Cherry

[Cherry]

Hello I'm brand new to the forum. My name is Cherry and my family and I live in Nottingham England. My husband was diagnosed only 17 days ago and we're still very upset and trying to come to terms with everything. He has P.B.P. In 2003 he had Cancer of the Larynx, although a none smoker, and had radiotherapy. He was cleared last November but was not discharged from E.N.T. He had a swallowing test, drinking water whilst a camera was down his throat, and given an appointment to the neurology dept. The neurologist said he thought he had A.L.S. and he was given an M.R.I. scan. After about five weeks of waiting my husband, Brian, eventually got to see the neurologist who told him he had A.L.S. P.B.P. I keep wondering if the two conditions are related in some way-Cancer and A.L.S., or was the radiotherapy in some way to blame. Yesterday he went back to the hospital and was told he breathing wasn't very good, and when Brian asked what he thought his prognosis was, was told by the neurologist that it could be a matter of months. This has upset us so much. At his next visit they are going to check to see if he has put on any weight, if not they want to insert a peg. He only weighs 9 stone 7 pounds and is six foot tall. I would appreciated some feedback if possible as I feel like I'm going mad.

God bless all,
Cherry.

 

[thelma313]

Hi Cherry, welcome to the forum but sorry you had to come looking for us. First of all let me say, I know how upsetting the diagnosis is at the beginning and I am so sorry that you are receiving this sort of feedback from your neurologist. If I have any advice to give, it is do not wait to see if your husband puts on any more weight, get the PEG now. If he has PBP then he will need it so why wait? The stronger his breathing is the better. Secondly, does he have a Bipap machine to help him breathe? It is a non-invasive breathing aid and is very necessary. It helps a person with ALS to inhale and exhale and many people who use one have reported improvements in FVC (forced vital lung capacity.) It is a reading given in a percentage. Do you know what your husband's FVC is?

As for the neurologist saying it could be a matter of months, I say, no two cases of ALS are exactly the same and it is much more difficult to predict than most other diseases. If your husband gets a PEG and a Bipap right away, he will probably feel better and may even get stronger and far outlive that doctor's prognosis. You will get a lot of feedback here so hold tight, because there are some of the most helpful and generous people you will ever meet on this forum.

Feel free to ask as many questions as you have. Nothing is taboo! Luckily you have stumbled upon a great support network here so you are not alone. All the best to you and your hubby!

 

[Danijela]

Hi Cherry,

It must have been devastating to have to deal first with cancer and than with your husband's current diagnosis. I too, am based in the UK, in Greater Manchester. Practice can vary between the States and the UK, in terms of the care and support available. It can also vary between different parts of the UK.

I agree with Thelma about the peg. If his FVC is still good he ought to get the peg as soon as possible. There have been experiences both on this forum and the UK one where a person's FVC has dropped below the point where insertion of peg under an anaesthetic was possible, so avoiding such situation should be the priority. Same with Bipap. The sooner the better.

Have you contacted MNDA (Motor Neuron Disease Association)? Does your husband go to a specialist MND clinic?

All the best, Dani

 

[rachelg]

Hello

Hi Cherry

I am so sorry for your husbands diagnosis. My husband Mark was diagnosed with PBP in May 2009. We live in Somerset.

First of all, like the others have said, the PEG is an essential. Mark had his fitted in June after losing quite a lot of weight. It was the best thing he ever had done. He has regained and stabalised his weight and takes all his meds through the tube.

As for the prognosis - like Thelma says - no two people are the same. We decided early on to take no notice of prognosis or statistics and we take each day as it comes.

We have a fantastic health team for Mark who try to keep one step ahead of any problems. I hope you have a good team.

Ask as many questions as you like, there are many wonderful and knowledgeable people on this forum.

Take care
RACHEL

 

[olly]

hi cherry.
i am so sorry for what you are going through and your husbands diagnosed.
everyone has given you really good advice,you can count on that here.
the neuro should not have told you that,giving you no hope.
with assistive devices,good care and love there is always hope. please remember that.

 

[Cherry]

Many thanks to you all for your advice and kinds words. Brian wasn't told his F.V.C. the neurologist just said it wasn't good. He does get very tired but keeps going and tries to keep positive. My son has M.E. and said he couldn't live without his father, which is very distressing for us both to hear.
We have two grandchildren living with us aged ten and eleven years old, who are used to their granddad being ill, so don't really know what is wrong. We do have great support here in Nottingham with the district nurse, doctors, hospital and the M.N.A., who send us leaflets etc and offer any help we might need. He has been given Riluzole, one tablet a day, and hasn't had any side affects yet. Eating is hard for him, but I doubt he will be able to get the PEG fitted any sooner than next month. I asked the district nurse today about N.I.V. but she didn't know much about it so we will probably ask at the hospital next week.

Thanks again to all for your replies and encouragement.
Love, Cherry.

 

[Danijela]

Hi Cherry,

If you go to this site: MND Association - Publications - People with MND and Carers

and then look for Information leaflet 14B entitled Ventilation in MND, you should be able to get a better idea of different options. The district nurse could have a look too. We have a specialist MND nurse attached to our MND center, so those conversations are easier to have.


Dani

 

[Cherry]

Thanks for that Dani. We are off to the hospital tomorrow, don't know what to expect though. Hubby is down and feels ill today so I feel down too.
Given what the neurologist told him it's no wonder. I bought the book Eric's winning, which I've just started to read and I hope it helps in some way.
Best wishes, Cherry.

 

[Cherry]

Went to the hospital today and was told, if anything, it'll be a RIG not a PEG Brian will have. Apparently they don't have Bipap for home use only at the hospitals. A ventilator could be possible at some point though.Feel so down and am waking up early and not able to eat for a while.
Does anyone know of anyone living for some years with P.B.P? As you can tell I'm desperate for something remotely positive.

Best wishes, Cherry.

 

[Danijela]

Hi, I am sorry to hear about the current situation, and angered to find out they can only provide Bipap for hospital use. There are other UK based PALS who have been fitted with Bipap for home use. Perhaps you can come over to Build UK and share your experience. I am sure people would have ideas about how to best tackle this situation, as it is UK specific. I do not know about the RIG versus PEG, but I am sure someone will respond to this.

There are many people with PBP who have been living with and managing the condition successfully for a number of years, some of whom can be found on this forum. Dani

 

[Cherry]

Hi Dani, it was explained that the RIG was better for hubby, sounds like the only difference is in the way it's fitted.
How is your partner?
Your last comment has made me feel a little happier and more optimistic, thanks.

Cherry. X

 

[BrianD]

This seems to be decent article that explains the difference between the PEG versus RIG method.

http://www.alsphiladelphia.org/NetCommunity/Document.Doc?id=828

 

[Cherry]

Thanks for that Brian.
Has anyone else been told they had P.B.P/ A.L.S. then to be told it was P.L.S.? I've read that P.L.S. can be confused with A.L.S. and it can take years to diagnose sometimes.
I also wonder if hubby has Polymyositis as he's had Raynaurds disease and Cancer, which I've read are connected. Any feedback would be appreciated.

Cherry.