Help

[Bea6]

Hi everyone I’ve been on here a while but not really posted. Are use voice text as my hand is no longer type so please forgive any errors is increasingly frustrating as it doesn’t write exactly as I speak. I have a msa they think possibly I have had it for 5 1/2 years approximately as I was diagnosed with Parkinson‘s first. My question to everyone is does anyone else have periods when they feel so unwell week and unable to get out of bed severe pain all over full body tremor and just feel totally lost? I feel so alone with this dreadful illness I live alone which makes life difficult I’m trying to get a care package set up but finances are proving difficult to get this arranged. Looking forward to hear from you all best wishes Bea

[Battack75]

Hi I can’t really answer your question as it is my father that has MSA but I just wanted to say hi and that you send you a big hug! I’m sorry you are having to face this alone and I hope you can get the help and support you want and need ❤️ xxx

[Bea6 in reply to Battack75]

Thank you so much for your kindness b x

[ZoeSweet7]

Hi Bea,

I’m so sorry to hear this. I can’t even imagine, however, my Dad has this now too and I live with it through him.

He too had a Parkinson’s diagnosis, got his MSA diagnosis just over a week ago. He’s deteriorating at a fast rate.

I look at my Dad and he looks totally lost. He has stomach pains most of his days so laying down or sitting down let alone actually relaxing is far and few between. He is literally up and down like a yo-yo. He’s weakened to the point of using a wheel chair for distances now. He will very slowly stagger to a seat or to a door etc but that’s about all.

Even though you live alone, just remember YOU ARE NOT ALONE THROUGH THIS.

Zoe. X

[Bea6 in reply to ZoeSweet7]

Thank you so much for your reply Zoe. Your reply has really helped me so much to know that I am not alone and also about the tummy pains I have them badly every day and no one has ever told me that this is part of it. Sometimes you think you’re going mad when you have so many symptoms and no one seems to know how to help you my doctor just shakes his head then goes away again. I too use a wheelchair and can just about stick around my flat to go to the toilet et cetera it affects my bladder tummy terrible headaches and all over pain and generally I’m so weak I just have to lie down most of the day the fatigue is overwhelming. I can’t tell you what a comfort it is to have someone who understands what I am going through thank you Bea

[Bea6 in reply to ZoeSweet7]

I’m so sorry for you both your dad and you as the disease is awful to live with but I would imagine so painful to watch for you my thoughts go out to you both with much love Bea

[lbradburn1312]

Hi Bea6

I am so sorry you are having to battle this horrible illness.

I don't have MSA but I care for my mother who does and she has complained off feeling very sore at times. She has stomach cramps and general feeling a of nausea.

I see you live in the UK, I am based in Glasgow. Can your Consultant not assist in setting up your care package?

It must be difficult when living on your own but you should be receiving more support.

Sending you lots of love xx

[Bea6 in reply to lbradburn1312]

Good morning, yes it’s very difficult trying to set up a care package in my area I live in a small village which is very Rurel and social services are saying people don’t want to travel here because I don’t get paid for the travelling. We are advertising for PAs but so farno joy at present. Also funding is it issue as they want me to pay £500 monthly and as you are probably aware I don’t know anyone who on benefits has that to spare after bills.My consultant is difficult to access I only have one appointment per year.But I will keep fighting. The frustrating thing is I was a nurse and worked 35 years before I became ill and did not choose this illness but I guess times have changed greatly in that time. I have faith that eventually it will get sorted. Thank you so much for your kind reply Bea

[Derkie54 in reply to Bea6]

Hello Bea6,

Like you we used to live in a village and we saw the consultant once a year.

We also saw the Parkinsons (& MSA) nurse once a year but because of continence issues in the hospital a community nurse now comes to us instead.......surprised they won't do that for you once a year even if it is a bit remote where you live.

Hope you get sorted soon.

Derek

[Bea6 in reply to Derkie54]

Hello thank you For your kind reply. I have had a phone call with the MS a nurse and she’s going to contact the hospice and my GP so I’m very much hoping things will improve soon. I feel very slightly brighter today so I’m ever hopeful tomorrow will be better. for your kind reply. I have had a phone call with the MSA nurse and she’s going to contact the hospice and my GP so I’m very much hoping things will improve soon. I feel very slightly brighter today so I’m ever hopeful tomorrow will be better.

Bea

[Katyjonesuk]

Please contact the MSA trust - their advocacy officer has been amazingly helpful with getting funds to help my dad who has MSA for 5 years now

Hate to think of you alone facing this cruel disease - take all the help you can get, make a list of people who might be able to help you with all sorts of things.

[Paul_and_Sue_Wood]

Hi

We are always sorry to hear of a new sufferer of MSA and we wished it wasnt the case, but it is what it is.

My wife has been developing various stages of MSA since 2009 and we still battle on. She has skin pain as if she had been pushed into a scalding bath along with cramping and tremors. These we manage with various medications but its all adapting all the time.

Definitely get in touch with the team at MSA trust as they have a vast amount of experience in helping suffereres and care support around sufferers.

I experienced the problem with care support around where we live in Bromsgrove as I soon as we move 5 miles out from the edge of town, no carers were available so we made a decision to stay in the town area for my wifes benefit.

Also, talk to soial and specialist nursing teams as there are also assisted technology supports to keep you communicating.

Good luck and keep shouting HELP!

Paul & Sue Wood

[Bea6 in reply to Paul_and_Sue_Wood]

Thank you for your kind reply Bea

[ChocolatePot]

Bea you are not alone. What you describe I recognize from my hubby. Was diagnosed with Parkinons many years ago and now changed to MSA. Since last year he is wheelchair bound and we got rails in every single room in the house. Pain, esp tummy pains are a everyday occurence. Tough I say his have eased since we started on Symprove. But he still has days, where he just sits on his riser/recliner and only moves to go to the toilet. As for unable to get out of bed, maybe you also have sleep apnea and or depression? Hubby is on various meds for both. And he speaks less and less, so voice text or some machine maybe on the cards soon for him. <<<hugs>>>> to you

[Bea6]

Thank you for your kind reply it’s just nice knowing I’m not alone kindest regards Bea

[Hellebelle]

Hi Bea6,

Like a few other people, I do not know first hand what its like to have MSA as it's my dad who has the condition.

I just wanted to reach out a hand of friendship and understanding as it must be so tough for you dealing with this alone.

I really hope you get the help you deserve and need. I assume you have done all the necessary things such as contact social services for help? The MSA trust is also such a useful resource. The specialist nurses are very helpful.

Please keep us up to date with your progress.

[Bea6 in reply to Hellebelle]

Thank you so much I will keep you updated yes I’ve been in touch with social services and the care package is in the process of but we are having some snags due to my location because it’s so Rurel. I’ve also spoken to MS Anurse today and she’s going to be helping me so thank you so much everyone for all the help and advice much love Bea x

[Hellebelle]

My dad has the same problem as he lives in a rural area. It shouldn't be like that but I am afraid that is the reality. I really hope you get the care package you need.

[Bea6 in reply to Hellebelle]

Thank you I will keep trying and if necessary I will have to consider moving somewhere a bit more accessible hope your dad is coping well much love Bea

[Daleston10]

I’m very surprised that you have not got a care package yet the social service got one set up for us in no time and then the district nurse got continuing care set up I do hope they get something sorted out for you