Any support greatly appreciated!

[Whitefeather1]

Hi, I'm new to this forum. My best friend has MSA-P. head drop syndrome and nocturnal stridor, Maggie just turned 70. She was diagnosed Aug 22 but we think had symptoms for 5 years. First diagnosed with Parkinson's then A-Typical Parkinism.

At the moment she's in constant pain with her neck and head, she's had Botox injections but they don't seem to be helping. Maggie's backside feels numb and she seems to be losing control of her bowel movements and bladder, going between constipation and very loose. Quite often not making to the bathroom, she has to use a frame and her movements are very slow. Mag has carers twice daily which we're trying to increase but finding it difficult to get hold of her social worker. Her swallowing isn't great and she's lost 3st in weight. I'm doing all I can to support her but feel guilty I'm not doing enough. She's been so poorly this last month and isn't due to see her consultant until the end of March. We've left two messages but had no response as yet. Maggie wears a CPAP when sleeping which helps but sometimes feels so ill she can't put it on. She feels she has no life and is just existing.

I just don't know what I can do to help, I actually feel so helpless.

Can anyone guide me as to where we're at with this cruel disease?

[Paul_and_Sue_Wood]

Hi

Glad and sorry you've found us at the same time.

We all have our own stories to tell about the cruel condition and all the symptoms you describe are typical.

First port of call is the MSA Trust where they have huge amount of information and help. Go thr web site msatrust.org.uk.

They have nurses and information who can help.

Try the local hospice as they help in many ways.

Keep pushing the GP as they can influence.

Push the social worker and say you think your friend is in a life threatening position.

I hope the family are involved also.

If you need more ask on here..

Paul & Sue

[TK-67]

I would echo contacting your local hospice for support and the MSA Trust. You should be able to raise a safeguarding issue with the social worker as there are so many risks in the current situation. Sadly social care is under so much pressure at the moment and it does appear you have to shout a lot to get anything done. The GP should be looking at the pain issues however the hospice may be able to co-ordinate with them. You may have to start with a referral from the GP but from my experience hospices are amazing at getting things done and it’s all about quality of life.

[Diane831]

Maggie is fortunate to have you as a friend, trying to do all you can to understand and support her.

As Paul said, the MSA Trust is a great place to get information and support. Lots of insightful information sheets to read on the website but also the amazing Nurses who have so much experience and knowledge and understanding.

msatrust.org.uk/

I am sure that in what you have read already you will have discovered that there are many symptoms associated with this ridiculous condition and therefore everyone’s experience is a little different. The bathroom issues and the slowness of movement are very typical and the local bladder and bowel team might have suggestions, they have different names in different areas and can usually be accessed by referral from GP or any other health professionals who are involved.

I hope that you are able to get the support that you and your friend need in order to navigate this difficult time. If there is an MSA Trust Support group meeting in your area then that would be a good place to go. Or join in one of the virtual support groups on Zoom. Seeing others and hearing their stories helps you know that you are not alone in this.

Diane

[Whitefeather1]

Thank you all so much for your advice. I've already filled out the form for MSA trust and Maggie has been in contact with them. I'm going to call our local hospice shortly. I've left messages for her social worker to contact me but still waiting..

Maggie is trying to reach her GP for a home visit so we'll have to see how that goes. It just feels like she's been left to battle with this disease, I'm so sad for her. She's been in my life for as long as I can remember. Maggie does have three sons, one has special needs and the other two don't speak to her, they're aware of her diagnosis.

Personally, I'm struggling watching her decline. I recently lost my dad and a friend to cancer and now my sister has also been diagnosed with cancer. Hard times! But I'm determined to do all I can to support and help my dearest friend.

I've worked as a palliative carer in the past and seen some nasty diseases but this is something else!

Thank you all again for your support.

[ReverendBadger in reply to Whitefeather1]

MSA is indeed "something else". There is usually no joined up care and symptom treatment for this disease probably owing to its rarity and the variability of symptoms. Considered by some professionals to be the second worse neurological condition owing to the heavy symptom burden and progressively debilitating nature going on for years.

I was diagnosed in May 2022 and now have at least 15 different symptoms to manage. Even with the help of MSA trust, local Hospice and a few outstandingly helpful NHS bods it has felt like a full time job.

For me dealing with each symptom as an issue in itself has worked. maybe you and Maggie could prioritise the 3 most important issues, confirm with MSA trust nurse that this is ok medically and put your effort there to start with.

NB The 3st weight loss is something the GP should investigate asap. May or may not be solely due to MSA and swallowing, could be something else going on. Needs attention whatever the reason. (been there,done that !)

Regards,

Ken

[Whitefeather1 in reply to ReverendBadger]

Thank you, I've been sharing everyone's comments with Maggie and you've all been extremely helpful. We've got the ball rolling with a hospice referral. Fingers crossed it's a step in the right direction 🤞

[TK-67 in reply to Whitefeather1]

you are being an amazing friend. The hospice will also be able to support you, just ask. It’s hard and I found having that for me was just as important as what they did for mum. Can I ask too if there are lasting powers of attorney in place. If family aren’t there for your friend, you could be?

[Whitefeather1 in reply to TK-67]

Thank you, we've applied for me to be her power of attorney, just waiting for receipt of confirmation from them. I used to work for St. Christopher's hospice and spoke with them today. We're in the process now of Maggie being referred and I must admit I feel a huge sense of relief!

[TK-67 in reply to Whitefeather1]

I’m so relieved for both of you. MSA is such a rare condition it’s often knowing where to start. Ours was the hospice and the Trust. Sadly mum passed away in November but I’m staying around to help where I can here. Please message me if you need anything.