Mum with MND

[Roo]

Hi everyone

My mum was diagnosed last June with MND literally in the doctors office (her symptoms were that severe and had been left that long because the surgical neuro team that she was under were convinced her symptomology was ‘spinal’) she was admitted to the ward for nerve tests etc. To confirm what we already knew. She already had lost the use of her arms (about January last year) and within weeks lost strength to her legs and come Christmas she was solely PEG fed and can now no longer speak. As you can imagine the quick onset of symptoms is absolutely devastating for us all, but particularly for her.

She uses a computer system controlled by her eyes to speak (unfortunately her voice was too far gone for a voice bank), however even using this system is too exhausting for her and she usually manages a couple of hours a week on it.

For the excess saliva she is prescribed glycoperonium (heart med) this seems to lighten the saliva but we still suction and change bins about 10 times an hour... (open to suggestions for better management)

She suffers from chest pains a lot, so we are wondering whether that is due to muscle deterioration in the chest. We were having physio three times per week but the company (I won’t name them but they are a cancer trust and it is very doubtful they have even dealt with MND to be honest) who have that contract have completely pulled out because they don’t have the manpower for long term physio (wtf?!) so we have no help.

Do others have similar issues of healthcare professionals having no clue when it comes to dealing with MND - the amount of times the GP surgery have called and asked to speak to my mom is beyond funny now (though My mum does joke that we should put her on just to see their reaction!)

Also, mums personality seems to be changing and her emotions are particularly hard to manage... which I believe emotional lability is one of the symptoms, but this is all very new to us and the quick onset gave us little time to prepare!

Any advice would be appreciated

Roo

[Gillette]

Hello Roo and welcome to the forum but sorry for your need to be here. You are in the right place to ask questions: there is a lot of knowledge and experience floating around the forum that you can draw on.

It sounds as though the last 18 months have been traumatic for your mum, you and your family. Is your mum under the care of the community palliative care team, or the hospice? If not, ask your mum's GP for a referral.

I don't think I can help with the issues you raise, but I'm sure someone else will be along soon. In the meantime, I am sending electronic hugs to you.

[Lynne K]

Hi Roo, I'm sorry about the fast deterioration of your mum. You ought to have a palliative care team involved in your mum's ongoing care. These are an OT (Occupational Therapist), a physio, a speech therapist (these deal with chewing and swallowing issues as well as the obvious speech. It isn't right that you and your mum are left to muddle through with this horrid journey on your own. You must all be feeling devistated. If you can do as Dina suggested and either get your mum a referral to a hospice from your mum's GP, or self refer to a hospice. Hospices have full palliative care teams that could see your mum and they may be able to get a care package set up or at least point you in the right direction. Hospices do councelling, day support and respite care too. Obviously it depends on what resources the particular hospice have. I second what Dina said. These forums are a good source of advice, tips and moral support. Take care, Lynne

[Roo]

Thanks guys. She has a three monthly appointment with the MND specialists which has now become a home visit as she is unable to travel, and receives aromatherapy from the hospice. Unfortunately mum doesn’t want to use respite services nor does she want carers, which I can appreciate and ultimately it is her decision, I guess. I’m still a little astounded that the physiotherapists from the palliative care have pulled out rather callously, blaming ‘resources’ and this leaving my father, myself and my brother to do the physio (none of us are particularly trained)... so obviously mum is very down about the lack of services she is receiving in the community so to speak... we will mention it next week at her MND review and see if there are other services she can tap in to as not being able to move her limbs herself is meaning without proper physio she is stiffening quicker than she needs to and thus lifting her is painful.

Thanks for your kind words and help

Roo

[shrew]

Welcome Roo, so sorry you are having a hard time x

[Barry52]

Hi Roo,

I’m sorry to hear about your mum. From what you say your mother may qualify for nhs continuing health care (CHC). I would request an assessment.

Regards,
Barry

[Ellie]

Hi Roo,

Sorry you've had to join the Forum.

Can your mum have physio in the hospice I wonder?

They might also be able to hurry on the community team!!

Is your mum on any meds apart from glycopyrronium? An antidepressant can help with the emotional lability and, if her muscle tone is increasing, an antispasmodic may be needed.

There are alternatives to glycopyrronium bromide but maybe the dose needs to be increased before trying other meds? (amitripyline, hyoscine, atropine are some and Botox injections)

Take care.

Love Ellie.

