16 replies to this topic

[Nicky]

My son has just had an accident and is about to be moved to Stoke Mandeville Hospital. He is going to be over 100 miles from his wife and family. Does anyone have any contacts for accommodation she and their 7 year old daughter might be able to use for their visits? Any ideas would be gratefully accepted. I am sure others have faced the same problems
Thanks
Nicky

[Gary Anderson]

Nicky

Welcome to the boards. This is a great site. I was in Stoke around 16 years ago. I got great care/rehab.

As regards accommodation, you could try the internet for B&B or you could ask the hospital if they can recommend somewhere. In cases they do this. As they are used to dealing with visitors from far and wide.

Hope your son is not too badly injured and that he makes a good recovery.

God bless.

Gary

[gazrobsuk]

I was in Stoke M in 2000 for 7 months & my wife commuted for up to 1.5 hrs each trip/leg & that was after she finished her full time job at 5pm which was a killer 6 days a week (god bless her as it kept me going) but I recall I had like a primary nurse & used to have meetings with somebody whose job title I forget but like a focal manager for you so these guys would be best to advise as yours is not an unusual request & I'm sure they have a list of B&B's etc or other advice.

From my experience it's a 'bad' time to get through & friends & family saw me through when I wanted to give up so IMO it's vital to have this support.

Gary

Nicky, on Mar 25 2006, 12:41 PM, said:

My son has just had an accident and is about to be moved to Stoke Mandeville Hospital. He is going to be over 100 miles from his wife and family. Does anyone have any contacts for accommodation she and their 7 year old daughter might be able to use for their visits? Any ideas would be gratefully accepted. I am sure others have faced the same problems
Thanks
Nicky

[Nicky]

Nicky, on Mar 25 2006, 01:41 PM, said:

My son has just had an accident and is about to be moved to Stoke Mandeville Hospital. He is going to be over 100 miles from his wife and family. Does anyone have any contacts for accommodation she and their 7 year old daughter might be able to use for their visits? Any ideas would be gratefully accepted. I am sure others have faced the same problems
Thanks
Nicky

Dear Gary,
Thanks for the information. We have been in touch with PAL at the hospital and apparently there are 4 rooms available for families to stay in but parents of young children are quite rightly given priority. We have searched the internet for B&B's etc so will investigate them. The other alternative might be to rent a flat nearby as it would save on hotel & restaurant bills too as well as take the stress away of having to think about booking accommodation each time we make a visit. We will see. It is certainly a difficult time but we are all pulling together for him and he is being very positive. He has T10 + severe spinal cord injuries. Prognosis unknown but we are hopeful.
Nicky

[Gary Anderson]

Quote

He has T10 + severe spinal cord injuries. Prognosis unknown but we are hopeful.

Hi Nicky

Glad to read about your son. Hopefully you will be able to find something close-by. I was luckier. When I was in Stoke, my parents travelled from Stanmore so although quite a distance, it was manageable.

You said above "prognosis is unknown but you are hopeful." Well, my cousin is also a T10 para and he said that - dont quote me though - the prognosis he was given was he could expect full head and neck movement with normal muscle strength. Normal shoulder movement. Full use of arms, wrists and fingers.

Partial paralysis of lower body and legs. Upper body strength and balance will vary depending on level of injury, but the lower the level, the stronger the upper body strength and balance.

A manual wheelchair can be used - although my cousin has special tyres for rough ground. He also has the
Ability to transfer independently from bed to chair, and chair to car. Depending on upper body strength, [He has T10 + severe spinal cord injuries. Prognosis unknown but we are hopeful.


Full head and neck movement with normal muscle strength. Normal shoulder movement. Full use of arms, wrists and fingers.

Partial paralysis of lower body and legs. Upper body strength and balance will vary depending on level of injury, but the lower the level, the stronger the upper body strength and balance.

A manual wheelchair may be used for everyday living, with the ability to go over uneven ground.

Ability to transfer independently from bed to chair, and chair to car. It may be possible to transfer from floor to chair depending on upper body strength, in addition to transferring from sitting position to standing frame independently.

You can drive a car adapted with hand controls. Load your wheelchair into car independently.

My cousin leads a full life with his wife and children and there is nothign he cannot do. Look forward to hearing that your son soon improves.

Regards.

