New to site- Feeling so lost right now

[Spud]

Hi, I'm Spud and my mom has been given diagnosis of MND, I think.

This is my first time on a forum, ever. Please forgive my ignorance and let me know if I do something wrong.

Now, let me explain. Houston is where I hang my hat. My parents are 6 hours away. I have deduced on my own that my mother's symptoms started 3 years ago when she fell in parking lot at work. She said she tripped on pavement. About 3 months later my daughter went to spend spring break with them and my mother could hardly walk and balance was very off. My mother decided it was her ankle and arthritis giving her trouble. Summer came and my daughters went to visit and mom's symptoms didn't get better and I actually thought they were worse. I finally talked her into doing a physical. She used her gynecologist. Blood work was good but bone density showed severe bone loss and osteoarthritis. I convinced her to start Calcium and Vitamin D and to try arthritis medication. By fall, mom was really having trouble with walking with pain in ankles and self diagnosed herself with plantar fasciitis. She also decided vitamin was causing her problem. She self treated through internet. After several months, my dad and I convinced her to see a Family Practice doctor for ankle. He said arthritis and sent her to PT. Fall 2018, I noticed mom's speech had changed and things were worse. She fell doing home PT and fractured her ankle. I convinced her to do MRI of brain. It showed demyelination of nerves. We also did MRI neck/spine. Osteoarthritis. So she convinced herself it was Rheumatoid Arthritis even though FP doctor said her labs didn't show it. We got to Neurologist but nothing was resolved or maybe she didn't tell me everything. She then convinced FP doctor to send her to Rheumatologist. Rheum said it wasn't RA and that Neuro had put in chart possible Parkinson's. She was sent back to Neuro. Long story short we finally got to EMG and Nerve Conduction test 2 weeks ago. He told mom in room that she has rare motor neurone disease or MND; definitely not Parkinson's. Neuro told her he was sending her blood work all over country. He is testing for things like HIV, Lymes Disese, all autoimmune etc. My father did not understand and my mom has already googled all kinds of things. She is convincing herself that it is Lyme Disease. (She was bitten by something last fall). We are in wait mode now. But Neuro did tell her to be careful with swallowing.

I am a Family Practice nurse but know nothing about this disease. I have however scoured the internet and it has given me no hope. Here is where I am. I feel it is MND upper and lower based on my research and her symptom progression. It has turned my world upside down. I cry everyday. I don't know what to say to my children or how much to tell them. My husband and friends have no words. I'm just lost. I talk to my mom everyday and can hear the strain in her voice and worry that I'm causing more fatigue but yet afraid I'm going to call one day and she can't speak to me. I don't know what to say to my dad who doesn't realize what he may be facing. And, I feel so much guilt because it isn't me with the possible diagnosis. I worry about my mom's dignity. She is a very proud private lady. They live in a small town and I know she is worried people will find out and talk. I don't know how to help them and know that this will be a great financial hardship. I can't leave my job because I have a family too. I know mom is holding out hope and I'm trying to keep it too. But, I feel we have lost valuable time these last 3 years and time is short. I'm also angry. My parents have worked hard all their lives with a minimal education just to get to retirement and my mom may not be able to enjoy it. She may not be able to do the 2 things she loves, quilting and gardening. They are devout Christians and I question why God has let this happen or even if their is a God. My mom told me on the phone the other night with a laugh to find someone quick for my dad because he can't be by himself. I laughed but didn't know what to say except "I don't think we are there yet".

Thank you so much for listening to me pouring out my heart. I just don't have a clue where to go from here and patience isn't my virtue.

Spud

[Lynne K]

Hi Spud. Sorry to hear of your worry about your mum. Waiting for a diagnosis is very hard and has your emotions all over the place which is perfectly understandable and common.

Your mum sounds very stoic. But if it is MND she will soon need to ask for help when she needs it. Also, she'd need to get treatment and help with the right equipment at home.

