Motor Neurone Disease

Welcome, @ellu. You're so right that there is a lot of poor advice for motor neuron diseases out there among the useful. This must've been a tough blow to learn that you have progressive neurological disorder.

As you likely know, motor neuron diseases (MNDs) are a group of progressive neurological disorders that destroy motor neurons, the cells that control skeletal muscle activity such as walking, breathing, speaking, and swallowing. This group includes diseases such as amyotrophic lateral sclerosis, progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy, Kennedy's disease, and post-polio syndrome.

Do you know what type of MND you have?

Thank you for your reply Colleen. I have progessive bulbar palsy, and would like to make contact
with others traveling the same road to find out what symptoms I am likely to expext so that I can start planning for the future. I am a widow with four adult children and good friends who
support me, but when I reach the stage of not being able to care for myself I intend to move from my home into some residential care facility. I especially don't want my children caring for me, because they have their own families and careers to deal with. At the moment my symptoms are minor, but I would like to contact other(s) with a similar diagnosis for advice on day-to-day issues as the disease progresses.

@ellu, I'm tagging @beadelaney who also posted about living with progessive bulbar palsy.

Here's a related discussion:
- Anybody want to talk about Progressive Supranuclear Palsy https://connect.mayoclinic.org/discussion/anybody-know-anything-about-progressive-supra-nuclear-palsy/

Ellu, you are wise to look into residential care facilities now and to plan for your future on your terms.

ALS Support Group Meeting. The group meets monthly on the 3rd Monday of the month from 2pm to 3pm EST through Zoom facilitated by a Mayo Clinic social worker. Contact: Neuroscience Social Work at 904-953-0332 to be added to the group.

See the listing of upcoming meetings for the remainder of the year here: https://connect.mayoclinic.org/events/

Dear Colleen,

Thank you for sendng me the list of upcoming meetings for the rest of the year. It is unlikely that I will be able to join any, as I live in Australia and there is a significant time difference.

Best Wishes,
Ellen MvNeice

hi there,
i am just curious on how your doctor diagnosed you. did you have an abnormal EMG or NCS? or something shown on an MRI or blood work? i am currently undiagnosed and my neurologist suspects motor neuron disease or some form of neuromuscular disorder.

Hello friend,
My MND was diagnosed by a process of elimination. I lost count of how many specialists I saw
before a clever physician looked at all my tests together and sent me to a neurologist who confirmed an MND diagnosis. MND does not show up on normal blood or scan work. The clinching test was a nerve conduction test in which a neurologist stimulated various nerves in my body electrically and looked at a print- out of the results, which were clearly abnormal. This test is done here (Australia) in a hospital or specialist clinic, and you can be referred by your neurologist. The earlier you get a diagnosis the earlier you can get a treatment plan. I hope for your sake it is nor MND, but if it is noways there are all sorts of physical supports available, and you start using them as you need them. There is no cure for MND, and if anyone tells you otherwise he is a crook and liar. I wish you good luck on your journey, Ellen