Advice needed please.

[Jody123]

Hello everyone, please accept my apologies if I have put this in the group. It’s my first post.

My dad was diagnosed is ALS MND March 2019. He is having trouble with his hands and unable to grip onto a spoon or fork when eating, is there anything anyone could recommend that could help with this?

Also my dad is now having trouble holding his neck up, he has been given a sponge support that goes round his neck, but it’s really not doing the job and causes pain. Can you get more supportive ones? Or one made?

My last question is regarding pain, he is In quite a lot of pain especially his neck and has recently been prescribed morphine. I have been doing research though and come across CBD oil? Is this something that can help? And where to get it?

Sorry for all the questions, my dad only told my sister and I 4 weeks ago and are still in shock, we want to help which ever way possible and have been reading a lot, but are very confused about what we can do to help. It’s all such a worry 😢

Thank you in advance x

[matthew55]

Hello, I have Bulbar onset and I get my CBD oil from Amazon (paying tax I know but way too convenient ) it helps with pain and is great for sleeping. Life IS ****. )

[Ellie]

Hi Jody, sorry about your Dad's diagnosis but a warm welcome to the Forum.

First port of call for your Dad's needs is his OT, who can asses him and provide equipment to make his daily life easier/better. There is special shaped cutlery or foam grips, for example, and various collars/neck supports which will help keep his head up and reduce that neck pain.

By sorting out a collar, he ought not need such strong painkillers as morphine. (As a BTW, morphine causes constipation, so chances are he'll need laxatives) By all means he can try CBD Oil.

Take care.

Love Ellie.

[Ellie]

Don't worry Matthew - it's only the likes of mobility aids that are VAT exempt

[Lynne K]

Hi Jody, welcome to our forums. Nothing to add really because Ellie has already given you smashing advice as she always does. So just my best wishes for finding a solution for your dad. You and your sister must feel like you are on a roller coaster of emotions. It’s good that you have each other for support. Take care, love Lynne x

[Jody123]

Thank you for your reply. He has an OT who has supplied a couple of next braces but they are not doing a lot. After researching I found a private clinic in Manchester that make them for you. We live in Kent though, I have been looking for somewhere to get one made for him, a sturdier one that is made to fit him better, but I’m having no luck finding where you can get this done in my area. Would you know of anywhere at all? Even though he’s having trouble walking and not being able to use his hands, it’s his neck that is really getting him down.

[Jody123]

That’s really helpful, thank you. I have also been looking into thc and some trials that have been done. Do you know much about thc?

[Ellie]

Oh Jody, that's really unacceptable for the OT to leave your poor Dad without a good neck support There are so many different types available... (It makes me mad to hear this as, without my neck support, I'd be constantly looking at my belly button, not to mention be in a lot of pain)

Could he/you contact his MND Clinic and ask their OT for a neck support - there is even a specially designed support for MND, the HeadUp collar, as well as various cervical collars. You should not have to either source nor pay for one for your Dad

What type of support did the Manchester company suggest?

Love Ellie.

[Jody123]

Ellie thank you so so much for this information, I have just spent the last hour reading up about the heads up collar, I’m going to call the company in the morning, it looks like it would really help him. The one he has now is like a sponge that straps around his neck, he also has a grey one that I have just seen is called a head master ? I think. It’s not doing much either and is very uncomfortable. The only way he can get relief from his neck pain at the minute is mophine, and resting his head on the wall if he sits on the arm of the sofa. When ever I go to see him he is sitting there. It’s a shame as he loves to read but he’s too uncomfortable. He has mentioned this to the OT, or rather my mum has, as he doesn’t like to make a fuss 🙄 and she adjusted the sponge one but it’s not made any difference. Honestly I have been googling neck supports for two weeks and never come across the heads up at all!! I’m so grateful. Sorry one more question, sorry I have so many! Once he gets good support for his neck and can sit up, he’ll really enjoy reading, but as his arms are quite weak I’m thinking that he won’t be able to look down to read the book on his lap, so what could we use as something to stand his book on? Actually whilst typing this I just thought maybe a music stand could work 🤔 Is this something that people use? I’m just looking for any tips that would make life easier for him. Thank you again I appreciate this advice so much xxxx

[Ellie]

Hi Jody,

I know what you mean about your Dad not wanting to make a fuss - my parents are the same!! You may find yourself having to be that squeaky wheel more & more Your parents parents must be rightly proud of you.

Those soft foam collars are for mild muscle weakness as they don't give much support and often they end up pushing the head forward, which isn't great.

The HeadMaster is pretty good but, as your Dad found, can be uncomfortable. (I wore one for a few years before I got my HeadUp support) One thing about it though - many people don't know that the metal parts should be adjusted to size by gently pulling apart or pressing together. I wonder if anyone bent it to size for your Dad? It should provide better support than the foam collar whilst waiting for an alternative one.