[Roo]

Thanks for your suggestions Ellie - she’s tried a few different meds with regards to the heavy drooling and this seems to be the best out of a bad bunch for her. She has lots and lots of different meds, she was on an antispasmodic prior to diagnosis. She has lots of different meds, though we are still trying to get the GP to realise that some of the meds are not PEG friendly! Useless sometimes! We have just fought and got Baclofen in liquid form after the GP told us it doesn’t come as liquid yet the chemist said it did but it’s really expensive ��!

In terms of a mood stabiliser, she takes one for the anxiety etc. Which would have the double effect of mood stabilisation.

Unfortunately the hospice only offers complimentary therapy and it is Macmillan in our area that would do the physio but they are unable to continue to offer the service as their intervention is not intended as long term (what?! Forgive her for living past their estimations! Shocking attitude!)

Is anyone able to answer the question as to whether MND effects processing. For example, when I ask my mum a question, she often takes a good five minutes to shake or nod her head and just sits grinning. I didn’t know whether this was a processing issue or whether it’s the inability to actually make the nod or shake of the head...

Thanks for all of your help guys!

[Barry52]

Hi Roo,

This is copied from the MNDA website and I hope it will help explain what may be occurring with your mum. These symptoms are not present in every body with MND.

What changes might affect my thinking and learning?
If you experience changes to your thinking and learning, you may find it becomes more difficult to:
• make and carry out plans
• think of things to do
• do activities in the right order
• do more than one thing at a time
• process information and solve problems
• make decisions after considering the options and consequences carefully • concentrate and take in new information
• recognise other people’s feelings
• finish tasks.

Best wishes,
Barry

[Roo]

Thank you so much Barry! That is really helpful and explains much of my mums symptoms!

Sorry folks if I’m coming across as ignorant or dense, but this is so new and such a rapid onset! It would seem that most professionals are clueless also (the GP still asks to speak to my mum when she rings for check ups... erm not possible!! Though mum does joke saying it would be entertaining to embarrass the GP by putting her on the phone and her only being able to groan!)

Does anyone have any information with regards to the genetic side of MND - when speaking to the doctor she wasn’t very helpful! To our knowledge my mum is the only one in her family that has been diagnosed with MND however her brother has recently been diagnosed with Parkinson’s and the symptoms are similar as to how things are affected... I just wondered if there are links?

[Terry]

Hi Roo and welcome to the forum;

I take longer to process things, guess it takes a couple of seconds to move my head and then I have to make sure I am not going to chock by swallowing sometimes which could take a minute. I also have to think about breathing, these are all things that just happen normally in normal people. I have to use brain power to sort these out and other things as well. Also not being able to do much or write notes, I forget things. Normal people just do it or make a note.

Your mum can be tested for the most likely Mnd genes, to see if see has any of the known ones that could be passed on.

Love Terry

[Ellie]

Hi Roo,

Sorry to hear your mum gets little help from the hospice.

Following on from Barry's post: The next time the MND Nurse / specialist visits her at home, a cognitive, behavioral and executive function evaluation can be done - it's not as daunting as it sounds!! Your mum will do some memory tests, language skills and answer some questions.

It will be good to know if she is struggling because of changes in executive and cognitive function caused by the ALS/MND or as a consequence of its symptoms such as poor breathing which can cause confusion, or sheer fatigue.

Re Parkinson's and ALS/MND: There are links between the two diseases on a molecular level and cetain genes, such as SOD1, are involved in both PD & ALS, but I don't think thee research has gone so far as to prove a direct genetic link.
Certainly there are people who are unfortunate enough to be diagnosed with both PD & ALS/MND (including a past Forum member) Given that your mum's doctor isn't interested, IDK if her brother would want to pursue the genetic theory??

Re liquid baclofen: I used it for a while and the stuff was so thick and sticky that we had a few syringe -> feeding tube explosions which spewed the suspension far and wide and was a nightmare to clean up We reverted back to crushing tablets!!

Hope you're doing OK yourself?

Love Ellie.

[Roo]

Thanks for all of your words of wisdom, it really does help!

Ellie - with regards to Baclofen, mum was given what the GP prescribed as liquid Baclofen and it was a thick treacle like substance that stood no real chance of going through the PEG no matter how much we watered it down, mixed it etc. Mum stood more chance of hypernatremia with all the water (lol) but when we mentioned this to the MND specialist he said that the thick stuff was a cheaper version and she now has the actual liquid Baclofen and that goes through no problem! (Worth exploring if you were better on Baclofen). The problem we are having now is with liquid lansoprazole (mum has GAVE syndrome also (aka watermelon stomach) as the liquid version of this has little balls in that I assume is a slow release - and these get stuck on the PEG - anyone else on liquid lansoprazole and has this problem? Or any suggestions?

Xxx