Plasma alpha-synuclein PD subtypes, PIGD

[aspergerian13]

The relation between plasma α-synuclein level and clinical symptoms or signs of Parkinson's disease.

ncbi.nlm.nih.gov/pubmed/293...

[Bridielena]

It’s becoming too hard to think of anything but what concerns me only. Like now at 4.30am. Just got out of my bed to bedside chair where I’ll wait fior meds to kick in . Need a toilet break after being in bed since 8.30 previous evening. An absolute record for me . Wonder what lies ahead.....today I mean. I also get pain and numbness in one hand which I think is Carpal Tunnel. It hurts but disipates after I have freed it frim under my torso where it lies most of the night. Yesterday was horrible put down to lack if sleep previous night, As I write I would love someone to appear into my personal space with a face washer. I could then see what I was typing. Little things mean a lot.

[Eliza-Jane in reply to Bridielena]

Hi Bridielena. I have just seen your message. You seem so low. I guess you live alone. I know it's hard, some days more than most. Try and be thankful for what you have got. Exercise what you have got. 2 tired legs are better than having no legs. Have you got something to show for your years on earth? Friends, kids, people you have helped? It seems PD makes it hard for initial movement . Trying to squeeze open the clothes leg is hard, but once the movement has started it is easier. I know living with PD is hard, but I have young friends who have really been shortchanged on life. I count my blessings. If it is all too hard, let someone near you know. They may be more than happy to help. I hope things improve for you. Take care.

[Bridielena in reply to Eliza-Jane]

Hello Eliza Jane

I don’t know what to say or think at present. An evacuation alarm has just gone off and I am uptight. My husband manages a 40 apartment Resort and we live in managers apartment. I can’t move.......it’s storming outside....and he is angry because I woke him. The alarm is elsewhere thank goodness but it has happened to us in the past. I have taken my meds so only have to wait for ‘kick in’.

I’ll be prepared if our alarm is triggered. Yes I’m tired and sore as had oral surgery 48 hours ago under general anaesthetic. My husband has little sympathy. One tough ex Vietnam returnee. Now our buzzer is going off. It’s 3.00am. I still can’t attend and he refuses to hear.

Managed to get to office only to find one drunken lost fellow looking for his accommodation. He had a mobile phone so told him to phone a taxi to get to his holiday home. We live in a coastal holiday destination. Very busy and exciting usually but not when it’s storming and evacuation alarms piecing the blackness.

Family live 1200 kilometres away.

Had this thing since 2005 and it’s really taking over me.....am on a Trial of Byetta which I think is showing some benefit in that I’m getting longer ‘on’ times...during daylight hours anyway. I don’t stop ‘doing ‘ then.....never idle when I don’t have to be.

Thank you for your thoughts and giving me the opportunity of re evaluating my life.

[Eliza-Jane in reply to Bridielena]

I hope you got through the storm alright. I can understand what you say about the ex Vietnam Vet and the lack of sympathy. I don't have that problem at all thankfully. I'm on the coast in Oz too, at least we can look at the ocean - that means a lot to me. Are you both employed as Managers or just hubby. If it's only him, maybe let him take the responsibility alone. Not always easy, but it can be learned. Sit back and think "not my job". Or as my wise daughter said the other day "Not my monkeys - not my circus."

[Bridielena in reply to Eliza-Jane]

It’s still storming.......it is supposed to enthrall us for another week or so. Husband is manager but he wants me to have more input. I don’t think I can as much as I want to , it’s impossible. I interact well with people so it would be easy if only I didn’t have PD.

Are you dizzy? I seem to be wobbly all the time. BP is low so put it down to that. See my GP next week. Also see a Dietitian next week. My appetite is lousy. 48 kgs and losing.

I meet up with others in the area with PD and find there are more and more people coming ‘out ‘.

Am trialing Exenatide in a once a week Injection. A nurse comes every Friday and administers. I think something positive is happening as I do have longer ‘on’ times. I’m into my 4th month. It’s not on the NHS list, at least not for PD, it’s a Diabetic drug, so I have to pay full price. Not unmanageable at $130 month. Have high hopes. Also started on Bcomplex daily. I think it’s helping too as I have had little Dystonia in my feet since beginning it about 2 weeks ago. It always arrived first thing in the morning.

Where do you live? I’m in North Qld where Cyclone Debbie wreaked havoc 12 months ago on 27 March 2017. All this rain now is bringing the reality of that day back again. It’s been a long tough road back but we got there.

Tonight I’ll be medicated again so as to keep me ready for any eventuality. Husband will be in his deep sleep.

Ta for listening.

HGE

[Eliza-Jane in reply to Bridielena]

Hi again.

My name is Jan and I live at Stanwell Park. South of Sydney and north of Wollongong.

