Husband diagnosed on 16th January

[Wailywoo]

Hubby getting worse

Hello again,

There are a few things I wanted to ask.

Does anyone know of a place we could purchase a wheelchair for hubby? He is 6'2" and we are having difficulty finding one for his size. Ableworld say they don't have anything big enough for him. I have looked on the internet and it is like a minefield.

He had a fall on Sunday and hurt his knee and has been using 2 walking sticks instead of the usual one or none and has lost all confidence. He is due to go for a hospital appointment on Monday for a ventilator trial as a day case and will not be able to walk from the car to the appointment and we could do with getting a wheelchair asap.

His MND progress is alarming at the moment and he is finding it difficult to cope with the fact that he can't do things for himself like he used to. It is very frustrating for him and I find it so hard to watch.

All in all it is getting more and more difficult as time goes on and this is only 2 1/2 months after diagnosis.

Just wanted some contact really.....I know it isn't happening to me, but I feel a little alone in coping, as children a fair distance away and feel unable to ask them for help.

Wailywoo x

[Doug Carpenter]

Dear Wallywoo

Please accept an electronic hug.

You're doing brilliantly in a terrible situation. And you're not alone. Everyone here is only a mouse click away.

I just wanted to mention about wheelchairs. It may depend on the services available in your area, but you should be provided with one for free, possibly via your physiotherapist or OT. It's important that your husband is measured to ensure he has the correct size chair.

But just for the Monday appointment specifically, I would hope that the hospital would be able to provide a chair and a porter to give safe transfer from the car. I know it's another chore, but do ring them and explain your need.

I'm really sorry to hear about the fall!

Thinking of you both.

Doug

[Deb]

Hi Wailywoo,

I am so sorry for your situation. These early days are so hard for both of you, especially when you have not got the equipment you need to make life easier or safer. I understand how you feel about not wanting to worry your children but I hope you have some support too and that you are taking care of yourself.

If your husband has been diagnosed he should have an OT and physio who will do a wheelchair assessment to get the right one to suit his needs.I understand why you feel it is a minefield because there is so much choice and a wheelchair should suit both your needs. Our OT came round the house within days to talk to my hubby and I about what adaptions we would need. I found walking with sticks unsafe because they wobbled so I used a rollator in the house and a wheelchair or scooter out. A fall really dents our confidence both physically and psychologically (not to mention being painful !) so it is really important to minimise the risk and I hope you have outside help.

If you haven't a wheelchair before your husband's appointment the hospital should provide one and if you let them know they should send a porter to help. I'm not sure if you have a blue badge but before we had my husband used to drop me off and leave me in the entrance in my wheelchair. He did return !

I am thinking of you both . These early days are so alarming but hopefully things will settle down when you get the help you really need.

Love Debbie x

[Ellie]

Oh Woo, I'm sorry you've both been left to your own devices - having good support and the right equipment at the right time is vital with MND.

Has hubby any support from MND Nurse, OT, Physio, Clinic?

If he hasn't been referred to / put in contact with his local hospice, you should ask his GP about it. They are fantastic places and their OT and/or Physiotherapist are great for hurrying up equipment needs and requests. They may loan your husband a wheelchair too.

The Red Cross also loan out manual wheelchairs - in general the frames and footrests are height adjustable to cater for people of different heights, usually an OT will do this to get the correct seating position but I'm sure it can be done at home with a spanner and allen keys...

Anyway, you should NOT have to buy one

Hope the ventilation / BiPAP trial goes well.

Big hug and hope your hubby gets proper support ASAP.

Love Ellie.

[Kayleigh]

Hello Wailywoo,

I'm sorry to hear that your husband has had a fall. It must have been a nasty shock for both of you. I hope that he is feeling a bit better now.

