A retirement we couldn’t have imagined.

SJ started losing his balance and having difficulty walking early 2019. After a few blood tests with no answers GP told him ‘well you are in your sixties now, you have to expect these things’. We did not accept this and insisted on further exploration. The GP then referred him for a neurology appointment. Initially SJ was diagnosed with PD in July 2019. By early 2020 we realised it was not PD, but by then the pandemic had everywhere locked down. Eventually MSA diagnosis in April 2021.

I don’t need to explain to you all how stressful life has been since 2019.

I personally have always considered the best way to deal with any issue is to gather as much information as possible to prepare for what is to come. If we knew then what we know now and had any idea of what SJ would go through I cannot imagine how we would have survived.

There needs to be far more training for medical professionals in the signs for neurological diseases so that by the time the patient gets their appointment with a neurological specialist, everyone agrees it is very likely a neurological issue, just got to figure out which one. We had at times wondered if it was a brain tumour or cancer and there have been times when we might have wished it was.

Research is also needed on how to cascade information to patients and carers. This is such a huge life changing disease which we had never heard of and had no idea how much physical and emotional support would be needed.

We take each day as it comes and make a point of reminding ourselves of the great people there are who some how come into our lives just when we need them. We have lived a life so far, that we are proud of, though not perfect by any means, but we don’t have many ‘I wish we had done’ conversations.

Sorry seem to have rambled on.

Very best wishes to you all, both patients and carers.

JenWren1980

[Derkie54]

Hello,

So sorry to hear about SJ.

If you're after information have a look at the MSA Trust, the support is excellent.

My wife ( like many others ) had a journey with a diagnosis of MS, then PD and the MSA.

This disease can be quite different for each sufferer. In my wife's case it has been a slow deterioration over many years.

We do struggle now but do our best to adjust to our new normal when changes do come, do try and enjoy each day. I'm by no means perfect but I try to support her as best as I can.

It's a friendly forum so if you have any specific questions then just ask and someone will respond, but remember we are not medically trained so it's just our opinions and experiences. For expert advice contact the MSA Trust.

Take care.

Derek

[woollyheaded in reply to Derkie54]

Interesting to read about your wife- I was diagnosed with MS myself 33 yrs ago , and thankfully despite it being horrible, it was a slow progression and I was still walking with a rollator until my MS Nurse flagged up to the Team that my legs were still strong but my gait had changed - this was in 2020. I struggled on during the pandemic until my (MS) Neurologist agreed and sent me for a DAT scan which proved consistent with Parkinsons. I was referred to a Movement Disorder Specialist in my Parkinson's Clinic who diagnosed me with MSA - that was 2 years ago. By Sept 2022 , I was shocked how quickly I'd progressed , I rely on my husband to do everything for me by now .

[Derkie54 in reply to woollyheaded]

Yes, my wife was diagnosed with MS about 30 years ago like yourself and like yourself relies on me to do everything.

Take care.

Derek

[SophieCat55 in reply to woollyheaded]

You take care and just enjoy each day so pleased you have your loving husband to take care of you God bless you both

[woollyheaded in reply to SophieCat55]

Thank youp🙏

[mandg]

Not a ramble at all, very well put. So easy to say it's an age thing. Good luck to you both. PS As I write this, my morning has not started as planned...😖

[5456partner]

Hi JenWren,

So sorry to hear about SJ and this awful journey you are both on. My husband was diagnosed with MSA last December and I do relate to many things you say in your post. Thankfully he wasn't first diagnosed with PD, but he did have , probably unnecessary treatment and operations for his bladder condition, none of which helped, in fact it made it much worse. He now has a supra pubic catheter, which has its own problems! Like you, this was not the retirement we had envisaged!! But we are really grateful for the good things we do have, a very sympathetic GP, great nurses, speech Therapist and a fantastic specialist who was pretty quick to run the tests needed to reach this awful diagnosis. Not to mention really supportive friends, family and neighbours, and great help from the MSA trust. My husband can no longer walk unaided, and we're trying hard to cope with this. At least the medication he is on now seems to keep his blood pressure under control, so we haven't had any awful fainting spells for a few months now. So much to come to terms with and I wish you and SJ all the best. Sorry, I've used this reply to ramble on now!

[covidnoel in reply to 5456partner]

What did he take for B.P.? Noel's is still running between 770 and 220.

[5456partner in reply to covidnoel]

He takes 3 x 100 microgram fludrocortisone tablets before getting up in the morning along with 7.5mg tablets of midodrine. He then takes another 7.5mg of midodrine at 13.00 and again at 18.00. The Dr and specialist have had to juggle the midodrine to get the dosage right for him. At one point he was taking 10mg 3 x a day, but he had the side effect of terrible tingling in his legs and torso. So it was reduced to 5mg 3 x a day, but then he started passing out again for long periods (15mins, very frightening). So it was adjusted more slowly over several weeks to arrive at this current amount and it seems to be a good amount to control his big BP dips. Hope this is helpful.

[covidnoel in reply to 5456partner]

Thank you so much. Hope the doc will go along with something new, cuz currently he's still on a roller coaster.. Will keep you posted.

[5456partner in reply to covidnoel]

All the best with that, it's really made such a difference having BP more under control.

[maxandpoppy]

What wise comments. My husband has followed a similar pathway. If MSA had been diagnosed earlier ......but the level of ignorance is so difficult to deal with when you the layman know more than the professional. The MSA Trust factsheets and booklets are a great help. Did you know they have a special GP info pack?

[esj20]

Sorry to here about your journey.

my diagnosis was relatively quick, 12 months. although after undergoing clinical trails it appears my symptoms started way back in 2017 which makes me think how slow / fast the progression will be!

Always here each other on this forum,

Take care and safe journey