Travel Insurance Query

I'm sorry that your mother is having problems with confidence since she was diagnosed. It is very nice that you and your family support her and take her to a vacation.
The support of loved ones always motivates and makes you think that life is not so bad. My grandmother wore a knee brace when she was traveling with my grandfather. You can find more information about it at https://dunbarmedical.com/product-ca...upport-splint/.
Unfortunately, she didn't find a company that would help her, so she had to travel without any support.

[Ellie]

Dear Streetwise,

I did not criticise you. I did not want Luke left feeling more anxious about his mother, so I gave my opinion on your suggestions to allay his fears.

I would have offered you the same advice if you had been in the same position.

Best wishes,
Ellie.

Streetwise MND is frustrating, as you know from caring for your Mam. I know nothing about autism, but after watching 10 minutes on NHK I learned that the frustration in autism is much worse than MND frustration. My frustration comes from not being able to talk, walk and things I took for granted. As I understand it autism sufferers brains are bombarded by confusing streams of information that you have to decipher, like you are in the centre of a circle of people who all talking to you at the same time about different things. It must have been extremely hard looking after your Mam. I gather you have difficulty talking face to face with strangers and don't like being touched. I think this forum is good for you as it gives you a link back to your Mam. Regular members know where you're coming from but new members, who may be newly diagnosed, who will be trying to get their head around the diagnosis may not clearly understand your concern in the unusual way you phrase your advice and information. Maybe you could try putting just one bit of info in your posts. I notice some members insert repeat information about themselves on the footer, which gives readers some helpful insight. I don't know how to do it, but it would be something like. 69 years old, diagnosed 2008 mnd pbp, 4 kids 8 grandkids, Drove trucks and played rugby union.
Your one could mention you being autistic etc. Streety, I hope you are not offended, in any way by this message from someone who knows very little about your condition. Below is programme I watched:

https://www3.nhk.or.jp/nhkworld/en/vod/medicalfrontiers/3004473/

I have corrected 2 typos and messed it up

if you want me to stop posting on this forum that is your choice as I've said in the past this forum is not a place for people who are autistic so if you are autistic and a carer go somewhere else

I didn't ask for your opinion and I don't want it now and I don't worship the medical profession like you do you only time you ever bother to contact me is to criticise me desist from communicating with me

[MNDConnect]

Hi Luke

I don't think that mono myelic (focal) onset does fall in to the standard MND category. MND can be very confusing as the term "MND" is used for a variety of things. In the UK, MND is considered ALS, PLS, PMA and PBP. There are lots of other conditions which are diseases or conditions of the motor neurones which aren't classed as "motor neurone disease" and have a different prognosis to the typical MND.

I am sorry as this must all be so confusing. If they are uncertain of the diagnosis, they do sometimes use time to try to make a diagnosis. People are often asked to "watch and wait" to see if/how symptoms progress before a diagnosis can be made. Especially with the rarer slower forms of MND like PLS.

If you would like to discuss this some more then please do give us a call on 0808 802 6262. It's a Freephone number from landlines and mobiles. It's a small team. There are only 5 of us but we all have healthcare backgrounds and are always happy to answer any questions.


Thank you every one for your help. As mentioned, internet searches can often result in unreliable information which can be harmful and upsetting. Interpretation and clarification of symptoms, diagnosis and tests is always best left to the neurologist.

Best Wishes

Rachel

[Ellie]

Streetwise, it's best to leave the interpretation and discussion of complex neurological conditions to medical experts. As we all know, search engines return results from a myriad of sources - some of which are reliable, some of which are not.

You suggested Luke's mother may have late onset SMA, an inherited condition with obvious genetic consequences for her biological children and, as such, it is irresponsible, and possibly cause upset, to make that suggestion. You also suggest that she may have MMA, a condition affecting only males aged 15-25.

Please be aware of what you post; if you're in any doubt, it's safer not to post information which may be incorrect or misleading.

Thanks,
Ellie.

found the name monomelic focal or segmental spinal muscular atrophy , when I type in to Bing and it came up as late onset spinal muscular atrophy , also monomelic amyotrophy.

Hi all,

Many thanks for all the responses, greatly appreciated.

My mum found a company called Free Spirit in the end which offered her insurance for the week for £118, I am sure if she shopped around a bit there might have been something available, but as her confidence has been massively hit since being diagnosed, just the fact that she's even considering going on holiday is a pretty big deal :-)

Also found out what her current diagnosis is - mono myelic (focal) onset - still trying to research this as it doesn't seem to fall under any of the standard diagnosis' that MND list (like ALS, PLS etc) but at least it's something to go on.

Thanks again

Luke

[MNDConnect]

Hi Luke

We don't specifically recommend any travel insurance companies but MND Connect have created a document which lists travel insurance companies that people have told us that they have had success with. We regularly update the list based on feedback that we receive.

It might be worth trying these companies to see what they can offer. If you PM me with your email address or email me at [email protected] then I will send the list to you.

Best Wishes

Rachel

[philipb]

Hi Luke. I have used a company called Insurancewith on a number of occasions since my diagnosis and found them very good.

talk to MND connect !you need to make sure the policy would cover a specialist unit if your mother needed specialist treatment, some treatment in Spain is free ,the rest is at a reduced cost ,if your mother needs a doctor and you ask the hotel to contact one that would be considered a private consultation and if you get a EHIC card !which is for EU Nationals !it covers basic treatment and if you only had that you have to phone 112 or 061 in Spain and ask for 'urgencias 'that is the A&E department!

[Annb]

I was diagnosed in August and wanted to go to Malta in October. I found that my bank offered free travel insurance with my account. They asked me basic questions about my MND and the stage I was at but not which type. I was then asked to pay a supplement which covered me for multiple trips in Europe for the whole year. (This was about 80pounds) I did the whole thing over the phone. Might be worth checking this out.
Good Luck!
Annb

Hi there Luke, not sure if this will help but I thought it was worth a mention.

If your mum has ever been in the Civil Service she would be able to buy an annual holiday insurance through CSIS & backed by AXA , costs under £300 for the year

All illnesses are covered as long as your doctor says you are fit to travel. No medical screening . Hope this might help. Maeve

Hi team,

I know there have been queries about Travel Insurance asked in the past - however this is a slight variation.

My mum is looking to travel to Europe but her usual insurance company won't cover her now that she has MND. She approached 2 other companies and they said they need to know what type of MND she has.

The specialists believe my mum has PLS - however they can't give her an 'official' diagnosis of this until she's had it for around 3-4 years (I guess that's understand able to avoid being sued or giving wrong information, etc), as such my mum isn't sure what to do.

Are there any insurance companies available that will insure you if you don't have an official diagnosis of the type of MND you have? (Preferably one that isn't going to cost the earth for a weeks holiday to Spain).

If anyone has any recommendations or any experience with this, any advise would be greatly appreciated.

Many thanks

Luke