary lateral sclerosis (PLS) treatment

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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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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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 .

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