Gary

[sjean423]

Dear Nicky,

I can't respond as to the accomadations, as I live in Connecticut, USA, but you seemed worried about his prognosis. I am a T7-8 para, which means he should have MORE abilities than I do. I was injured just a year ago, and at this point I am pretty independent. I pretty much have full control of my body from the waist up, just some weakeness in my abdominal and side muscles, and a bit of balance problems when sitting unsupported (like on the side of a bed). Dressing, showering, grooming, urinary and bowel care, are all on my own. I can do a lot of the housework (darn!) and meal prep as long as someone is around to hand me things from a high shelf (we still need to reorg the kitchen!). I haven't started driving, but I can get in and out of the car with just a little help, and based on what I have seen will certainly be able to transfer in and out of a car on my own, dismantle the chair and put it in on my own, and drive off. I have seen it done and it is rather facinating. Right now we have a mini van, and I still need some help, do to the height. We need to trade it in for a regular sedan. I can transfer independently from bed to chair to sofa, etc. Right now I still use a transfer board to bridge the gap, but am working in therapy to build up my upper body strength to just "pop over" You son probably has the benefit of greater upper body strength pre-accident than I, just by being male, so this should come right along. Right now, at 1 year post accident, I can do SO MUCH MORE than at the beginning, and everyone tells me that things continue to improve. Good luck with your son and his family. Support from MY family has been so important to me during this time.

[miss piggy]

Nicky, on Mar 25 2006, 01:41 PM, said:

My son has just had an accident and is about to be moved to Stoke Mandeville Hospital. He is going to be over 100 miles from his wife and family. Does anyone have any contacts for accommodation she and their 7 year old daughter might be able to use for their visits? Any ideas would be gratefully accepted. I am sure others have faced the same problems
Thanks
Nicky

Hi Nicky My bother-in-law was in Stoke Mandeville Hospital,18 months ago.We found it a great hospital.My brother-in-law is a T10 with lots of orherpetic problems in upper part of his body . The physiophapist called Dot there was amazing she help my brother-in -law regain strentgh and movement ,we never thought he would ever have in his upper body. We had to travel 50 miles to the hospital and would usually arrive about tea time, the staff informed us we could order food locally and have it delivered to the ward , which we did every sunday so we could all eat together as a family , which i know meant a lot to my brother-in -law .There is a canteen there but he was bed bound. Also they have a little park area for the children . There is a computer room there now ,so hopefully he will be able to make use of that in time. They also have classes there for the patients to go to ,and also have them for the family, we all learnt so much by going to them. There is also a adapeted van which they let us use a couple of weeks before he came home ,so we could go out for the day .SORRY if i am going on but i am just trying to give you all some light at the end of that tunnel .WISHING YOU ALL THE BEST SORRY ABOUT THE SPELLING

[Nicky]

Dear Gary
Thank you for such useful information to everyone who has responded, you have all overcome such incredible setbacks. We are really encouraged by all the positive comments and tips. My son is very strong in his upper body (he is a roofer) and is already transfering from bed to wheelchair. He has full movement from his waist upwards but nothing below. The problem at the moment is keeping his spirits up, mainly going down through not knowing how long it might take (if ever) to regain any control over his bladder, bowel and legs. He is still waiting to be transferred from the acute hospital where he had his operation to the spinal unit. They don't seem to be able to tell us when he will be moving. This is a real downer as they are not geared up for any rehab and he feels he is wasting time. I know that he will be taught about the bladder and bowel control when he gets to Stoke Mandeville as I have been reading others' stories on this wonderful website. There is so much help available and we are slowly finding out all sorts of things. One thing though - how much of the recovery process is will power and how much is nature and rehab do you think?
Would be interesting to know.
Nicky

Quote

Hi Nicky My bother-in-law was in Stoke Mandeville Hospital,18 months ago.We found it a great hospital.My brother-in-law is a T10 with lots of orherpetic problems in upper part of his body . The physiophapist called Dot there was amazing she help my brother-in -law regain strentgh and movement ,we never thought he would ever have in his upper body. We had to travel 50 miles to the hospital and would usually arrive about tea time, the staff informed us we could order food locally and have it delivered to the ward , which we did every sunday so we could all eat together as a family , which i know meant a lot to my brother-in -law .There is a canteen there but he was bed bound. Also they have a little park area for the children . There is a computer room there now ,so hopefully he will be able to make use of that in time. They also have classes there for the patients to go to ,and also have them for the family, we all learnt so much by going to them. There is also a adapeted van which they let us use a couple of weeks before he came home ,so we could go out for the day .SORRY if i am going on but i am just trying to give you all some light at the end of that tunnel .WISHING YOU ALL THE BEST SORRY ABOUT THE SPELLING

[gazrobsuk]

Hi Nicky,

Well one thing is for sure whatever happens if he has full use of his upper body he'll be independant & be able to lead a full even unassisted life.

