Thanks for your reply, Mary1947. I’m sorry to hear about your parents. Is your mum settled and safe?
I hadn’t thought about social services. Thanks for the suggestion. I really should have thought of them, having gone through all of this with setting up my daughter’s care plan.
Things have moved on a little since I first posted. I saw the neuro physio, who did an initial assessment, explained about what I should expect from the service in the way of future appointments, and gave me some exercises to get on with. The 6 to 8 weeks follow-up turned out to be 11 weeks, but that was cancelled a week later, with no replacement in the month that’s followed. I’ve chased up once to no avail, so PALS are getting a call tomorrow.
My initial assessment with the PD nurse went well. She took plenty of time to go through my concerns about the meds (Madopar, in my case), and I decided I would let the GPs know I’m ready to take it. I had a meds check with the pharmacist around then, so I was able to let her know what was happening. I had been considering changing from Warfarin, which interacts with everything, to a newer blood thinner, so had a talk with a GP, raising the subject of the PD meds, as well. Now, they have decided something requires a review by the GP partners! They’ve had the PD nurse’s report for a good couple of weeks but not put it on my patient record, and not given me my Madopar. I spoke to the Parkinson’s UK helpline to find out if this was normal, but they’ve never heard of it before. Murphy’s Law strikes again! I’m about ready to give up. Oh well, onwards and upwards.
Indie please / Please/ don’t give up you still have a lot of life left in you? It my mum who had dementia and loss of site, when I took her to our GP and he told me what she had, first thing i said was “Please how long” at the time she was 90, Dad had left us a few years before, I also have 2 brothers but never did see them at mums, well it got to the state where my self and hubby just could not manage it any more, so this is when I ask the social worker for help. Mum lived till she was 99. But I have 2 wonderful daughter in laws who helped. I did not find out that i had PD till 2010 which was quite a while after mum left us. Since then I have had spinal surgery, found out that i Have arthritis in both knees, and fingers I took to a disagreement with a concrete slab I don’t think i should say more, but i do have 3 season tickets 1 for QMC hospital 1 for Nottm City hospital and another for Kings Mill hospital, I am sorry Indie but what is the obsession with Madopar as there are so many other drugs coming on to the market, if you look at Parkinson’s UK site the do a small book on how the nurse’s combined the drug to work together and how each drug works. Remember when not long ago if some one had Cancer you would never mention. it. was not known how you would have left. if you did have cancer you just thought “Well How long have I got?” Yet look, now due to the deadicated team in the stemcell lab at Nottm City Hospital they are now finding HOPE. just a little more PD in quite a new condition, it is trial and errow on all of us. I have tried some of PD’s new meds 3 in all but and not one suited me. |One day went to see my GP she was looking at me and reading my notes. they she said are you sure that you have got PD as you don’t look like you have? I will leave that one with you. I am now 78 miss my car like hell but HA HO it was not me bring safe on the roads but i thought well maybe the folk on the roads are safer in I did not drive., Now this is not for everyone but when i found out that I had PD all or most of our money was tried up in our house, a friend ours was in an Anchor bungalow with had independent living but in emergence we had a pull cord and a manager on call if needed, so we out our names down and waited, we sold up moved it had bags of cash (For want of a better word) gave the 2 boy and wives 3 grandsons Their ineritence and been around the world twice, NEVER REGREATED IT, we have now been with Anchor about 18/20 years we have gardens ./window cleaners ect, and what you must remember Parkinsons IS A SLOW PROGRESS CONDITION. ps your daughter sounds lovely but you need a rest can you not get restbite for a couple of weeks? sorry if this post upsets you { hope it does not but come on Indie take that bull by it;s horns and smell the roses,.