Desperately Seeking Help for my Brother

[KeithD]

......he still occasionally forget names and also other words when in the middle of a sentence.....

Sounds like a normal guy now

Glad he's improving .... he must of thought the world was ending when he was taken out into todays weather

[Lancashirelad]

Thats good news Rosie I will say a prayer for your brother too and hope his health continues to improve.

[Rosie1958]

Thats good news Rosie I will say a prayer for your brother too and hope his health continues to improve.

Thank you so much Lancashirelad, he needs all the help he can get

Sounds like a normal guy now

Glad he's improving .... he must of thought the world was ending when he was taken out into todays weather

Thanks to you too Keith and you're right ........ he's living nearly 50 miles away and I don't know what the weather was like there but it was certainly extremely windy here in Cambridgeshire this afternoon!

[raynaputi]

I'm glad your brother is getting better each day Rosie Please extend our regards to him and tell him that all your friends here are praying for his fast recovery. I'm sure he'd be pleased to know that there are people praying for him and wishing him all the best.

[mickcant]

Thankfully his improvement is coninuing from all I have read
Keeping my fingers crossed for all of you.
Mick.

[Doc Alan]

More good news about your brother .
I'm sure your friends who have been following his progress would also wish you all the best in your own life and thanks for caring about other forum members since you joined last autumn .

[Rosie1958]

Thank you so much for your very kind comments Rayna, Mick and Doc Alan, you are all so kind. I'm glad I found this forum last September, I have learnt so much and come across some truly wonderful and selfless people.

I went to see my brother after work this evening and found him sitting in the middle of the dinning room positively beaming from ear to ear in the wheelchair . After tea, I wrapped him up and wheeled him into the garden at the nursing home; it was so lovely for him to be in the fresh air, listening to the birds twittering - something that we all take for granted.

I have told my brother about this forum and often tell him about the comments, prayers and well wishes being received. I hope that one day I will be able to show him the website and that he will be able to read them for himself. In the meantime, it appears that the prayers being said for my brother are having some affect as I was also told when I arrived that he took 4 wobbly steps with the assistance of two of the staff earlier today ........... I am over the moon with his progress this week !!! .

[Arthur Little]

Rosie ... I'm very conscious of the fact that you were one of the many kind people who congratulated me on my recently notching-up 8,000 posts on the forum. But any "attainments" of this sort pale into relative insignificance when compared with yours and your brother's real-life achievements.

Thanks to a uniquely-admirable combination of your selfless, unflagging devotion to the ministrations of his everyday needs, the constant, unfailing love of his partner ... and, not least, his own "fighting spirit" - born of a steely determination - all the indications ARE, that your brother is making remarkable progress.

And amazingly ... you manage to cope with the demands of a full-time job - and still find time to willingly offer wise counsel to others here. You're truly an inspiration to us all, Rosie!

[Rosie1958]

Bless you Arthur, thank you so much I really do appreciate your comments and also the rep you have given me. I was warned that the road to recovery would be a very long one, if at all, and I will not give up hope nor trying to help my brother as much as I possibly can for as long as I can breathe.

Being an expat, living in the Philippines for over 15 years and having 2 ex filipina wives and a current partner who is also filipina, my brother obviously has a few things in common with a lot of the guys who use this site. I just hope that lessons can also be learnt from his terrible experience by others, ensuring that should things go wrong whilst living abroad, that the correct insurances are in place and that there is a support network available to help should it ever be needed ........ family, friends, employer, etc.

Thank you to everyone for reading and contributing to this thread. I will continue to post any progress

[Rosie1958]

My brother’s progress has continued over the past 2 weeks and he is doing well. He is now regularly taken to a public park in his wheelchair where he enjoys watching the activity around him as well as visiting the ice cream van. This weekend, he was also able to watch his son playing on the play equipment, which he really enjoyed. He’s made a mental note of the name of the local pub which we pass on the way to the park, some days he remembers it and others he doesn’t.

As the wheelchair has increased his mobility, he’s been making friends in the nursing home with some of the residents that are a bit more compos mentis than those in the young persons dementia unit (who are all under 65). His latest new friends are two lovely spring chicks who are both over 80 years old and they were all having a whale of a time in the garden when I arrived mid week. It was wonderful to see!

