Hospital appointments

[Mary C]

Do others dread going for check ups for associated MND issues ie respiratory clinic .?I get torn between wanting to know the full facts and not wanting to know too much.

So 18 months post diagnosis I had one of my regular check ups today with respiratory team at the hospital I am supported by.I had my questions ready about various symptoms ie dry mouth, throat gurgles, mucus collecting in mouth and throat , morning gagging and wretching to name a few.

The lovely clinical scientist who saw me ( probably seen me three times so far) was up to date with my MND issues as attends the multi disciplinary team meetings once a month when the team discuss the current situation of local MND patients.

She let me go through my concerns addressing each issue and addressing my husband’s and daughter’s questions too.She didn’t appear rushed in any way.
We discussed side effects of certain medications and she promised to talk to the lead consultant and get back to me.
After I got back home she rang to make suggestion for dose reductions etc.

I felt anxious this morning but I went home feeling listened to and much more relaxed.
So the MND won’t go away but this team have consistently been supportive and seem to get my need to remain at home if at all possible.No judgements made that I don’t get on with the NIV either.

Just thought I would share a positive experience.
Best wishes
Mary

[Ellie]

Thanks for the update Mary. I was thinking of you today, knowing you had your respiratory appointment...

Good to hear you had your concerns and questions addressed. xx

[Deb]

Its great you had a positive experience Mary C and feel listened to.

I always feel really anxious before I go to clinic even though everyone there is positive and supportive. My husband says there's no need to worry as we've already had the worst news but I suppose we feel vulnerable to any comment.

Hope you have a lovely, relaxing evening,
Love Debbie x😘🤗

[LindaB]

Mary C thanks for sharing your experience and it sounds so positive. So good to know you have such a supportive team. I admire you for making decisions right for you...I think that's what we all need to do if we can. It's right that we are not judged for our decisions. 🤗😘

[Lynne K]

Glad that you had such a positive experience with your appointment yesterday Mary. It’s good to be listened to and to have your questions answered. Thanks for sharing, xc

[shelly21]

Yes a big yes Mary re appointment anxiety. Especially lung function. Glad you had a good experience x

[Madge]

Mary I am glad you had a good experience. I haven’t seen my consultant or respiratory team for 2 years as they are in London and I live a 2 hour drive away. It has been agreed that my notes from the respiratory team have been transferred to my local hospital but I am due to see the MND consultant next week. I am dreading it as I will need to get a taxi that can take my electric wheelchair and make sure I have my padded underwear on and hope someone can help me to the loo when I arrive. I really am not looking forward to it.

[Mary C]

Hi Madge,
what a predicament you are in.

I don’t know how you haven’t been to see a consultant or respiratory team for 2 years.( I am booked for next respiratory appointment in 3 months and neurologist 6 monthly with their advise to contact them if I need to discuss anything sooner.Plus fortnightly calls from the local hospice and an MND association volunteer visited every few months.( hope somebody does if needed).

Is there anybody who can go with you, family or friend wise?If you had a bit more time you might have wanted to get a volunteer to accompany you or a carer from an agency.Not sure who else can help you in the toilet in a hospital setting of a clinic.

Presumably you have a whole lot of questions for the MND consultant next week.
let’s hope you get linked to a local hospice or palliative care team on a regular arrangement,
I don’t know you Madge but hope you manage the stressful journey and help to the loo.

I would suggest you write a list of questions to discuss with the consultant as presumably there have been a lot of changes in 2 years.I would be asking for a clearly defined support plan including who he / she intends referring you to and within what time scale.

Obviously I don’t know your journey Madge but really hope you come away from MND consultant knowing who will be offering you ongoing support.For myself , my confidence comes from the support I receive from the hospice and palliative care team and I have my little red book of the contact details for district nurses, dietician, speech therapist etc.

It would good to hear the outcome especially in terms of future support for you.
Best wishes Madge…you don’t need this additional stress.
Mary x

[DeeH]

Madge

Sorry you are going through this.

Hubs first appointment was 2 hours away, we got patient transport and I could go with him.

The consultant does clinics every few months in a nearer hospital. Will still get patient transport as hubs is more comfortable in a reclined stretcher.
The roads are shocking around here and his head was bouncing around in the wheechair (first trip)

Can you contact your local MND association for advice?

We also get help from hospice at home, OT, district nurse and the GP.

When we moved house, we had to transfer hubs in the folding wheelchair in a mini bus, with a ramp.

If you are at an appointment at a hospital, I would phone and ask if there is patient liason or something, regarding your toileting concerns.

Good luck

Donna



Carer for husband diagnosed in July 2020 with MND