IMO, the willpower thing is useful/important for getting the best out of what you have so I always advise to push to your limits & don't give up. I've seen people who write that because they are strong willed they were able to recover more & others are just lazy blah but I think that's a bit of a myth (some are lazy) as if you aint got it no amount of willpower will improve it as I'm sure others will testify, but as I said if you fight hard & are really strong willed/determined with rehab etc you will be amazed at what can be done & he will get the best out of his given condition.

He's still in the recovery phase so there is a lot of unknowns & everybody is different so no one can predict for certain what will return or not so there are only approximations by folks. I think it can be 6-12 months before he knows what's what with his condition after the shock recovery blah. I wish him well & to try really hard. I've come a very long way personally (see my web) but that's just me & I'm luckier than most quads.

Edited by gazrobsuk, 30 March 2006 - 01:33 PM.

[Gary Anderson]

Hi Nicky

The other Gary (Anderson) here.

Regards recovery and willpower - I had absolutely none. I found when I was in Stoke that I did not quite "fit in". My injury was cauda equina which is the horses tail of nerves at the base of the spine, so although my legs can move and feel, they have forgotten how to walk. HOwever, 16 years on from my accident, I have had treatment to allow me to walk with 2 sticks and I have to say that I have recovered some control over my bladder/bowels, HOWEVER, I MUST STRESS that my injury is completely different from most paras. Normally, when the cord is damaged you dont usually have much control - not the same as myself.

How long is it since your son's accident? What is taking so long to get him transferred to Stoke?

Sorry for asking but you see I was transferred immediately after my accident.

Regards.

G Anderson

[miss piggy]

Hi my brother-in-law had to wait 4 weeks to move from St Georges Hospital in London to Stoke M. There was no beds .He was only told the night before he went ,he was going .He was very low when he arrived there,but in no time he was fine ,enjoying all the classes (table tennis , archery, ) and lots more . Just trying to give you some ideas so, hopefully it will give he something to look forward too.

[Nicky]

Dear Miss Piggy,
Thanks for the encouragement. I guess it is hard to know when a bed will become available but he is trying to be patient. He just wants to get on with the rehab so it is hard to wait. Don't want him to get too low but he knows there will be loads to do - unlike where he is now where he doesn't even have access to a TV or phone.
We keep hoping for a place.
Nicky

[Nicky]

He had his accident 2 and a half weeks ago. He has had his spine put back together surgically but now wants to get on with the rehab. Guess they have to wait for a bed when someone else is fit enough to move. It's a long waiting game.

[dom]

hi nicky maybe you will get this too late but i was in stoke in 2002 and i had relatives stay for a weekend in their purpose built bungalow on the grounds tell your son to enquire about it early as it gets booked p quickly- it is free
Or altrnatively they have cheap nurses quarters available sometimes i also stayed a night there
dom

[miss piggy]

Nicky, on Mar 31 2006, 05:52 PM, said:

He had his accident 2 and a half weeks ago. He has had his spine put back together surgically but now wants to get on with the rehab. Guess they have to wait for a bed when someone else is fit enough to move. It's a long waiting game.

HI Nicky
was just wondering if there is any news on a bed at stoke m, for your son ,hope things are moving forwards for you all

[Nicky]

miss piggy, on Apr 28 2006, 11:43 AM, said:

Nicky, on Mar 31 2006, 05:52 PM, said:

He had his accident 2 and a half weeks ago. He has had his spine put back together surgically but now wants to get on with the rehab. Guess they have to wait for a bed when someone else is fit enough to move. It's a long waiting game.

HI Nicky
was just wondering if there is any news on a bed at stoke m, for your son ,hope things are moving forwards for you all

Thanks for the enquiry. Yes he got a bed finally at Stoke Mandeville and has been there for 3 weeks. He is making good progress although it is very slow of course. He is very down when his wife and daughter have left after a weekend but that is to be expected. He has made some good friends and I'm sure they talk about football most of the time!! At least it takes their minds off their injuries.

[miss piggy]

Hi Nicky That's great news his got a bed ,hopefully things can move forward now .My brother-in-law used to get really down when we left him , but over the time he made some really good friends and they all used to surport each other when there loved ones left ,and became another little family .Please keep us posted how things are going .Wishing you all the best