If your mum can still stand and walk but there's a risk of falling then maybe talk her into getting a walker. 3 wheeled walkers are convenient around the house but 4 wheeled are more stable. Here in the UK we are provided walking aids and wheelchairs free of charge by our local services team.

About your mum's failing speach. Would she start banking her voice before she looses it? Then her banked voice could be used to create a synthetic voice that aims to be closer to our natural voices than a synthetic voice off the shelf. If you search previous messages for voice banking and speech software you will find links about how to start the process.

I send you an electronic hug. Take care, Lynne

[Terry]

Hi Spud and welcome to the forum;

Sorry to hear of your mum's problems and the affect it has on your family.

Does your mum have a diagnoses and if so did they say what type. They can sometimes tell a lot from the EMG about this.

There are groups in your country that might provide some advise and maybe help.

try to write more later

[Spud]

Thank you both for responding.

Terry, mom told me the doctor said rare motor neurone disease when she last saw him 2 weeks ago. I was not at appointment and as I said my dad didn't get it. I think the Neurologist down played it because he needs to rule out everything else it might be. Plus, it is a small town and he may have never had a patient with this. I have convinced my mom to let me go to the next appointment which will tell us actually what we are dealing with. I just want to be prepared and ask the right questions. Also, I have looked at other forums but was drawn to this one and the information. I will try forums in my country as well. I'm looking at all MND information I can get my hands on. A lot of information I have read is from UK and even some from Japan.

Lynne, thank you for the mention of voice banking. I know I read a patient story about it but did not really understand. I will ask Neurologist. Also, my mom is using a walker and has now begun to search for a scooter so she is not confined to house. We just don't know what we are looking at as far as equipment. I hope to know more next week. If all test are back, which they probably are, we will see Neurologist and start a plan. I have the type personality that says we can fix this. There is an answer out there which makes me pushy. Mom doesn't need that right now so I'm trying to find answers myself to help point her in the right direction. It just seems like a needle in the haystack.

I did forget to mention earlier that mom has last over 20 pounds in last year. She told me that her leg muscles have wasted away and she can't get in bathtub anymore. She has also noted index finger that has atrophied. I can tell that swallowing is a problem and she always clears her throat now when she talks. Her voice has changed as well.

Thank you again for the input

[Lynne K]

Good luck with everything Spud. Good idea to go with your mum to her next Neurology appointment. Lynne

[Terry]

Hi Spud;

The info on the main Mnda site is very good and here is a link to the "Information Sheets",

https://www.mndassociation.org/about-mnd/information-resources/information-for-people-with-or-affected-by-mnd/

Including this one for telling children:-

https://www.mndassociation.org/wp-content/uploads/10G-Support-for-families-with-children.pdf

I think it's best to tell everyone, and kids are normally very accepting.

Your mums progression seems quite slow so she could have a mainly PLS type one which is what I have.

I doubt that your parents use a computer but it might be a good idea to get a speech program on one. If you have a I phone, you can down load "Speak It" for around $6, and you can use it and see what you think. There are other options for Android tablet's/phones and I Pads.

It's good that she's looking for a scooter to get around on, I did that.

We can get drinks that you can live on, they are quite expensive at around $2.5 each and you would need around 6 per day. But it's important for her to keep her weight up. There is a food ideas leaflet on the main site and various threads on the subject.

Please feel free to ask any questions or just share things with us.

Best wishes, Terry

PS: You posted in the right place on the forum in the right way. But please split your posts up more with paragraphs, so they are easier to read and follow.

[ccinjersey]

Hi Spud

Sorry for your Mom's diagnosis. Since you live in the US considering contacting the ALS Association they can also help you locate chapters in your Mom's area as well as support groups.

You have found the right place here for great advice, and support from forum members.

Wishing you, your Mom, and your family all the best in the days ahead.

CC xx

[shrew]

so sorry to hear of your Mum'd diagnosis Spud . People are helpful on here x

[Deb]

Hi Spud and a warm welcome to the forum. So sorry about your Mums diagnosis.