You definitely should not have to pay for a HeadUp collar! If you think it'd suit you Dad, ask his community or clinic OT to order one. It comes 'flatpacked' with different types and strengths of support/stays, which need to be put where support is needed so preferably by an OT or physiotherapist (no disrespect to you Jody!)

I had this 'Aspen' collar for a while too and it gave good support which, for me at least, was too physically restrictive, but might suit your Dad.

Aspen collar.jpg

Have a look too at the Miami collars.

Using a music stand to hold a book is a great idea. I eventually had to migrate to e-books - not as tactile as turning over a paper pages obvs, but one still has to 'turn the page'. When I lost the ability to tap the screen, I'd click a button with my knee instead. I guess what I'm saying is that, even if his hands fail completely, he'll still be able to read, albeit not from traditional paper books...

Take care.

Love Ellie.

[Olivia]

Hi Jody, So sorry about your dad. My mum was diagnosed with ALS this April and like you this is all so new and scary to us. She hasn't even seen the doctor in person because of Covid19.

I too looked into CBD oil and did a LOT of research. I got in touch with a professor in this field as I wanted to know if these products could really help and where to start when looking for them. I'll give you as much info as I can, do bear with me as it can be a tad confusing when it gets to measurements.
Firstly there are two types of cbd oil. Both are legal in the UK. Broad spectrum (thc free) and full spectrum (0.2% thc)

It can be really overwhelming to know what strength oil to purchase and how many drops to use. Many of the sites recommend starting with the 5% oil (this is infact 2.5mg per drop). The professor said for mums condition she wouldn't get any benefit from that so to start with a 15% Full Spectrum oil. (7.5mg per drop). He recommended 60mg-200mg a day but NOT to exceed 200mg ever. 60mg would be 8 drops so mum was nervous to start on that so we started with just 30mg (4 drops). She is now on 45mg (so still not near the recommended amount) but she is definitely sleeping easier after she takes the drops at night. It takes a while to get into your system so we're still seeing if it has other benefits. You can't live two lives to see exactly how it helps, but from my research I found enough to convince me to give it a try with mum.

The professor advised that there are many sites and it's hard to know how good their products are. He recommended the following sites:
Hapi Hemp, Wholy Me and Apothem. I decided to go with Hapi Hemp after comparing websites. So far I'm really impressed with their products and my mum thinks the comfort cream in particular works wonders of her stiffness and aches.

Hope this helps and any questions let me know.

Best Wishes,

Liv

[pauljameson]

Hey Matthew, I too have bulbar onset MND, diagnosed in 2017. A friend of mine gave me some CBD oil, but I've not tried it yet, but keen to do so! I'm interested that it helps you sleeping. What dose do you take and how do you take it? Cheers, Paul

[matthew55]

Hello Paul, First thing is to have a drink ready to swallow right after swallowing the oil. It tastes horrible! I put two drops under my tounge about an hour before bedtime. Simple as that. Stay Strong?

[pauljameson]

Hey Matthew, sounds good. What strenghth do you take? I've just ordered 3000mg. I read somewhere you should keep the drops under your tongue for 90 secs...but I guess not!

[Jody123]

Hi Jody, So sorry about your dad. My mum was diagnosed with ALS this April and like you this is all so new and scary to us. She hasn't even seen the doctor in person because of Covid19.

I too looked into CBD oil and did a LOT of research. I got in touch with a professor in this field as I wanted to know if these products could really help and where to start when looking for them. I'll give you as much info as I can, do bear with me as it can be a tad confusing when it gets to measurements.
Firstly there are two types of cbd oil. Both are legal in the UK. Broad spectrum (thc free) and full spectrum (0.2% thc)

It can be really overwhelming to know what strength oil to purchase and how many drops to use. Many of the sites recommend starting with the 5% oil (this is infact 2.5mg per drop). The professor said for mums condition she wouldn't get any benefit from that so to start with a 15% Full Spectrum oil. (7.5mg per drop). He recommended 60mg-200mg a day but NOT to exceed 200mg ever. 60mg would be 8 drops so mum was nervous to start on that so we started with just 30mg (4 drops). She is now on 45mg (so still not near the recommended amount) but she is definitely sleeping easier after she takes the drops at night. It takes a while to get into your system so we're still seeing if it has other benefits. You can't live two lives to see exactly how it helps, but from my research I found enough to convince me to give it a try with mum.

The professor advised that there are many sites and it's hard to know how good their products are. He recommended the following sites:
Hapi Hemp, Wholy Me and Apothem. I decided to go with Hapi Hemp after comparing websites. So far I'm really impressed with their products and my mum thinks the comfort cream in particular works wonders of her stiffness and aches.

Hope this helps and any questions let me know.

Best Wishes,

Liv

Thank you for this information, it has been so helpful. I have been looking into it and hapi health and have made an order. I’m sorry to hear about your mum too xxxx it’s horrible isn’t it 😔