It’s been a long time since I’ve had to handle a wheelchair but it has given me a new insight into the state of some of our footpaths and how difficult it is to get on and off them sometimes. Also the difficulties in taking a wheelchair into a shop that has a step ...... things taken for granted by the more able of us, but a real challenge for those that aren’t.

[Doc Alan]

We are following your brother's progress with interest Rosie . There are wise words also in your posts, and it's good to see you haven't lost your sense of humour .

[Aingeall]

Hi Rosie! I searched for you here in the forum after your heartwarming post in my thread...I really appreciate it. It may be a little bit late for me to post here...I did try to read the entire thread & I was really touched with the love you have for your borther. My prayers are with you both...one step at a time & he'll get there.

[Rosie1958]

Firstly, thank you so much Doc Alan and also Aingeall for your very kind words. It’s been 4 weeks since I last posted here so for those following this thread, I’m delighted to give the following update:

After months of my badgering for help, a few weeks ago my brother started receiving a weekly visit from physiotherapist with the objective of providing exercises to increase his mobility. Within 2 days of the first visit, he was taking his first steps with a walking frame! Shortly after that, he started taking steps holding the frame at shoulder height as he couldn’t work it properly, bless him. He looked very comical but was so pleased with himself!

The muscles in his trunk area were too weak to hold him up but there was no stopping him. The physiotherapist gave him some new exercises to strengthen his trunk and he’s pretty much ditched the frame now and just hangs on to handrails placed strategically around the building. His walking is improving each time I see him and although he is dragging his left leg behind him and he gets tired very quickly, he seems to be almost sprinting about . I am so proud of him! The next step (pardon the pun) will be to get a walking stick as that will be far easier for him to handle and of more use.

[Terpe]

Thanks for the update Rosie.
It's amazing to hear how quick progress can be made.

[Rosie1958]

Thank you Terpe

I've made a little more progress this week with my brother. I managed to get him into my car and took him for a short drive - he loved it! We stopped at a fast food chain and he managed to successfully walk into the restaurant. He couldn't sit still and wandered off twice so I had to watch him like a hawk whilst I queued for food. I was a bit worried that he might receive an unkind comment from someone whilst he was wandering about as he looked mentally disabled but all was fine. He was beaming when we left the restaurant

When in Philippines and the Far East before this awful illness happened, his treats were cigarettes, red wine and san miguel beer, which he consumed in excess and blamed the weather. Now, it's ice cream ............ bless him

[KeithD]

I was a bit worried that he might receive an unkind comment from someone whilst he was wandering about as he looked mentally disabled....

I look like that normally

[raynaputi]

I look like that normally

[Tawi2]

Glad he enjoyed his trip out Rosie,hang in there

[Terpe]

Thanks Rosie for another heartwarming update.
BTW, how are his wife and son managing with their new life here in UK??

[imagine]

its realy good to read how your brother is progressing, god bless

[fred]

Hey Rosie..

I wish I had a sister like you.

[Arthur Little]

Hey Rosie..

I wish I had a sister like you.

I wish I had HAD a sister ... ...or do I?

It most certainly WOULD'VE been lovely to have had a sister like Rosie ... !

[raynaputi]

I agree with you Fred

[Rosie1958]

Thanks for your kind comments Fred and Rayna.

It’s been a few months since I last posted an update so I thought I’d do so now.

I am sorry to say that my brother appears to have been forgotten by the local health authority. He has been in the nursing home for nearly 11 months now and hasn’t received one visit from the local health authority continuing care department. I have been in contact with them and they apologised stating that they are still waiting for his file to come through from another office (it’s only been 11 months). My patience is waning a bit thin in view of the time that has already elapsed and the length of time left on the settlement visas.

Unlike the rest of the residents at the nursing home, my brother’s health has improved since he has been there. He still has some complex needs and is unable to look after himself but I feel that consideration needs to be given about his suitability for long term rehabilitation, maybe even at a specialist brain injury unit. I’m hoping that his GP might refer him for a brain scan to assess the extent of any potential healing process to add weight to this. I have also asked to be present at any assessment that is undertaken by the health authority about his future care/ funding and will keep badgering them until it has been done.