May I suggest that you phone the MND Connect helpline. The MNDA are able to advise us about obtaining equipment, such as suitable wheelchairs, and they also have a 'wheelchair support service' - for further details, please click on the link below:-

https://www.mndassociation.org/getting-support/wheelchair-service/

Also, in case you are interested in contactIng the Red Cross about their wheelchair hire/loan service, here is a link to their website:-

https://www.redcross.org.uk/get-help/borrow-a-wheelchair

Coping with the impact of MND can feel very lonely and isolating, especially if we don't have much support from family or friends living close by. Please feel welcome to ask for advice and support on this forum, as often as you like.

There is also a lot of local support available for us eg from Regional Care Development Advisers and at MNDA branch/group meetings. I have provided a link to the MNDAs 'local support' webpage below:-

https://www.mndassociation.org/getting-support/local-support/

I hope you and your husband get more support very soon. Please don't hesitate to contact MND Connect and/or your Regional Care Development Adviser, if you would like to (the Advisers are very friendly and knowledgable about what local support/help is available to us, and they are available to offer us ongoing support and advice).

Love and best wishes,
Kayleigh x

[Lynne K]

Hi Wailywoo, I see that you've already had good advice so I won't add to that. But I wanted to send you an electronic hug and love. Take care, Lynne x

[Wailywoo]

Hello,

Thank you to everyone who answered my last post. I have had a bit of a meltdown over the last week or so, so sorry I haven't been back to thank everyone for their kind replies. Some useful information there. We arrived at the hospital early on Monday so that we could use one of the wheelchairs provided by them that were in the entrance, so that turned out ok, but not sure we would have been able to use one if we had arrived much later.

We have managed to be referred for a wheelchair and waiting on a contact about that. We really could do with some sort of neck support though as hubby's head is apt to drop quite a lot when walking about and is causing pain at the back of his neck and shoulders. We heard of the Head Up collar, but it is not available in our area on the NHS, but may contact the company that makes them direct in order to get him some relief. He has tried pain killers, but they don't seem to work. We seem to have a lot of help with home aids, which are useful, but not so much with the personal stuff that could make his life more comfortable.

Well, thank you all for your kindness. I feel quite guilty asking for help as you all seem to be going through it yourselves and I am a bit of an outsider, although it has been very useful for both me and hubby reading your replies.

My warmest wishes to you all,

Wailywoo x

[Ellie]

Hi Wailywoo,

Sorry you had a meltdown, totally understandable to us on the Forum!

It's just awful to hear that a head support collar designed specifically for people with MND and which is "available on the NHS" is not available to your husband

Was he offered an alternative collar in the meantime? There are good alternative cervical neck collars.

I wonder if it's worth ringing the MND Connect helpline or hubby's MND Clinic might be able to get one for him? Is he linked into a hospice?

I know how painful a weak neck can be and really empathise with what your hubby is going through He should be able to get a collar this week.

There are quite a few types - the Hereford Collar, Miami Cervical Collar, the Headmaster, to name just a few - but his OT should assess his individual needs and provide a suitable collar.

For the pain, try a warm heat pack and a gentle massage (with magnesium oil is even better) and/or Voltarol cream or similar. If his muscles are in spasm, he may benefit from antispasmodics or diazepam (GP can advise)

Hope he gets a collar ASAP!!

Love Ellie.

[Deb]

Hi Wailwoo,

So sorry you are not getting the help, support and equipment that you need to make your husband comfortable. It must be so frustrating and it's not surprising you have had a meltdown this week. This is such a hard stage for you both, with such alot to cope with.

Please dont ever feel guilty for asking for help on this forum because that's what it is here for. It's a unique place for practical advice from people who really understand and emotional support too for carers and people with MND. You are definitely not an "outsider" but a valued forum member.

Sending you virtual hugs
Love Debbie x

[Wailywoo]

Hi again,

Thank you so much for your support and kind words.

No we haven’t had an offer of any other collar. The speech and language therapist came today and said that they now have to go through the GP to get the collar and have written to him, so not holding out much hope there as he wasn’t interested once hubby was diagnosed by another neurologist doctor. He was very anti when asked for a DS1500 form and that took more than 4 weeks for him to do.

