multiple system atrophy

[Aprilfool20]

i Have been diagnosed with MSA and although marrired my husband gives little suppor i also cannot speak and it takes so long to anything.what to do?

[LuisRodicioRodicio]

Hi Aprilfool20!

Especially in neurological diseases, neither the patient nor their caregivers should make the journey alone.

Without significant help it is very difficult to carry out this kind of diseases without suffering a severe wear-down.

As Bill F said: “As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends/neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help.”

As an immediate measure:

If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P, MSA, etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. This kind of diseases usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.

One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.

This link could help:

parkinsonslifestylemanageme...

Hug, luck and courage.

Luis

[easterncedar]

Dear April, I’m really sorry to think of you going through this without proper support, particularly with the isolation that deficits in communication cause.

If you can solicit the involvement of social services, perhaps through your GP, I would urge you to do so. I’m in the US, so not familiar with who you might contact, but it sounds like you need help now and will need more.

Are you able to advocate for yourself?

Please stay in touch.

Ec

[SimonandMaria]

If there is one thing I have learnt through the PSP journey is that asking for help is fundamental. I realised that we have an inbuilt difficulty to ask for help, afraid of disturbing, afraid of being answered with a "no", or just simply our ego, but once we get over that initial difficulty, you find out you have many more friends than you thought you had. You find new friends and you find that many people are more than pleased to help. One also needs to accept that it might be too difficult for family and relatives. We are not all the same, we don't all have the ability to cope with a family member having a desease. Hence writing to social services, to doctors, to friends, to associations to anyone that comes to mind.

Meanwhyle I will be praying for you

Simon

[messier]

there is a separate forum on here for MSA healthunlocked.com/msa-trust. Although there are lots of similarities the other forum may be good for you.