I went down to 50kg and would have continued losing weight, but I got off my medication. I was taking Azilect at 5mg once per day and Stalevo 250mg 4 times a day. Losing my hair and weight. Felt tired and lazy. Once I woke each morning my right arm would twist backwards a few times and my hand would form a fist. I read Dystonia is brought on by meds. That was the last straw. I told my Neurologist I wanted to get off medication.

When I was initially diagnosed I was suffering from anxiety from two sources but health was OK. Energy OK. Medication did me no real favours.

I got off all medication and went back to my Neurologist. I was happy. A bit of a tremor and slow movement predominantly in my right arm. Sometimes right leg is slow. Life was good again. My 2 anxiety issues were cut right back to about 20% which helped immensely. One was a horrible neighbour and the other is the house I live in.

My Dr couldn't believe I was so good and asked what I wanted. I said I wanted a little bit of something. I am now on Madopar 50mg 3 times a day. My hair has stopped falling out. I am busy each day again although it takes a little longer to do everything. My weight is back up to 58kg and I don't want to get to 60kg so I have to watch it. I'm about 5'7" and eat whatever I want.

Why Exenatide if it is for diabetes? There was a trial last year for a drug for Diabetes which stopped the progress of PD in 100% of cases. It's not available in Australia but I will be following it up.

I was on blood pressure tablets for the last 20 years. Stalevo dropped it down and I started blacking out and dizzy. Stopped the blood pressure tablets and things normalised. I haven't had medication for blood pressure since last August and it is still normal.

Good luck with your weather. I hope you get calm weather soon. I enjoy our chats. Thank you.

Jan

[Bridielena in reply to Eliza-Jane]

Jan I started a reply but was interrupted and now I have no idea where it’s gone. I still get a little confused as to where I am supposed to reply. I’ve been on Madopar since 2005. Now I have severe Dyskenesia as a side effect. I’ve cut back from 8 X 125 daily to 3/4 . Why....surely it must be the Exenatide. It’s trialling in the States for PD with good outcomes. In Aus. it’s for Diabetes but my Neurologist was all for me giving it a go. Have to buy it but at $130 per month it’s doable. I’m into 4th month. Hope to stay on it for 12 months or whatever it takes. Also 2 weeks ago began daily mega B complex. Little Dystonia since then. It’s scary and hits just after getting out of bed. Had it 3 times used to be daily.

Since the general Anaesthetic last Thursday I’ve not been travelling as good as it had become but I know in a week or so it will come together. Dropping all that Madopar is a blessing but the Dyskenesia hasn’t lessened because of it.....drat!!

I am getting assistance with shopping and cleaning as I have been forbidden to drive. Understandable for the present.

Depression has been my companion for years but now I can talk my way out of it usually by playing my kind of music. I can bop along too by holding onto chair or bench.

Low blood pressure is worrying in that I could fall as body seems to be floating. I have had lots with cracked ribs and sternum being the worst. A full knee replacement 2 years ago didn’t help and was very hard but only a month or so ago it came good which has made life a lot easier.

Other PD friends here I catch up with weekly. We are all different. I don’t get hallucinations which one does and she’s in a mess. Her husband looks after that as it’s always at night.

Tomorrow I’m to see my GP so should have further to talk about next time I write. The jerking tires me out and I seem to back space more times than going forward.

It’s still pouring but I’m not complaining.

HGE

[Eliza-Jane in reply to Bridielena]

Hope your visit to the GP is of some help. I'm not meeting with a PD group, but walk with a group of friends 4 times a week from 6-20 in numbers, they know about my condition and are amazed I'm going so well. It worries me to hear you have Dyskinesia from Madopar. I am using the Vielight Gamma to try and stimulate my brain. It certainly helps me sleep.

Good luck tomorrow. Chat soon. My email is [e-mail] if that helps.

Jan

[Bridielena in reply to Eliza-Jane]

Jan I used to walk kilometres too. My PD journey took a Great Leap Forward about 2 years ago after knee replacement. Impossible now. The Dyskenesia is awful and now Dystonia in both feet as I pen this note. My husband has helped me back from toilet. I won’t go back to bed but will sit in my bedroom chair until 4 when I will start Madopar. Play solitaire or do a jigsaw until then. Am hoping to change bed to a split adjustable queen where I will be able to sit up in the bed. Expensive and will take time as it comes from the south and the manufacturer has to fly up and erect. I should know next week. OT is arranging through My Aged Care. They will say yes or no......with helping with finance.......if no then we have to go it alone.

I’m not usually so despondent and hope I don’t come across as a whinger......this time of the day, and every day is the same , but I do get through it....

I’m sure once the overall effect of anaesthesia has left my system my PD will on the way out again........I’m not putting up with Injections for ‘no ‘ result. Big words., Maybe I’ll fall in a heap too.

Thank you for your email address. Mine is [e-mail].

HGE

[Bridielena]

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