On a happier note, my sister-in-law and nephew are returning to the Philippines shortly for Christmas, she misses her family so much and it will be a well-earned break for her.

[grahamw48]

I do hope everything starts to come together for your brother Rosie.

Your care for him has been truly inspirational, and I take my hat off to you.

I wish you, your brother and his other loved ones all the luck in the world.

[Arthur Little]

I do hope everything starts to come together for your brother Rosie.

Your care for him has been truly inspirational, and I take my hat off to you.

I wish you, your brother and his other loved ones all the luck in the world.

I echo Graham's sentiments, Rosie ... as do ALL of your many friends on the forum; so much for updating us on your brother's progress.

[sweetnote143]

God bless you, Rosie. You're a selfless sister and I know your brother knows that. I pray for the total recovery of your brother. Keep your faith strong and your hopes up, nothing is impossible.

[andy222]

Hi Rosie I have just read this post being as I am a relitavly new member. You have amazing courage. I am speechless at what you have gone through. Your a rock to your brother. The health service is changing now and your GP pulls most of the strings. He should be able to refer you to the appropriate departments to care for your brother. God bless and good luck to you and your brother. I will be watching this post from now on.

[Rosie1958]

Graham, Arthur, Sweetnote and Andy, thank you so much for your very kind and appreciated comments.

It’s been a couple of months since my last update so here is another.......

My brother was assessed in December to see whether he still qualifies for Continuing Care at the nursing home. When he first went there last year, he had FIVE major areas of need. Now he has been assessed as having TWO. This means that although there has been some definite progress, he is still bad enough to qualify for Continuing Care that is paid by the NHS and has secured a place at the nursing home for another 12 months.

I have mixed feelings. On the one hand, I am glad that he has the funding to look after his care but on the other hand, I am concerned that he may not given the opportunity / help to progress further, particularly as GPs appear to avoid getting too involved with care/ nursing home residents. Due to his brain damage, he still has psychological and behavioural difficulties, particularly with his cognitive ability. He doesn’t have any sense of danger and can’t look after himself. He constantly wanders off and he still has double incontinence which causes no end of problems for him. He struggles with his left hand side, there is a noticeable weakness. His vision on the left is affected, when for example he is trying to put a glove on his left hand he struggles and he can’t hold a fork in it. He is becoming far more emotional and was understandably very distressed when his immediate family returned to the Philippines for Christmas as he was unable to see them, god bless him. (They are now back)

On a positive note, his walking and posture is now much improved. He no longer looks gaunt and has put on a bit of weight. His speech and ability to hold a conversation has improved but he can’t concentrate for long and constantly walks off. However, he appears quite clever at avoiding certain questions if he can’t remember the answer. His long term memory has definitely improved as he can now recall many of his life experiences and there is evidence of short term memory improvement too.

I have discussed the long term possibility of rehabilitation with the Continuing Care Specialist and I have managed to talk her into referring my brother to a local hospital for an assessment to consider whether he is now suitable for some neuro-physiotherapy . I have asked to be present at the assessment as he doesn’t always co-operate with strangers in a strange environment and I am keeping my fingers crossed that he might be suitable for the one- day- a week session. Fingers crossed .

[Doc Alan]

It’s been a couple of months since my last update so here is another.......
Fingers crossed .

Thanks Rosie, I'm sure all members also have their fingers crossed for your brother.
I was in the Philippines and missed your last update. Since you first posted over 15 months ago you've had 180 replies and approaching 23,000 views. It shows the interest and support your thread has generated .
It would be understandable if neither you nor most members had ever previously heard of the condition affecting your brother. You are now an authority, but for other members, just a brief reminder : ADEM ( acute disseminated encephalomyelitis ) is a rare type of " demyelinating " illness due to damaged myelin. That's the " white matter " protecting nerve fibres. Multiple sclerosis is the commonest type. Acute = sudden; disseminated = widespread; encephalomyelitis = inflammation of brain and spinal cord. The cause of ADEM is often not known, although it may follow an infection.
Early treatment is aimed at suppressing the inflammation. Additional treatment is symptomatic and supportive - what your posts have shown so clearly is just how true that is ... well done Rosie .