One question....I notice the mention of being in contact with the hospice a couple of times now on this forum and wondered what that entailed. We haven’t had any suggestions about that from anyone.

The idea of a warm heat pack for the pain was a good one and not something we had thought of. We had some ibuprofen gel prescribed, but that didn’t help, but helped for the knee when hubby fell, so not a waste of a prescription ;-)

Thank you all once again.

Warmest wishes,
Wailywoo x

[Ellie]

Hospices are fabulous places Wailywoo, strange as that may sound!

Nearly all offer a Day Hospice which your husband can attend one day per week, often for a specified number of weeks, but he remains "linked " with the hospice. Many offer outreach nursing and some offer respite stays. He'll have access to nursing, physiotherapy, occupational therapy (OT), counselling, complementary therapy and a social worker.

You can also access counselling and sometimes complementary therapy too.

They often help with the form filling too.

Often a GP refers but given hubby's seems so disinterested you can ring your local hospice and see if you can self-refer. (If you don't know your hospice, have a look at https://www.hospiceuk.org/?gclid=Cjw...hoCaQ0QAvD_BwE )

Or maybe your community nurse could help?

Love Ellie.

[Ellie]

Me again, sorry!

I found this on collars/head supports https://www.mndassociation.org/wp-co...ne-disease.pdf

The HeadUp collar is the Sheffield Snood on the sheet.

If you want to buy an interim, inexpensive collar while waiting for the GP to order one / hospice OT / next MND Clinic appt, it should be a fairly rigid cervical collar rather than a soft foam one.

Love Ellie.

[Terry]

Hi Wailywoo;

Hopefully your husband is up for trying a hospice out. They are normally used to Mnd and as Ellie says, are great places to get help to live life better.

You should be able to self refer, so give them a ring. If you can get others like his specialist team or his doctor to do so as well, great.

Love Terry

[Wailywoo]

Hospice referral

Thank you so much for your replies. I see it was 11th April when the last reply was posted and 9th May was the first time our SLT mentioned the hospice and complementary therapies, which I should be able to access too, and said she would refer hubby and myself. She also mentioned the local Cheshire MND, who have a meeting once a month, so we will be looking into going there too. Unfortunately found out too late that the next meeting is today...but June beckons.

I am afraid I only tend to go on here when I have either a meltdown or partial-meltdown, like today. However, I am very grateful to anyone who has posted a reply and hope that one day I can give back with things we have experienced. Feeling like a taker....

We also had an appointment at the hospital on 30th April for the Head Up collar, which has been ordered, but not sure how long this will take - not arrived yet. Hubby's chin is permanently on his chest when standing and this makes it very difficult to swallow any collection of saliva in his mouth. Makes it embarrassing for him if he starts to speak and has a mouthful as it goes down his front. He is making a conscious effort to pull his head up with great effort in order to swallow from time to time. He seems ok when sitting, like his back straightens out and his head comes up enough to swallow.

I don't know if anyone has had problems with Riluzole not being available? Hubby decided to start it only to find out that it was not available at the moment. What use is starting if there is an interruption in supply? Anyway, we are waiting for the MND nurse at the end of this week to see if she has any then.

Just thought I would put an update on here.....

Many thanks again,

Wailywoo

[Ellie]

Hi Wailywoo.

Don't worry about your occasional Forum use - we all know how consuming caring for a family member with MND is...

Does your husband take any meds to reduce his saliva production? There are a few different meds so if the first one doesn't suit, others are available.

Do you know if someone will fit the HeadUp collar for him? It really ought to be done by a Physio or an OT as it's important the supports are placed correctly to give effective support - that's the beauty of the HeadUp collar, the supports go where one needs it.

Yes, there were supply issues for Riluzole (there are threads on it) but it should be more available now?
See http://forum.mndassociation.org/show...?9066-Riluzole


Hope you get a nice massage at the hospice!

Love Ellie.