This is the right place for emotional support and practical advice. The early days are totally overwhelming, with so many worries but make sure you look after yourself too.

Love Debbie x

[Kayleigh]

Hello Spud,

Welcome to the forum. I'm sorry that your mom is so unwell.

I think you are a very kind and caring person and it is wonderful that you want to help you mum as much as possible. I expect she is very proud of you for being so supportive of her and wanting to help her so much.

It's true that because MND is a rare disease not all doctors have a great deal of knowledge about it, and so it's great that you are doing your own research.

You have probably already realised that there is a lot of information on the MNDA's website but please don't hesitate to ask questions and ask for advice here as well.

Understandably, this is an upsetting and difficult time for you. You are being very brave and I hope you have support from family and friends.

This forum is a special and friendly place, where we usually have an empathy and understanding of what we are all going through. Please feel welcome to join in on this forum as often as you like.

Best wishes,
Kayleigh x

[Ellie]

Hi Spud and welcome.

Sorry to hear of your mum's diagnosis. I understand your feelings.

It's probably best if your mother attends an ALS Specialist to have her diagnosis confirmed if her "small town Neurologist" isn't confident on diagnosing ALS/MND, or indeed you want a 2nd opinion.

Going forward, if it's possible, attending an ALS Clinic is recommended for the best and most appropriate care - they have the expertise for both medical and equipment needs.

To find your mum's nearest centre, use the finder on this link http://www.alsa.org/community/?gclid...0aAqcUEALw_wcB

You'll also find lots of good info on the site.

Take care.

Love Ellie.

[Spud]

Good morning from Houston

Thank you for all for your kind words and information.

Test are in. Mom and I have an appointment for Tuesday to find out our journey. She has allowed me to take her and I'm already making a list of questions to ask if the case arises.

I do have one thing I have noticed. Mom is using words when she talks to me that she would not normally use. She is very "proper". She doesn't curse in front of me or use slang type terminology. Is this something I should mention to Neurologist?

Spud

[Ellie]

Yes Spud, do mention the change of vocabulary to the Neuro - it might be nothing or something.

Love Ellie.

[Spud]

Well, the test are in.

Doctor said all labs were negative. He said ALS or MMN. He said the words terminal.

I am confused about one thing, he said lab work for MMN was negative. He still suggest spinal tap to make sure. Why spinal tap if lab for it was negative?

Wants us also to get second opinion from specialist which we will.

Parents in shock. Mom really held out hope for Lyme disease. Mom felt he was sending her home to die. Im not about that. He didnt suggest PT, OT, or anything. Maybe he expecting specialist to handle it.

We are still at a crossroad. One roads leads to recovery of a sort MMN treatable and the other to the unknown.

Hanging in there. Goodnight from Houston. Thanks for listening.

[nunhead_man]

Hi Spud

I am confused about one thing, he said lab work for MMN was negative. He still suggest spinal tap to make sure. Why spinal tap if lab for it was negative?

I am sure somebody with more knowledgeable than me will be along in a minute, but I also had a spinal tap in order to confirm diagnosis.

This was on the one hand to exclude multiple sclerosis as I understand it, but also at my request to check for infection in the spinal column as at the time I was wondering if what I had any relation to having had Bell's Palsy before.

For those that do not know Bell's Palsy is caused by the infection of the cranial nerve, where it passes through the middle ear and as a result one side of one's face is frozen, running from eyeblink the does not work to one side of jaw not working - frighteningly similar to a stroke. In my case it seems to have been caused by viruses resulting from an attack of cold sores and was over in a fortnight. But as that freezing of nerves was what seemed to be happening to me in my case I was interested to know whether there were in fact any similar viruses in my spinal fluid that was causing the effect.

The answer was no, of course

My diagnosis took quite some time once I was in the hand of a competent neurologist because he wanted to see what was developing - and it was the shape of my left hand with the loss of its pinch grip, which was the definitive point in my case, along with the exclusion of everything else it could be.