New here - father-in-law diagnosed with MND

[Neffy]

Hello everyone,

I have just found this forum and I am so pleased I have!

My father-in-law was diagnosed with MND just over a year ago. It started with loss of muscle in his hands, and has steadily progressed to his facial muscles and breathing/swallowing. He has terrible coughing fits which scare me because he doesn't seem able to catch his breath. Also, he has been complaining about lack of sleep as he finds it very uncomfortable these days and experiences a lot of painful cramping in his legs. His walking/driving has not been seriously effected as yet, although of course he does get tired easily.

Unfortunately, he lives 4,000 miles away in Barbados (I am in the UK) so I cannot care for him in the way that I would want to but I do feel a compelling need to do anything I can from where I am. Whether this be simply carrying out online research & passing the info to other family members nearer to him, or getting out there and fundraising myself - I want to do it!

I feel very sad and frightened for my partner. It has already been so hard for him to see his father going through this, as I'm sure all of you understand and it is heartwrenching for me not to be able to wave a magic wand, you know?

I suppose I have joined this forum (i) to gain useful advice and keep up-to-speed with the latest developments and (ii) to not feel so alone in supporting my partner through this. And I hope that in return I can make new friends and can offer many of you support when needed.

In the meantime, from what I have said about my father-in-law, does anyone have any suggestions as to how to make him more comfortable at the moment? :-(

Thank you for your responses in advance.

Neffy

 

[olly]

hi neffy

welcome to the forum.
sorry to hear about your FIL,it must be so hard living so far away from him.
does he use a computer? he could come on the forum.
i have a friend in texas in a care home,i just try to email everyday to show support.
what you are doing now ,emailing and finding info for him will show him your support.
any chance of going to see him?
i know you will find plenty of friends and support here

 

[CindyM]

Hi Neffy and welcome to the forum. Sorry to hear about your FIL, though. I wonder if he need information about services in his area, what to expect, how to cope, and so forth. You could research those answers from afar and send him the information. Just a thought...Anyway, I wanted to welcome you. Cindy

 

[Al]

Hi Neffy, welcome. Can your father in law get a prescription for Baclofen or Quinine. Both help with leg cramps.

AL.

 

[katekath]

Hi Neffy,

My mum has a lot of phlegm and coughs a lot (She has a trach). The nurse at the hospital taught me this method to pat her on the back to help her cough.

Basically, you "cup" one hand, then pat the back with hand straight up (your fingers parallel to the spine) on each side of the back. My mum told me she feels better when I do that rather than the "regular" patting, so thought I would share. The hospital she is in right now is a Rehab Hospital, so I guess they should know more about physiotherapy and won't go too wrong there.

I know seeing those cough fits is scary. I often thought my mum is going to choke. Now whenever she starts coughing or when I see one coming (she always have this look before the fits starts), I will help her sit up and start patting her back to make her feel better.

PS: My sister, who is right handed told me it is more difficult for her to do that. I don't know 'cos I'm left handed. :wink:

Hope this helps.

Wan

 

[CindyM]

I forgot about this technique! We used to do it on my daughter when she had asthma as a small child. Thank you for bringing this up.

Do you know the proper name for this procedure? My daughter used to say "Mom, will you clap my back?" So we always called it "back-clapping", LOL.

 

[katekath]

Chest physiotherapy - Percussion

lol, Cindy. Back-clapping sounds so apt! I did a search and found out from a blog it is known as Percussion.

Here's a section from the blog:

Often postural drainage is combined with vibration, by someone else repeatedly clapping or firmly patting the person on the back using the cupped hand and forearm for 5-10 minutes. Correctly done this causes vibrations in the chest which are transferred to the airways and to the mucus in them. The “banging” or “chest clapping” is known as Percussion (like the percussion section of a band or orchestra). Chest shaking or vibration while placing hands on your chest might also be carried out while you breathe out.

Apparently, that is part of chest physiotherapy.

If anyone is interested in reading more, the URL is http://littleblogofphlegm.blogspot.com/

 

[CindyM]

Percussion! Now it all comes back. That was 25 years ago, and I am lucky at this point I can remember what I ate for my most recent meal. :roll:

People might want to visit your link and look into this technique. I bet it will help some PALS, at least.

 

[Al]

I knew it too but had forgotten. Back in the early 80's I did a lot of fund raising for Cystic Fibrosis while in a service club. We spent a day at the CF camp and saw first hand the treatments the kids took. A trip down memory lane.

AL.

 

[katekath]

I realised "chest physio" was written on the hosp white board beside my mum's name yest. Should have guessed that was part of it, but I was too slow! lol.